What are the 4 Stages and Symptoms of Cirrhosis ? If you are like me, you did not know diddley squat about the stages of cirrhosis when you were first diagnosed. The End is pretty easy to figure out. But how in the heck did I get to the end, or stage 4, or End Stage? What happened before, during, and after? If you have even read one of my blogs, you know that I have questions, and won’t stop until I get answers. Yes, many have reversed liver disease.
What foods are safe?
Cirrhosis is talked about in 4 stages. Your doctor can tell what stage you are in with blood tests, MRI, FibroSURE scan, liver biopsy or other procedures.
Scarring in the liver is called fibrosis. The liver tries to heal itself by forming collagen bands. The collagen grows, connects, and wraps around the liver. Your poor liver does not consider what the scarring will eventually do, it just tries to heal itself.
First Stages
Stage 1 of Cirrhosis is when your liver is inflamed and trying to heal.
What your liver is going through: Your liver is destroying itself in an attempt to heal. It may show signs of swelling. Small amounts of connective tissue may be found everywhere, including the portal vein area. Very little damage has been done, but your liver is feeling poorly from disease, alcohol, Hepatitis C Virus, fatty, NASH, or from whatever is attacking it.
What you are going through: This stage usually has no symptoms. You don’t have a clue that anything is wrong.
Stage 2 Shows inflammation, but not a lot of damage.
What the liver is going through: There is a red alert going off telling the liver to work harder, so it puts out collagen to try and stop inflammation. It is still working really well. Most of the liver is healthy and normal, and the fibrous bands can be in certain areas. Mine are mainly around the portal vein area. Your other organs are probably not even affected yet.
What you are going through: At this time, you may have slightly higher liver enzymes in your blood work. Most of us do NOT have any symptoms at this point.
Later Stages
Stage 3 is when damage is showing.
What the liver is going through: The fibrous bands send out runners, connecting with who knows what trying to heal. You may hear the term “bridging” used. I picture it just like a bridge made of white collagen fibers, bound up, trying to help. It does NOT help. The connections are not useful. They wrap around everything, shutting off veins and arteries. The liver feels the pressure. It’s job is to filter the blood. What? No blood is coming through? Sadly, now major problems occur, and other organs are affected. Remember, any healthy piece of liver that is left will keep doing it’s job. In fact, the whole body compensates for the mess that is being made.
What you are going through: By this time you are feeling it. You may have itchy skin, eczema, hair loss, mental confusion, high and low blood sugar swings, food coma after heavy protein meal, and swelling.
Stage 4 is considered a last stage.
What the liver is going through: By the time this happens, scar tissue has zig zagged through the portal vein system. Even the healthier portions of the liver cannot compensate very well any more. The kidneys, spleen, gall bladder, and gastrointestinal tract are feeling the impact. Your liver has passed it’s pain onto the rest of your body. You may hear the term decompensation.
What you are going through: This is where it begins to fall apart. You may have mental confusion, hepatiic encephalopathy, yellowing of the eyes and skin or jaundice, reverse sleep pattern, swelling from fluid build-up called ascites, portal hypertension creating varices, and other symptoms.
Keep your chin up.
I have lived through end stage liver disease and know that your diet, lifestyle, and medications can help.
End Stage Liver Disease or Failure – The liver is no longer able to carry out the functions that you need to stay alive. You are going through a very hard time mentally, physically, and emotionally. Your organs begin shutting down. I had that label the minute I was diagnosed with Hepatitis C.
End Stage does not have to mean the end of your life. In fact, saying those words to you is the whole purpose of this blog. At one time, liver fibrosis reversal was not considered possible. At one time they thought the earth was flat.
Stick with me. Practice lifestyle and diet changes. We’ll figure this out together. xoxo Karen:)
I wrote this in 2013 and updated after my liver cancer and transplant. Really, you’ve got this. For more links to Cirrhosis and liver disease or Hepatitis C articles click here.
This $4.99 ebook can help you. Click here to learn more
Our liver works hard to heal itself!
Can your liver can heal itself?
Are you willing to make small changes so that it can?
pics via nlm.nih.gov, livedesignonline.com, weightlossdetective.com
291 thoughts on “What are the 4 Stages and Symptoms of Cirrhosis”
Hi Karen,
Yes, I believe that our body can heal itself by changing our diet. First off, I didn’t know what cirrhosis mean til I read your blog. Thank God that I have immune vaccination against all sorts of Hepatitis. Being a CNA and RT (respiratory therapy) student then, I had to get all my immunizations done before I could work in a hospital. Anyway, thank you for sharing this informative article.
My question, how did you get healed from cirrhosis? What kind of diet did you have?
Angela
Angela,
I still have end stage cirrhosis. The damage is permanent, but there is hope for reversing some of the fibrosis. What was considered a death sentence is now an invitation to life.
I have written a lot on a liver loving diet and am try to compile and publish my recipes that helped rid me of the “expiration date” stamped on my foot. lol.
I too was a CNA and heading toward nursing school. Back then, there were no universal precautions. Hep c was called Non Hep A or B.
Thanks for your compliment. Truly. Your story of chasing your dreams and learning how to run a website has helped me so much. It has inspired me to keep this little site going.
Keep up the work! Although our sites are different, I need yours to fuel mine. xoxoxo Karen:)
Karen,
I am at the stage of transplant and need a care taker, My wife of 24 years walked out on me and with no family I am left to defend for myself. I have a home in Tennessee and willing to share with someone in my same shape. This person would need me for the same reasons who comes up for transplant first the other sees him or her through.
I am not that computer literate and need all the help I can get. My question for you is, where do I look for this person, what site do I go too? Please if you can tell me where to look on the computer and find a genuine sincere person as I feel I am… Hope you can help for I really have no idea where to look and that’s not saying I have not tried for you can trust that I have. Thanks, Don Smith/ Smyrna, Tn.
Dear Don, your story really has touched me so much. I am Dee, an old friend of Karen’s, she asked me to help her while she recovered from a procedure as well as waiting for her liver transplant. She and I are a lot alike and the biggest attribute we have in common is that
I have a couple of ideas. One is that I remember my Grandmother could not go home after an operation so she went into rehabilitation.
She stayed there for a month, from what I remember her health insurance paid for 10 days and medicare paid for 20. I looked up a rehab place in Tennessee and I found this, http://www.vanderbiltstallworthrehab.com/ This may not be convenient to you, I don’t really know the area but I will learn it. If not I will look for other places. Oh…I see you are in Smyrna TN. I will double check information and write to you asap. Hang in there. I believe that everything happens for a reason. I am praying that you can find the help you need. I will keep in touch, Dee
Email me Don
Hi Don,
Did you find a caretaker? I am stage 4 grade 2 post transplant. We need to build a community of helping each other through this process. I might be willing to come there and help you if would in kind help me when my time came. I’ll bookmark this page and check back tomorrow to see if you posted. This would be a no $ deal, but once you are well I would ask that you help me and perhaps the other folks out here could help and we could create a network of mutual caregivers.
It’s not a pretty way to be at the end, there’s lot of anxiety and more. No one knows more about how we feel than us. So maybe we need a pre-post transplant care cooperative.
But one step at a time. Hit me back and let’s make sure we both pass background, safety, etc. checks and let’s take it from there. Then we can work on the greater plan of a cooperative.
Sound crazy? Sound OK? Let me know. Thanks, L.
Just now posting this. I hope you link up and are able to help each other. I have a friend post transplant who is ill. All I could do was contact a local church and ask them to check on her. We are so vulnerable at this time in our lives. My heart is with you both. Much much love,
Karen
Thank you Karen, for this site and for all your positive inputs. Being alone at this time and the need for a caretaker which is often a requirement for transplant is a very difficult situation. Even those of us with large families often have trouble finding someone to sign on for the difficult road. Thanks again for everything.
HELLO DON,
DID YOU FIND SOMEONE YET TO HELP YOU? I CAN NOT GET A LIVER
TRANSPLANT, SINCE I HAVE LATE FATTY LIVER DISEASE BECAUSE
OF BAD PANCREAS AND THE DEPENDENCY FOR INSULIN ALL THE TIME.
BUT I WOULD INDEED HELP YOU ALL THRU YOUR PROCESSES. I AM
60 YO MAN AND STILL HAVE SOME GOOD LIFE IN ME THAT I WOULD LIKE
TO USE AS HELPING MY FELLOW COMMUNITY OR JUST 1 PERSON
. I KNOW WHAT YOU ARE GOING THRU SOMEWHAT AND I AM GOOD
MEDICAL RESEARCHER. I DO NOT GIVE UP.
MY EMAIL IS: MIKEPOD6355@YAHOO.COM AND LET ME KNOW IF U STILL NEED HELP.
Hay Mike,
You’re awesome! Thanks so much for posting help on the website. I wasn’t sure if you wanted me to put the phone number in so I’m going to post it without it. Let me know and I can always edit it back in to help our friend Don.
Once again, thanks a million for posting. I don’t have all the answers and your encouragement means so very much. xoxo Karen
I have stage 2 chyrrossis. If I quit drinking alcohol, how long mightbit be for the liver to heal itself? (Please redpong via email only.)
I sent you an email and it bounced back. Let me know if you got it or email me, KK?
Karen/Don,
Can you please help me I need urgent advice my email is…..
Thank you x
Hi could you please email Karen directly? IhelpC@gmail.com
Thank you, Dee
I am in need of the same answer for 2,3 or 4.
I’m so scared I am a 26 year old single mom of my 9 yeAr son and almost 7 years old daughter. I have the signs of all of these. I will be going straight to the church in the a.m and doctors on Monday to hopefully get tested. I have lied about my drinking to my doctor and was drinking a lot. I So terrified. My mother is battling cancer and her and I are the only ones here my little BABIES. I can’t let them go with no family through there lives!!!! I just threw out every single beer and mini shot in my house. I don’t drink every day, I drink when depressed or stressed which is usually 3 days a week at the least, at night after my kids are in bed so they don’t see anything of that sort. Please someone any other advice until I see doctor. Vitamins or food? I have been having spasms in my brain for the last month an a half and have been concerned. Idk why I have put it off. I also suffer from svt heart disease since age 12. Will this affect it also?
Hay sweetie – I read your email early this morning and kept you in my heart all day. Gosh I’ve prayed and sent so much love your way.
1. So proud of your courage for speaking your truth to me. You own it and now you can get help and move on. Find a celebrate recovery, counselor, pastor, whoever and tell them the battle you are facing. You’re not alone any more. Everyone who reads this is in your corner. A licensed clinical social worker or licensed professional counselor can be very helpful.
2. You are going to heal and raise those kids no matter what you face. You are the hero of your own story. You’re smart to be looking up help. Eat healthy and read on this site how to eat for a healthy liver. Click on the black checkered flag that says “Start Here” for a list of blogs. Check out recipes also.
3. Tell you doctor you are serious about getting help and healing your liver. Follow their advice.
Most of all, feel loved and know that you are supported by prayers from others. Thanks for reaching out and always keep me posted.
xoxo Karen:)
hi I have 3_4 stage getting worse all the time it was great to read your blog,makes u feel like I’m not alone.
I am so interested in doing the healthy changes and together would help we all need to encourage one another throw things like this it’s hard to live it and the ones around u don’t get it.
thank you for sharing
Hi there! You are so right, you are not alone. There are many facing the same things and they feel very alone because they don’t know anyone with the same problems. Take Care, Dee
Hi Nicole, it’s so true what you say. It seems as if people don’t understand this illness. It’s a gradual tearing apart of your organ, body, you mind and people can’t seem to understand it.
You are right. We need to talk, post, share until people do understand.
My heart goes out to you, know that at least one person out here understands. Take a deep breath, do what you can, be kind and patient with yourself. You deserve it.
What can I do??? My husband I’d in the end stage still drinks beer everyday. .Taking Viekira pak…I’m scared for all of us. .I see a huge loss in body mass… body pain all over and still working everyday but he is going down hill quick and I see it..we have 2 small children…feeling lost
I am so sorry to hear your story. You can only take care of yourself. I am surprised that someone who is trying to kill the HCV with Viekira pak would drink with it. That could affect the outcome of getting cured. When I treated I had to tell my doctor everything I took.
I am really sorry, I wish I had some words of wisdom. Take care of yourself, Dee
I am Anthony I was diagnosed with HEP C in 2001 I went through every treatment out there and then I had another biopsy the last time I was told that I was stage 4 Cirrhosis but after a wonderful nurse named JOJO who had been involved in a few of my previous treatments reached out to me and told me about a trial version of a new medication no injections a couple of pills a day well a little while passed and my viral load was dropping and at the end of the trial I was considered cured since my viral load was undetectable by their standards that was a few years ago and I felt great for the first time in I can’t remember how long but very recently I’ve been feeling a little different foggy forgetful,body swelling but now my joints hurts like hell especially where I had previous injuries at fists elbows wrists I can feel differently about things I was told that my liver isn’t filtering the ammonia but I don’t know if that’s the extent of the problem I’m trying to get my priorities in order just in case if anyone out there has had any family that went through this process a heads up would be greatly appreciated well I hope everyone who’sdealing with this or a loved one keep your head up but don’t give up AF.S.sr.
Thank you Karen I had the knowledge but as always I love your translation…Much Love
Debbie,
When I wrote that, it was at the beginning of understanding how my own body worked. Writing and researching have helped me to figure out so many things. Like how to help my body heal and support my liver.
I think it was painful too. Reading about the earlier stages and wishing there had been more attention paid to warning signs made me angry! But I let go of that too and accept it for what it is now. I like to promote this one again from time to time to be a guide for the newly diagnosed. Our knowledge is what gives us power when we talk to our doctors. It helps us make informed decisions regarding what tests should be done too!
You’ve blessed me with your sweet words. I hope your week is awesome!
xo Karen:)
FYI there is no vaccine for hepatitis c.
B well.
Teresa
I am in the 4th stage of Cirrhosis and have just finished my 3 hep c vaccines and my 2 hep b vaccines. They are available in Nashville Tennessee
Hello! Nice to hear you have gotten vaccines for Hep A and B. Unfortunately there is no vaccine yet for Hep C.
Good luck to you!! Dee
My husband has been diagnosed with cirrhosis of the liver. He has had ct scans,done they show he has lesions on the liver.He had a ct scan done in 2014,and one done this year, ofcourse the lesions this year are a little larger. One oncologist suggested doing nothing. This second opinion oncologist suggested having a liver biopsy. My husband is 80 years old. Do you think this is feasible for an 80 year old man. I am afraid of him bleeding,or who knows what. Do you have any suggestions?
Angela, I just wanted to point out that your statement “Thank God that I have immune vaccination against all sorts of Hepatitis” leads me to think that you believe that you were immunized against Hepatitis C.
There is no such thing; there is no vaccination for HCV.
Don
Don,
I’m glad you caught this! You are absolutely right. There is currently NO vaccine against Hepatitis C. I hope someday there will be. That is one of the reasons that even those of us who clear the virus still have to be cautious regarding reinfection. My doctor told me that with the new safety measures in place regarding blood testing for transfusions, it has become much more rare to get.
Thanks so much for your comment and correction!
Karen:)
My recent diagnosis of Myelofibrosis was devastating. Seeing you & reading your words are exactly what I needed. Thank you Karen!
Tia,
I read about Myelofibrosis after your post. I got your message about your doctor’s conservative treatment. You are so blessed to be able to have an allied health team you can trust. You said it, it doesn’t matter what illness we are facing, the emotions are the same. We have to grieve some losses and then decide how we will cope.
Your positive outlook is what will see you through. It’s a day by day process, isn’t it? I’m always here for you, so let me know if you need anything.
xoxo Karen:)
Hi Karen my name is Elaine and I underwent a Gall Bladder removal on 10 th December 2014 spent the next 4 days in HDU when I eventually was compas mental the consultant said I had the worst liver he had ever seen he described it like a cornflake cake & it was all my own silly fault I don’t know how to work out what stage I’m at & I have to wait another 8/10 weeks for a so called urgent appointment with a Gastro Enterologist no one has explained it to me except to say I have a very bad scarring of the liver please can you email me your food diet for loving your liver & any information that will help me see there is a way through this for me many thanks
Hi Elaine,
If you will go to the Best Friends Start Here link on the right hand side and click it, there are all of my diet resources. I’m working on a new project for diet specifically that will help with grocery shopping too!
You’ve come to the right place. Food is medicine and you can turn your life around if you are willing to eat well. I can promise that! It’s been almost 5 years and I am proof that it works.
Keep me posted and watch for the new diet blog. KK? You’re in my heart.
xoxo Karen:)
Where can I find your diet?
Hi there! Thanks for visiting! It is on the upper right hand side of my blog. Here is the link to get you started. There are many many good articles that Karen has written, good luck!!
https://www.ihelpc.com/liver-loving-recipes/
Hello Karen,
I just happened upon your blog and I am so glad I did. It helps so much to read your posts and to know that I am not alone. I also went through banding, thankfully only once and have had check ups and so far no additional banding is needed. I too am on a beta-blocker. It’s very scary to realize that cirrhosis is a condition I am going to live with, but I realize that the key word is LIVE. I plan to visit your blog often now that I have found it. Thank you Karen, it truly does feel like I found a new friend.
Chrissy,
I love it that you’re reading around on the blog. Writing about illness is such a solitary thing. Me in my living room. (except right now my computer is down and I’m doing this at school before the bell rings.. lol) It is ALL about connecting with each other. It feels like our body has betrayed us. But with love and care, good nutrition and support, we are doing it. I ate a lot of onions on a burrito last night and had heartburn this morning. That seems like a small thing until you’ve had a banding. I take an acid blocker to help my stomach stay healthy.
No recent bandings for YOU!! That means the beta blockers are doing their job. What once seemed so scary is now a little less frightening to us. Congratulations on a good bill of health for the varices. I could just hug you right now!
xoxo I’ll be watching to hear from you soon.
Karen:)
Hi Karen,
I just ran across this site, and wanted to share. It was more like, I needed to share. I don’t even remember when I was first told I had Non A Non B Hepatitis. I have rarely had health insurance, so I think I was told after donating blood. No one told me that I needed to seek treatment so I just thought the worst of it would be that I could not donate blood anymore. Over the years, off and on, if I was hospitalized or had blood work done, someone might mention that I had hepatitis. I vaguely remember at one point someone told me it was now called Hepatitis C. Again, not 1 person ever told me that I should seek treatment. I finally got on a sliding scale payment program in San Antonio called Care Link, and started to see doctors. My PCP would do bloodwork when I went for an appointment with the flu or something, but other than that no tests were ordered and no regular blood work was done. He told me he was keeping an eye on my numbers for the time being. Still, I was not told by him it could lead to something more serious and treatment was never mentioned. They no longer have my medical records from that time because of lack of space to store them. They were destroyed after 5 years, without notifying anyone they were going to do this. Fast forward to November 2, 2011 exactly 2 years after my mother died. I am at the minor emergency clinic for what I don’t remember, and the doctor I saw casually tells me that I have Cirrhosis. So I went home and started reading because that was all he said. I have now been to 2 Hepatologists through that sliding scale program. My first visit I was told that I could stop taking my vitamins and no treatment was discussed. That first doctor was in a hurry and kept trying to walk out of the room. She did order the test where they go down your throat and look around. They found I had portal hypertension and stage one varices at that time. I had a follow up visit with a wonderful new PCP who started me on Propranolol and Lactulose. That made my Hepatologist mad. On follow up visits with my hepatologists, they kept telling me I could stop taking the Propranolol. When they finally said I was ready to start treatment, I told them I wanted to start treatment there with them with FDA approved drugs, I was told they were sending me to the Texas Liver Institute for a drug study with non FDA approved drugs. There was no study for Hep C and Cirrhosis combined for a while. When I finally started screening for a study for Cirrhosis, the EKG showed I have a heart condition called LBBB. So there went the study. I argued my way back to the Hepatologist to get the FDA approved treatment which includes Interferon. They won’t treat me due to the LBBB. I was told wait for new drugs to get approved. In the meantime, my liver has gone from swollen and enlarged to shrunken and wrinkled. I finally got insurance through obama care, and will see a new hepatologist the 21st of this month at the Texas Transplant Institute Liver Clinic. I don’t need a transplant yet, but can still be seen there. I have no family support to speak of. My daughter recently came on board, but has trouble helping me deal with it so most of it I deal with on my own. I feel thrown away. I can’t hold any more health info in my brain. I think my Prozac and maybe Propranolol contributed to the heart issues, which make me dizzy and always exhausted along with the bad liver. I tell God my life is in His hands. Thank you for letting me share.
Karen P.
Karen,
First of all – I love your name.. it means “Pure” and I want to assure you that you are NOT a throw away. It sometimes feels like it when our voice is not heard or respected. Your daughter will have to slowly come to understand your diagnosis. It is so hard on our kids. That is where we learn to trust God for our future. He is faithful.
I have heard of your heart condition, but did not know that it would be made worse with propanolol. You are in a pickle! I know for a fact that it makes us groggy. I take mine just before bed. The one I use called Nadolol is time released so I do not have to take it during the day. That really helped. I don’t know if you are on a morning dose, but that can really put you back to the bed for the day.
I have heard good things about the Texas Liver Institute. I had to go through a transplant hospital to treat also. At least now you have a couple of things going your way. You are being seen by a good team of transplant docs who can help you if your liver fails. You can treat and get rid of the virus so your liver will get a break. You have a chance to get insurance which will make good medical care easier to keep!
All of these things, along with your daughter being in the picture can add up to a hope for a good future! Stick with the Lactulose too! You have come a long way with a lot of hard mountains to climb. I have a feeling that you will get over this one too dear friend.
Thank you so much for sharing your story. You are NOT alone. I think this will encourage many others to hang in there and hope that they will finally get the break they need too!
Love,
xo Karen:) Stay in touch.
I have a fatty liver that I’ve been working on, losing weight is the main thing but that takes time. My liver enzyme was elevated so my doctor wanted to take a biopsy to see if my liver had any cirrhosis. He gave me three months to get my enzyme down before we started taking drastic measures (I don’t drink and I’m not horribly overweight). I started taking another milk thistle product and it did good, I could feel the pain in my side reducing and I felt more energetic.
Remus recently posted…What does SGPT/ALT Blood Test Value mean?
Fatty liver diet is pretty tough to get going. You’re right, it takes some time, but will be so worth the effort. I wonder your doctor means by drastic measures. Some consider the needle guided biopsy an invasive procedure. I know that use other methods also. The GOOD news is that you were able to reduce your pain. Don’t you absolutely love it when you get a little control over your illness?
Not drinking and keeping your weight down is awesome! You’ve won a huge part of the battle already. Milk thistle is has been endorsed by some M.D.’s and others totally disapprove of it. As long as your doctor is aware, I am happy to hear that you are getting great results! I tried the milk thistle product too and wrote about it on this blog.
All my best to you on your health journey. I’m glad you stopped by to visit! I stopped by your site but was unable to leave a comment. Can you tell me why? I’d love to chat more.
Thanks, xo Karen:)
my story is different which confuses me. I woke up with a pain in my stomach-the pain radiated to my right side and up my back. It was severe and I had trouble breathing. I was diagnosed with pancreatis. A gastronologist came in and said it was my liver. When I got home I had edema in my lower extremeties & my stomach area began to swell. They took out 3 gallons of fluid and said it contained fluid that proved it was cirrhosis. I was not a drinker and am considered thin. I also do not have heapitis. My doctor told me not to eat hot dogs (which I never do) and watch my sait intake. That’s it. I am scared and do not know what to do. I have pain on my right side and it is strong. Help
Hi there. Your message raises some anger in me. I gotta calm down here. When I was first diagnosed, it felt like I was not getting any information either. But honestly? For you to have ascites (fluid build up) and swelling in belly, legs, and feet there is definitely liver disease happening. You deserve to at least know the cause of it. For example it could be autoimmune, fatty liver disease, or other things besides hepatitis or alcohol and drug use.
You also should have some other tests like an endoscopy where they look in your stomach. Did they perform a CT scan? These diagnostic tools can help a doctor to know how to treat you. I’m assuming they gave you some diuretics, right?
I will say that the advice is basically the same no matter what caused it: Low sodium, plant protein as much as possible etc. Now I am calming down. Really, this is why I started the blog. I was just like you and didn’t know what to do next. My doctor’s did perform a lot of tests and kept a close eye on me. I hope that your doctor is doing a close follow up also. Do you have family or friends who can help you know which steps to take next? Maybe another doctor?
Listen kiddo, it is scary. My liver has hurt all week since I had a procedure done. Pain sucks… and it plays tricks on your mind. Please try and take deep breaths and relax. Send your liver some loving thoughts and good food. I’m sending loving thoughts right now.
xoxo Karen:)
Thank you for your responce. I am not a medical person and am looking for answers. I now am eating foods around the outside and not the middle of the grocery store. After reading so much on the internet I wonder what stage of cirrohsis I am. Some bloggers claim the liver will heal itself. Since changing my diet the pain is not as bad.
thanks again Henry
Henry,
You’re shopping the same way I do! It’s really different for us now! The liver definitely can heal itself. It’s the healing that causes the fibrosis. Many people who get rid of initial cause of liver damage such as HCV, drinking, or drugs or use drugs to reduce inflammation from other liver disease do really well.
I say that because if you are only stage 2 ish, you can live decades with the diet and lifestyle you describe. My hope is that you will do just that!
THanks for stopping by, xo Karen:)
Hi Kare, I have stage 2 of Fibrosis…my liver enzymes are back to normal now. Is it possible to reverse this scar tissue at this stage?
Hi there! Yes it is possible to improve, especially at your stage. I would cut out red meat, fried food, processed lunch meat, try to limit salt, which is a hard thing to do. Drink plenty of water to help your liver process and function as well as it can. I can see proof that I am getting better. I had spots all over my legs, (cyrogloblinemia) was told they would never go away. It took a couple of years but they are gone. Good luck, D
Karen you’re the angel that many of us look too ! Having end stage cirrhosis and facing my next steps now ) starting sept 2nd I start all my tests . I have remained quiet . I took my daughter on a small vacation! The 1st one since clearing my virous 12 weeks ago ! I don’t have the heart to tell her what’s ahead now .. I’ve decided to wait and see what all my options w) be after Sept 2nd, but Karen I am 4ever gratful for all that you write . So many complications we have from all the virous caused . I just want to tell you ) your name is brought up often ) so people like me miles away think about you often . I watched all your videos during my tx ! I follow your posts as my he allows on top of work ) and being sick ! I have you in my prayers . You amaze me at all you can do . Your knowledge . I have lost my teeth on too so so many complications ‘ My stroke caused many issues . My list is long . What’s important is that we all stand as 1) and get well . The education you’re putting out is so important . Thank you . can’t concentrate long enough to do all that I used too in my community with hcv ! So I look up to you . I know you need to look up to us now though . Not enough words can say how much you’re loved and thought of. I will be holding your hand ) please hold mine too ) as our new liver journeys have started! But we will win this battle , I’ve had that horrible stomach and pain since 6pm or so ! After waking up at 9pm or so I got up . Still awake now ) but thanks to all that you do Karen my mind is calm and eyes are heavy . I hope you awake pain free! If I sound confused today ) I know you understand . I hope that you’re smiling today beautiful and that rainbow touches you .. You deserve the dream ! I love you Karen ❤️❤️❤️
Dear Ann,
When I first read your comment, I thought maybe you didn’t want it posted. Many readers like to remain anonymous. You and I share so many common friends, that I feel you are ok with me responding on the website here. I truly had no idea you were going through the listing process. You are right, it is so easy to get brain foggy and forgetful.
It’s scary stuff sweet girl. But it is also a new beginning for us in many ways. We will focus our attention on training for the transplant. Like a laser beam, we will set our eyes on being in the best possible shape. Then we can begin to heal and move toward the bright future!
I will be writing about the process of getting listed and also about the surgery itself and the lifelong committment to caring for a grafted organ. We will be learning about this together dear one. I’m so sorry that you have to endure it, but you are not alone.
It means so much to me that you were my bestie during treatment. I was holding your hand then and will continue to hold your hand through whatever comes up next.
You are not so far from me. You should let me know when you are near Tulsa again. We can hook up and hug and chat! I mean that!
Much much love and I”m going to bed too. Pain was less today. Yes, healing always comes. I love you too Ann!xoxo Karen:)
Dear karen
I am a first time reader / visitor of this site and felt really great after going through some of the comments.
I need you help as my father has got liver cirrhosis and was identified in January 2016 when he vomited blood. Since then we are regularly going through Endoscope and banding of varcies.
Recently a week back he got the fever and we consulted the gastro where he told that its a viral fever. But as soon as the viral fever got over he is having swelling in his both feet.
Just need your help to find out that which stage he is in and what is the cure. Helpful if i can get the direct contact of you where can have more and faster information.
Thanks
Thank you, and I hope you will click on the black and white flag on the home page for a list of other ideas to help you with your fathers care.
I am happy he is getting regular bandings and this will keep him from a major bleed out. Only his doctor can really tell, but usually varices is toward stage 4 or end stage. But even with that, I have seen people who work hard with their diet, support from doctor and family, and also medication.
I know a man who was in hepatic coma and then lived for 20 years. Everyone is different. This is a time to stay close as a family. Show each other positive attention and love. Eat good simple food.
I hope that this will encourage you and your family.
God bless you,
Karen
Hi Karen,
I am over here in Ireland and have been reading all the information and support given by yourself and others. It is so hard to find the right type of information that people with cirrhosis need to stay as healthy as possible, but sometimes the barriers of life in general stand in our way. I was told I had cirrhosis on February 2011 due to alcohol abuse, I was not a fall down drunk but just got carried away with living a good life in general also my job involved a lot of social events.
To my horror I thought I had the flu over the Xmas period, and on 2 February 2011 woke up to find myself yellow so my g.p sent me straight to hospital where I was in ICUS given potassium, blood, IV fluids etc.., then ten days later when I was transferred to a ward to recover from all the drama was told about my liver I felt so guilty as I realised I had nobody to blame but myself, a few months later I devoleped vairces with portal hypertension and had a really bad bleed which I almost did not make it I had lost about four pints of blood. I have not had a drink from that February and can easily say I will never have another drink, but since then I have developed diabetes type 2, and at the moment having trouble with my heamaglobin which is hanging around 7 so I had a blood transfusion last week, but still feel terrible.
The problem I’m having is I can’t get a straight answer from my consultant, I have asked him many times how long can I expect to live? How long do I have until I become really sick, as I need this time to plan my future, I see him twice a year for consultation and I have two scopes a year to check for broken veins, abdominal scans twice a year, I take all relevant medication prescribed for me beta blockers, stomach medication, stertraline, so I guess I am asking do you have any idea of the questions I need to know I also know You can’t put an accurate time on something like this but for somebody who talks to a lot of people with the same problem might help.
He has also said that I can go on the transplant list as there is no issue with alcohol anymore and he knows I am doing everything he tells me to, but that was two years ago and he has never mentioned it again. So I would be grateful for any help anyone has to offer. Love to all who are going through this horrible illness.
Kind regards
Rita from Belfast.
Rita,
Wow. You’ve had a go of it! Our diagnosis was much the same with the “flu” symptoms ending up as cirrhosis.
You pose a tough question that we all ask ourselves. How long do I have? Which route should I take? I decided NOT to go the transplant route and was satisfied to just keep living my life. Fatigued at times, zoney, etc. but it was working for me. My decision was pretty much made for me when they found the tumor. I jumped on the chance to get a new liver. Now even though I am on the list, I still go back and forth. But the truth is that the cancer can spread. So I am going forward.
You CAN live a great quality of life with cirrhosis. Stay with the meds, eat like a ninja, and be a “self lover” in all areas of your life. I’m hoping that others who are wondering what to do next will respond. It’s a personal choice about moving toward a transplant. Have you checked out my Facebook ihelpckaren or ihelpc.com on Facebook? I have a lot of friends there in the same place. Tons in the UK also. xo Karen:) I know you’ll stay in touch and let me know. I’m writing about transplant right now. It’s a bugger and makes me cry. Let me know what you think when I post it. ok?
Much love, K
Dear Karen, I am so happy to have found your blog. My best wishes to you and hope you get a miraculous new liver soon to keep you spreading the word to the the world. So far from what Ive read if feel a real connection here. I’m on Med Help forums and it feels like I don’t have the same level of knowledge and common healthy eating goals there as you seem to have.
A brief summary of my situation:
Diagnosed with Hep c after a 2005 hip replacement. (The sent me a card to attend a class for hep c in 2009!) 4 years after. Oh well that is water under the bridge. Arthritis and joint pain seem to go hand in hand with liver disease.
That doctor (the one who waited 4 years to tell me) said that I had stage 1 and fatty liver. Hep c 1a. He also said the treatment was arduous and not very good and that I should wait for new and better drugs.
Change of doctor in 2011. We went by the old pathology and didn’t repeat the biopsy and decided to treat with interferon, ribaviron and boceprovir. Which I acheived undetectable. But for some unknown reason I didn’t screen (myself being my own best advocate ) I wasn’t asked to come in for regular screenings and so long story short, I didn’t. I thought I was SVR. But no. P.S. I also drank wine during that time thinking I was cured. Probably the worst mistake of all.
A few months ago and if I think about it several episodes over the past few years ago, I had the flu-like symptoms plus racing heart and severe headache. They emergency room tested for everything heart related. Nothing just a high ALT/AST result. I call my GE and go in. I get a fibroscan the same day. Stage 4 cirrhosis. I was like being punched in the liver. (Which aches and hurts all the time) Hep c was full blown relapsed.
I fought with my insurance and appealed every denial and every other drug they tried to give me that included ribaviron. (I like you lost my hair, covered in a rash, mouth sores and was really on the low down with the Int/Riba/boceprovir. )
Feb 20th took my 1st pill of Harvoni. No side effects from the drugs at all. The only thing I feel is the side effects from liver disease. Fatigue, dry skin, achy upper right quadrant.
I don’t drink, eat a largely vegetarian diet and just really started watching my sodium. I have never had varices or ascites. So I just take it easy (thank god I can afford to thanks to my husband) and pray without the hep c or wine my liver will regain some more of it’s normal function.
As an aside my brother (different animal altogether) almost died from ruptured varices in 2009. I went to see him in another state. I spent a week with him and my niece in a hotel at the Mayo clinic trying to get him on the transplant list. He refused to give up his addiction to pain meds oxy etc. and he was denied. He was a disabled veteran. He died in October right before my diagnosis of F4. He was in home hospice care. He had the same hep c that I do. He never treated it,
tho he did quit drinking for the past 10 years. He also never ate healthy. Mac n cheese was his favorite. Quarts of fluid was drained from his abdomen numerous times.
So super wake up call. This stuff can kill you. I try to remain positive and proactive and have taken up the full time job of taking care of me.
Tomorrow is my first blood test after 2 weeks on harvoni. fingers crossed.
Most RX naive patients with no cirrhosis only have to treat for 12 weeks.
I as a relapser with cirrhosis treat for 24.
Thanks for letting me share. I still feel uneasy sharing this journey with my friends. The question of how did you get it? doesn’t matter. I have probably had since I was 18. That tatoo in Amsterdam , those stitches in Karachi. The ears pierced in Thailand. Who cares? It is what we do now, today.
Thank you for being here. It means a great deal.
Teresa
Teresa,
I loved reading your story. I hate it that you have hep c. But I sure am glad that we connected! Your story also echoes what many of us have gone through. It really touches my heart to hear how brave you’ve been. I also hear how lonely and frustrated you’ve been in relationship to your doctor. Sounds like you’ve got a good one now.
I wanted to respond with a congrats on finally getting new treatment. Yay for the new all oral drugs! It’s amazing.
I’m so sorry to hear about your brother. It sounds like his parting gift to you was to take it super seriously and live your life. I can hear the hope in your voice and have to wonder what great thing is in your future? You have a great turn with words. Maybe you’ll share your story in a blog here for me.
BTW – I am crossroads on medhelp. It was my hangout on treatment. haha! I still pop in from time to time. A lot of my old friends post here on the blog also under different names. Once I achieved SVR I wanted to help without writing the same answers over and over. I felt like at medhelp that’s all I did. Now I write it once and have thousands who connect and get the tidbits of info that they need.
I’m just happy you wrote. I hope we will stay in touch. You will find lots of personal friends on fb pages also. ihelpckaren is my name and I have a lot of support with cirrhosis.
Keep me posted girlfriend,
xoxox Karen:)
Im freaking out right now my GI sent me for blood work due to my hep c and wanting to go on treatment and my resault came back fibrosure test showed i was F4 meaning cirrhosis now im freaking out
Jesse,
Go ahead a freak out for a while. It’s shocking news, especially in the beginning. The good news is that you are going to get rid of the virus! Your liver will get a break and you can begin to heal.
I’m glad you stopped by and are getting some information. You DO have options about how to eat well and keep your body strong. I hope that you will be able to start eating a good diet and get yourself ready for treatment. It’s going to be ok.. Freak out and then start an action plan to get on with the rest of your life. You can do this!!!!!
xo Karen:)
Karen,
I have a daughter 27yr with end stage 4, 6 mo ago she was feeling pain went to emergency but did not feel urgency to stay. She also has hep b, she was bleeding from her teeth swollen, I took her to dentist only thought it was gingevitas & her ankles were
swollen as well thought it just might be water retention After I took her I told my husband cause the prognosis was the liver & I think she is angry @ me cause she does not talk to me she talks to my husband I cant understand @ the time she went to emergency the 6 mo ago why she didnt stay she is a big girl & at the time cant find a Dr you need to go right away, the Dr told her the liver was heavily damaged 25% chance slim chance. But hopefully things can turn around without the alchohol.
Linda,
It sounds like she may be deal thing with Hepatic Encephalopathy. Please see my youtubes and blogs on that.https://www.ihelpc.com/hepatic-encephalopathy-a-hep-c-and-cirrhosis-nightmare/ . I know you must be in a lot of pain right now watching your baby girl go through this. She loves you and knows that you love her. She’s just so sick right now and can’t break out of the fog. You can stay closer to her if you don’t give advice. I know it’s hard. Will she go to a 12 step program if you or her dad takes her? Let somebody besides you giver her advice. Then you can just support and love.
I’m joining with you in prayer that she can kick the alcohol and give her liver time to heal. I hope these ideas help.
Hugs and love, Karen
How about Liver Failure…
My husband has gone from End Stage Liver to Liver failure according to his team.
30% function of his liver.
Sherry,
I’ve been watching this on your Facebook. Have they added points to his MELD score? This is usually what will improve his chances of getting a transplant. It sounds so crazy to think that you have to get worse in order to get transplanted.
Have they changed his treatment plan at all?
Once we hit end stage, it’s important to get the best of care. I know that you are good at advocating and keep asking all the right questions. Let me know.. kk? I check on here more than anywhere.
xo Karen:)
Thank Karen.
They are treating the Hep C right now and other than that plans on scans and treatment. We live 5 minutes from the hospital and things are changing now they know he has varcies through his body. They have not added to his score at all. First tx team messed up and did not seek the exception point. He is very low in numbers. Thank you.
Hi Sherry, my name is Dee, I am a friend of Karen’s. Karen was called early yesterday morning for her transplant. They thought it would happen sometime yesterday. I just received word that it is happening now. I will get back to you asap. Dee
Very informative post.Thanks.
Hi Karen,
We just got a call yesterday informing us my 16 y/o nephew has cirrhosis of the liver, stage 4 (end stage). We are devastated and don’t know what to do. We have not gotten any guidance and don’t know what to do. The doctor just mentioned diet and exercise but no specifics. I have been searching for more facts about the condition and none of what I read sounds good. Please advise.
Wishing you well on your transplant.
Thank You –
Oh my gosh, 16? This is truly awful. How did they determine he has cirrhosis? Did they do a biopsy? Ultrasound or blood work? The first thing I would do if it was my child is get a second opinion and also at the same time change his diet.
In order to help his liver work better I would get him to start drinking water. He should stop eating read meat, fried foods processed foods. I don’t mean he can never have them again but he needs to eat fresh veggies, fresh fruits, whole foods.
Again, I am just shocked that at 16 he would have cirrhosis. It normally takes a very very long time to get to cirrhosis. It took mine 30 years. I was diagnosed in 2009 and am much improved. I am so very sorry about this.
Take Care
hi Karen
Thank you! My brother got diagnosed about 2 months ago with stage 4. He actually almost died the beginning of June from not getting medical help soon enough. Long story. But we prayers and believed he’d make it through. Through the grace of God he did! Was a mess for awhile, then spent a few weeks in nursing home. Has amazed everyone. He was discharged today and new the journey to heal will really start. He is temporarily living with me and my family to get more stable. He has a great attitude and is sure he will be fine. I believe he can also. I need any and all help I can get on how to get him started on a good path to heal. Thsnkfully hes got the first step down. Which is attitude to get well. But unfortunately he’s not real resourceful or super proactive. Doesn’t even own a computer. What can I do help? Thanks you?
Hello! Oh this is wonderful news to wake up with, thank you so much for sharing! There are some good ideas for recipes even fast food if you go to the upper right hand side of this page there are Liver Loving Recipes, it is a drop down menu. Your brother should stop eating any red meat, fried foods as well as processed foods like TV dinners or lunch meats to help his liver work better. He needs to reduce his salt intake as much as possible. He also should drink alot of water, again to help his liver function. I have cirrhosis and have been able to improve my health quite a bit. Karen is still recovering from her liver transplant so I have been helping out. My name is Dee, it is really nice to meet you. Thank you for writing in. Here is the link to see the diets. If he could he should try to walk every day. This will help his blood flow and general body function. I hope some of this has helped you. You are a really good sister to want to help him. Please ask any questions. If these tips aren’t helpful, you can also look up heart healthy diet, that would be good as well.
https://www.ihelpc.com/liver-loving-recipes/
Hi dee!
Thanks so much for replying! I will print off a lot of those recipes. I try to not be scared but I just don’t to lose him! This has been a scary couple of months. Doctor isn’t suggesting liver transplant at this time. Says his body is too weak with no muscle mass. He was severely malnourished. So continuing to work on that. He is having a lot of stomach fluid built up. And gets that drained weekly. So that makes him uncomfortable to eat. I’m hoping now that he just moved in with me for a little while I can him on soups and protein smoothies since that takes less digestion. I just worry after he’s on his own again.
Hi there, I think while he can be with you he could learn what he could eat. Everything that we eat, drink, apply to the skin or even eyes is processed by our liver. Thinking that way we need to think before we put anything in to our liver. We need to be kind to our liver. It sounds as if he needs protein if his he is malnourished with poor muscle tone. I am now trying to limit my salt. Even after all this time I just learned that from Karen. Salt and sugar not our friends ha ha. There are many times I don’t feel like eating so I will make myself a protein shake with some fruit in a Bella blender, it was inexpensive under $30. I got mine off of Amazon.com Karen has some ideas for that here if you are interested https://www.ihelpc.com/protein-shakes-for-a-healthy-liver/
I don’t know if you all need any financial help but I just gave this information to another gal. It is a place where they are supposed to help with any kind of illness http://www.panapply.org I don’t know the particulars but thought I would share it with you just in case. You can also look into your state or even churches. I hope everything works out. You are very kind to take the time to take him in, look for information. I will be thinking of you. Keep in touch, Dee
Hi dee,
Thanks so much for the resources! I will definitely be looking into them!
What are the thoughts on caffeinated coffee being liver friendly?
Thanks,
Amy
Hi Amy, you are very welcome, sorry for slow response. I hurt my back so am having a hard time getting around.
I wish you the very best. Dee
My brother was told he has cirrhosis, en l arged spleen ,has some yellowing of the eyes ,all his lab work was high,he doesnt complain of any a bdominal pain or really any thing ,works a full time job ,golfs everyday,getting ready to have the scans done so he can be scored ,with everything ive read it sounds like he would be a stage 4 ,, but he has no pa i n anywh e re but his l a bs are four times what they should be and is ammonia level caused confusion so were working on getting thst down even though he only had mind confusion for abot 12 hours, im really scared because im a drinker also but have n e ver had an elevated enzyme yet and do not have h err p c and neither does my brother,we have both decided to stop drinking completely if you have any advise or questions please email me thank you,pam
I’m glad you stopped by and hope that the information helps you. The stages can overlap and go back and forth. But once HE sets in, you can be sure that other things will follow. Pain is not a typical side effect until end stage. Then it is more of a feeling like your liver weighs about 50 lbs.
Hepatic Encephalopathy can come at anytime, but mostly during the last stages. I have a youtube on xifaxin for HE. Check it out. Also, I applaud you both for stopping drinking. That is going to make a huge difference. I have known people to live for 20 years AFTER hepatic coma. With medication and no drinking, you can have a good quality of life. All my best to you on your healthy journey. You and your brother have all my love and prayers.
xo Karen:)
Hello Everyone,
I’ve been going through something odd lately, this all started back in April of 2015. I came home on a Monday night, felt tired and just decided to go for a nap. Woke up with stomach pain and black tarry stools (Thankfully) they went away. I then started experiencing what appears to be Cirrhosis symptoms. I’ve gone for countless blood tests, ultrasounds, CT scans (With contrast and without contrast). I then have a endscpy and colonscopy. All came back normal. Something very ab normal is going on, doctors now keep trying the (Aniexty) card. I now am suffering from insomia. Went from being 190 pounds with muscle to 175 (Up from 165). I’ve tried the psycologist and they want to start me on sleeping pills (Not going to take them incase I have liver diease). I’ve noiced I’m not disgesting fat properly, and noticed markes on the nails (I assume vitamin deficiencies). Also having the tell tale signs (Fatigue, upset stomach with certain foods, mood swings (HE). I started drinking coffee (Using it as a lacitive). I changed me diet now and I quick drinking, join AA. I was only a weekend drinker (Friday and Saturday). I’m only 26 years of age and I believe I might be in the Stage 3 or 4 category. There are no signs according to the doctors that would make them belief that is the issue. The symptoms are real and they’re scary. Just had my first daughter back in May. I didn’t know I was fighting cirrhosis, didn’t have these symptoms until recently. I’m scared and I’m fighting this without the help I need. I’ve tried countless hopsitals and tried reaching out, even filed a complaint for one hospital. The board reviewed my case a stated “There was no evidence of cirrhosis”. It’s not necessary to send me to a specialist. I feel like and idiot for doing this to myself, not to mention my daughter will probably grow up without me. I’m in a fight for my life! I know what is killing me but the doctors don’t believe me. On one accasion when I had a Complete blood count ran I had low white blood cells, not to low but a bit lower then the range. It was flagged on the paperwork but the doctor didn’t tell me about it. I now know this is a known issue with the spleen. Keep it mind I have no signs of portal hypertension. I’m going to get on a high calorie, plant based diet, with tons of fruit, and I drink a ton of lemon water now. Has anyone else had an extremely difficult time trying to figure out what’s wrong with there liver? I know it’s the liver, I drank like a dum young kid when I was growing up. Didn’t start drinking until I was 19 / 20 ish. Sad how is six years I could be advances cirrhosis from drinking (Keep in mind I only drank on the weekends). Boy do I even regret what I’ve done to myself. I have no answers, family doctor won’t send me to a liver specialist because my lab results are normal. Any thoughts?
The liver is such a crazy thing. Everyone can have different sets of symptoms. I would be sure and ask for another opinion. What did the board base this on? No evidence of liver damage? Sometimes doctors will pass you by if you appear to have an ongoing problem drinking. If you are dedicated to sobriety, keep pushing for more medical attention. Unfortunately, if you are determined to drink, the doctors know there is nothing they can do for you.
I personally think that family DNA has a lot to do with why some liver disease advances more quickly for some people. My family has a history of weak livers. It’s one of the reasons I never drank. Let go of regret. It’s a negative emotion that will hold you down from getting better. Go to the Best Friends Start Here page and look up a blog on how to change your thoughts. I hope you can begin all new dear friend. I’m pulling for you.
With love, Karen:)
My brother in law has c o t liver and is sick but his eyes are so very clear…no yellowing ..so what does this mean..Isnt that a sympton??
You’re sweet to be looking out for your brother-in-law. The symptoms can be all over the map. My liver actually failed and I did not have yellow eyes. My sister always teases me about it. My skin got yellow, but my eyes not so much. The doctor will probably give his liver a “stage”. Please go the the “Best Friends Start Here” button on the right and read about that.
I hope your love and family support will help him get better soon.
xo Karen:)
I just want to let all of you know that my husband was on waiting list and received his first liver transplant on 2003 and then another in 2006.. He contracted hep c from a blood transfusion . Keep positive and make yourself get up everyday . Focus on doing things for others . He is doing well now with non threatening symptoms. Keep checking your blood work once a month . Milk thistle also helped my husband ..I will say a prayer for all of you hurting…
Hi, thank you so much for sharing, this is wonderful news. I had a friend who had HCV, I had lost touch with her and was looking for her, she had moved and changed her number. I was looking all over, I finally found her through her husband and daughter and it turned out she had just had a liver transplant. I had heard that coincidence is God’s way of being anonymous, I believe it after this experience.
We are so much stronger together. Congratulations on your husbands great news!! Please keep in touch and keep sharing, Dee
Hello, this blog has me in tears. Hearing some of your stories makes me feel hopeful. A dear friend of mine has cirrhosis stage 4. About 5 months ago the doctor told him he is going to die very soon if he didn’t stop drinking. Well he went to rehab in July. He didn’t take his meds like he was supposed to. When he got back he was so confused, lost a lot of weight, could not think. Everyone thought it would pass but it kept getting worse. He went into the hospital and they kept telling us his health is declining quickly. He was in there for 3 weeks. The day he came out he was like his old self. But the day after and every day ever since he has been confused, sleeping constantly, or wide awake and wandering, tells us stories like he’s been on a ship for a few weeks, gets very angry, repeats himself constantly, feet are swelling, can’t say what he’s thinking, can’t make it to the bathroom and all sorts of things. He has 24 hour home care but he is just getting more difficult to care for. Does this sound like he does not have much time?
What a good friend you are! I honestly saw my dad, who was an alcoholic, go into a hepatic coma for over 3 weeks. He eventually got on lactulose, quit drinking immediately, and lived almost 20 years. We had wonderful times of healing for my family. Miracles can happen when the right steps are taken. I’m sending you all of my love right now. xoxo Karen:)
He has been on lactulose for 5 years now. He never really took it faithfully. Now that someone is doing for him he is actually taking it like he is supposed to. This is his third coma due to this disease. I just feel kind of not so posotive about it.
Oh…dear one, I am so sorry for what you both are going through. I found that taking lactulose after a full meal really helped me a lot. The lactulose did not hit my system all at once so I didn’t get the dreaded run to the potty. Consistency is key. He must take exactly as prescribed as only his doctor knows the shape he is in. Has he spoken to a nutritionist or looked on this site for ideas, under liver loving diets? This is just for me but I only drink filtered water to help my liver work better. No read meat, no fried foods or processed lunch meats, limiting salt is a good idea so you don’t have to deal with fluid build up. Lots of veggies and fruits. My breakfast consists of a protein drink with fruits, veggies and almonds. Funny how you can’t even taste the kale and apples make things taste sweeter. I mix anything in there I can think of, strawberries, bananas, blueberries. Some days it is delicious, others not so much but I tell myself it is good for me. I found a Bello or Bella juicer for under $30 that liquifies everything, even celery, nuts and carrots. I drink it right down, there is no pulp to deal with, and feel I have done something good for myself. I have met people who have changed their diet and changed their health quite a bit. It can be done. Baby steps is all it takes. I also take daily vitamins, no iron. If iron sensitive, then watch the spinach in your drinks.
If you look in the upper right hand corner of this blog there is a drop down menu called Liver Loving Recipes, it gives great ideas. There are a lot of diets out there, heart healthy diets are good to try as well. Hang in there my friend, united we stand, Dorene/Dee
Hi all,
Any thoughts on care for my brother???
Health insurance is saying they’re terminating coverage of nursing home care because of progress in physical therapy he’s made. this happened also in July. I knew he couldn’t be safe and care for himself alone so I took him to my home with my family. It was hard. And even though I gave him his meds daily he had another ammonia rise and was back in hospital a week after discharge from nursing home. Long story short, he is not cognitively safe enough to be on his own. I have young children and a job- I can’t care for him. He’s not able to be eligible for county assistance and his private health insurance is denying. Nursing home care is $240.00 a day. He doesn’t have money for that either. I am appealing the insurance decision but I’m still trying to figure more options out for long term care for him. He’s in no shape to care for himself. plus because of his mental confusion, the courts put guardianship of him to me and my other brother. So he’s not even his own decision maker. Thanks for any help or suggestions.
Oh my gosh, this sounds awful. What I am getting from you is that they feel he is fine once they can get him on a regular dose of lactulose but once that happens then he doesn’t fit the criteria of someone who needs help. Would you mind telling me what state you live in? I could try to see if there is any state of county help, patient advocates groups and also talk to some friends that I have met through the internet.
I know that there are people who can come to your home to make sure you take you medications but every state is different and some states don’t provide much. When my elderly relative was having problems taking her medication I would stop by her home every morning on my way to work to make sure she was taking her medication, which mean watching her take it. Then we had meals on wheels deliver her lunch and a cold sandwich for lunch. Of course that presents problems because there are times the patient thinks they are just fine and don’t need any help In her case she had Alzheimer and had to take her medication or could be found found walking her neighborhood lost and without a winter coat on. Half of the family did not want to get involved the others were in deep denial. Where we live there is a place called Adult Protecttive
services and they will come to the home and evaluate the person to decided what can be done to help. They were run by the county not by the state and were trained to evaluate each person individually. I hope some of this might help you. I don’t know if this would apply to your brother but have a friend whose husband was a plumber, she has been able to get into assisted living based on the fact that she is a widow of a deceased plumber. Please keep in touch, let us know how things are going. I would be willing to take your this convo off line to talk to you in an email/in private if you prefer. Even if we just start with the state it could help others.
Take Care, Dee
Thank you dee for all your care! We live in WI. I know once he can get on state he should have more resources. Everything is just such a hard process…
Hi I found this about WI https://www.dhs.wisconsin.gov/viral-hepatitis/hcv-program.htm
There is also this PAN Foundation which helps as well
https://www.panfoundation.org/
If this is not good for you please write back, don’t give up. There is a lot of help out there, people just aren’t aware of it.
I wish you nothing the the best
Take care, Dee
Thank you so much!
Oh sweetie, I know how hard it can be, I treated for the first time in 2008, treated for 48 weeks. It was tough but I did it. Then in 2011 I tried again with a harder tx, this time it was only 24 weeks and it worked. I have been cured now since 2012. Finding a doctor you like and trust, all the paperwork, preparing for txd, getting through it was hard. Back there there wasn’t a lot of help. Now there is a lot of help.
There are many organizations and help site like this one, Just be careful. You should never have to pay for anyone to help you. There are patient advocacy organizations. Many drug manufacturers offer reduced or free care depending on your income. I was very lucky. My co pay would have been $200 a month but I did not have it, they all helped me so I had to pay only a small amount. I wish you a lot of luck, please keep in touch
Dee
Thank you so much again Karen for this site! I am wondering of anyone having success with taking activated charcoal for cirrhosis. There’s very hopeful studies on it in Britian. I am going to talk to my brothers doctor about him taking it. And just wondering about anyone here. My brother was diagnosed with stage 4 cirrhosis. He’s been alcohol free for almost 5 months and very stable now again, but well you know, it’s ups and downs medically and emotionally and a still quite sick…
Thank you.
Hello there, this is an interesting question, I have taken it for gas. Never thought about it for the liver so I looked it up. Mixed in with ads I found a hospital writing about it. Here it is for you to take a look.
https://lahey.org/Departments_and_Locations/Departments/Cancer_Center/Liver_Cancer_Center/Ebsco_Content/Cirrhosis.aspx?chunkiid=909672
It is common in liver failure to be irritable and confused . Encepholapathy not sure is spelling is because the pneumonia levels from the protein he eats cannot be digested and the levels reach the brain and cloud thinking . This is only temporary . My husband takes 40 Mil. A day for depression and irritability – it held a lot. I know mess make you tired but he has to keep taking them . And yes they told my husband numerous times he could die and he has lasted a long time . Cut down on sodium, take milk thistle supplements and ask for his blood levels when they test him and see how levels are . If he’s getting better or worse . Leg swelling furosemide again not sure is spelling can take away some of the water. Keep hopeful . I know what you are going through and I got through it although not easy…
Hello there! Thanks so much for sharing with all of us, it is very helpful. Cutting down on salt is very helpful. I always tell people to drink water unless their doctor advises against
Have a great day Dee
I know my blogging sounds like rambling but let me give you another thought. The liver can be affected not only about alcohol but also any infection at all . Make sure you wash hands and especially when visiting Drs offices .. Any infection in the body or virus can cause liver functions to spike even a tooth ache make sure you get cleanings 2 times a year and have cavities fixed. Even when my husband has a cold his numbers spike. Because I’ve been dealing with this for over 10 years , I have learned a lot and I also believe that once the virus has been gone . It stays dormant and can become active again so stay away from alcohol excess pain medication . One more thing . When your liver is failing it doesn’t process medications therefore it is easy to is od . When my husband was at hospital after 3 years from his first transplant he was confused and kept saying his pain levels were a 10 and they actually put him in a coma from morphine ugh but I live in kc and he was lifted lighted to Omaha Nebraska it was only close place my insurance accepted .. That place was amazing for both transplants keep the faith …
Hello there! How are you? While ingestion of various types of foods, lotions, evey eye drops must be processed by the liver; the worst thing for the liver is the continued assult of Hepatitis C. Until that is cured it can not improve in any way.
I had HCV and was in the begining for cirrhosis, the very very begining. 4 years ago I was cure. my doctor an all of his colleagues as well as scientists in the research filed are calling it cured.
That is the first thing you must do. Of course eating right foods, cutting out red meat, fried food, processed foods, shell fish, salt can help; as long as the liver is under attack by the HCV that is the main enemy. I believe dormant HCV is an old world used when the viral loads were low. Now much more is known, people can have can low viral loads but lots of damage as evidenced by their liver biopsy or low level of damage and high viral loads. As no time is HCV inactive or dormant unless you have been cured. You can google this information very easily
I hope you are cured, I pray you are cure like I am. Bless you dear friend, Dee
Takes celexa 40 mil a day sorry left it out…
Hi I am 42 and just had my gallbladder removed at the end of May. They did a biopsy and I am in stage 4. I have not had a drink since May and I really don’t know how to feel. Some days are wonderful and some days I am very sad because I feel the end is near. I don’t have symptoms except neuropathy in my feet and legs. My gastro Dr told me he is going to see about getting me tested to see if I qualify for the list and hasn’t told me anything else. I go for my first blood tests since my surgery on sept 14 and I am hoping I can be given more answers and how long I may have left. Just so u know I have always been very petite and have had eating issues for the past 4 years and they finally figured it was my gallbladder. Now this. I eat like a horse now and it’s really just anything I can eat. I have never been a healthy eater cuz I am small 5’4 110 lbs. so having this appetite is amazing but that’s the only thing that is making me happy with all of this. Just so confused about how long I have left to be w my children. Thank u for his blog. I don’t know how I found it but hope to be able to save it. Tami
It can be so depressing to get news like that. You’re so very young. Honey, you can beat this. By not drinking and eating healthy, you can go for another 20 years. It will take a liver loving lifestyle. You may have to take a beta blocker and lactulose eventually. But with a healthy low salt and healthy protein diet, it is possible.
Poke around here on the blog and see if you can find any new ideas to replace the ones that are keeping you down. You can raise those kids. You are going to beat this. Love and hugs to you today. xoxo
xoxo Karen:)
Also I am eating like a horse but not gaining weight either. Is this a symptom of stage 4 or maybe my body adjusting to digestion without my gallbladder?
I know of many people who lose weight after a gall bladder surgery. I also dumped weight easily when my liver was stage 4. It was really hard to put it on. Metabolic systems are certainly a mess. Try to eat several meals a day!
Thank you Karen for your suggestions and words of encouragement. I am usually a very positive person but having little to no answers yet it does effect my daily mood. Hope your recovery is going well since your surgery! God bless you!!
Hi There I may have gotten confused, happens to me a lot ha ha. I know how it can be sometimes trying to be optimistic and I am have always looked to Karen for her optimism. She has the ability to always bring me up. I have always thought that I I could over come a lot of things but sometimes the waves come so fast and hard that I can barely breath
She recently wrote this and I thought you might find it helpful, I know it did me, Dee
https://www.ihelpc.com/post-transplant-nervous-breakdown/
https://www.ihelpc.com/post-transplant-nervous-breakdown/
I meant to ask what are the steps after my blood tests since the biopsy? Do I get my meld score or does the transplant team figure that after I’m sent to see if I even qualify? I understand your not a doctor but was hoping you may have some answers or can direct me to a sit that does. I have done a lot of research but can’t find any of this info. Thank u so much for any help.
Hello there, there is a formula, they take your blood work to figure it out so not hard. Here is the forumula, just get your blook work, enter the figures and this should work, let me know! Good luck, Dee
Hi I am so sorry I thought I sent the formula to obtain your meld score, I don’t see it now but sometimes I can’t see the forest for the trees 🙂
http://reference.medscape.com/calculator/meld-score-end-stage-liver-disease
Thank you so much Dee! God bless you!
AWW, you are so welcome, thank you for writing. really nice of you.
Hi been doing some research.trying to figure out where I am with cirrohis stage 4.
Had Hep C. did a 3 month treatment with Harvoni and I am free of the virus to date. I have two more tests to confirm its totally gone Oct and Jan of next year.
but I am at stage 4 now I need to be checked for cancer twice a year.
I’m always tired. I can sleep 8 plus hours but I get up and still tired. within an hour or 2 I go for a nap which refreshes me for about another hour then tired again. is this normal. also on occasion I have a upset stomach or a warm feeling in my stomach. again is this normal.
can someone relate. I still work it can be physically demanding and lots of fast-paced pressure.
Still tired started vitamins but I see no difference.
help
Hello there! It sounds as if you are still recovering. When did you finish the treatment? Despite the fact that this is easier than when interferon was part of the regime; this is still a strong drug. Try to help your liver as much as you can, drink lots of water. Cut out red meat, fried and processed foods. Try to eat lots of veggies and fruit. Karen has a drop down icon in the upper right hand corner that has liver loving recipes. I drink a protein smoothie every morning mixed with protein, yogurt, fruits veggies nuts, etc. Taking a multi vitamin without iron is good. There is a wealth of information here. Try to go for small walks every day, if you can. Be kind to yourself, rest when your body needs it/tells you to, that is when you heal.
It takes time, that is the one thing doctors don’t tell us. Oh, I am not a doctor just another person who is healed of HCV going on 4 years now. Did I mention water? LOL
Good luck!!
Thankyou have looking at recipes.
oh treatment done in may of this year.
I can’t be too kind as I work late hours and am tired at work but Idespite it all I do try to be active but I’m in a slower rate than normal. I push on no choice
I watched my husband die of this and it was horrible. he wS only in his 50s. so I’ve seen a lot of negative horrible things and hopefully I don’t experience the same thing. it us nice to talk to someone who has done treatment and is going through some of the same things
Honey,
I’m so sad that you lost your husband to Hep C. This must be really hard for you after watching what he went through. When I don’t feel good, I have a few easy to make things to eat over and over. I hope you look at my blog here. https://www.ihelpc.com/here-is-a-sample-of-daily-liver-loving-diet-menu/ When you’re tired, just do your very best.
It doesn’t matter how slow we go… just keep going… ok love?
xoxo Karen:)
Hi Karen
Thank you for your kind words. even though my husband was on harsh treatment his body couldn’t take the drug. He had this longer than anyone knew about hep c so his liver was beyond damaged; jaundice was already present he was on a transplant list actually called for one but the new liver was not viable so it was a no go. Then cancer came into play so transplant was taken off the table. he sent the coast three years if life with a teach and more times in hosp than out. I was his primary caregiver. I worked from home so I was able to do whatever was needed to take care of him even though he had nurses every day for over 3 years. My point to this after watching what cirrhosis did to him I put myself in the same category. My hep c may be gone, again 2 more blood works to say definitely but for now yes gone I’m not elated. don’t know why. I talked to my docs. and it seems after going through this treatment and being at stage 4 this will in the end still he a huge issue. cancer could be a issue and in about 20 years or less I will be end stage liver disease so why did I go through treatment only to probably die from the disease ? In 5 plus years. I don’t feel lucky. I do have brain fog as they say. I’m on my own and this scares me bleeding out which I’ve seen scares me. I have children but they not around to help. The are really self absorbed people. I’m depressed unhappy gave swollen ankles a little too much weight on me and use I don’t eat well at all.
I’m happy that I can talk to people who have the same thing in common. I’ve been hiding my illness for 13 years now and still have to. I don’t speak to people about what I’m feeling .
I did see some recipes to cleanse my liver going to so try it when I get paid . and will do some meals even though I rarely cook for myself I am alone
Hello there, I am so sorry to hear that you lost your husband over a long period of time. Please don’t think the same will happen to you.
Karen had cancer before her transplant, they did a TACE procedure to give her more time. She was on transplant list and went through two false starts where they called, she was ready but someone else got the liver. The third time the liver was too big but a few hours later they had one. Please read her stories about her transplant and what she experienced. At the top of the page on the right side there is a liver loving recipe drop down. Try to drink as much water as you can, that is all I drink, well a little coffee 🙂 I had HCV, went through treatment twice. The second was worse than the first. What did you take? It sounds like you recently finished tx. Even though the newer meds are shorter duration and supposed to be easier their purpose is still the same, to kill the virus. I had brain fog for a long while like many others. I was told to walk a little every day. I wish I had done that, I think it would have helped. I have now been cured for almost 4 years. Some people feel good after tx, others don’t. Interferon, Incivek, Ribivarin was awful. As Karen would say we do not have an expiration date on our foot. I was told if I did not get rid of the HCV I would need a transplant in 5 to 10 years. I think that was said to scare me, in to the trial that didn’t work, not positive 🙂 Try to do ankle rolls. You sit down and you roll your feet in circles. Does the doctor have you on diuretics? Another good one is to spell the alphabet with your foot. Putting your feet up when your ankles are swollen. As time goes on I believe it will get better. I am not a doctor just a fellow patient who is trying to help. Sorry I am rambling all over the place, I want to help, just can’t organize my thoughts, need some coffee 🙂
Please keep in touch.
How sweet u are. I didn’t know that about Karen. thankyou gir enlightening me. I may not walk ouside everyday but I work 5-6 days 8 hours standing on my feet. it’s a fast food rest so I do walk. but if walking outside is better let me know.
the treatment I had was new Harvoni.
I was blessed as I had no reactions at all. was able to work not a single problem 16 weeks it was fir treatment I’ve been tested once and free of hep c two more to go. one special blood in Oct and 1 in Jan 2016. I do not drink water. I don’t eat healthy but I did try a recipes broccoli pasta quick and easy was yummy. when I’m home which isn’t often I sleep a lot just can’t seem to get enough always tired.putting feet up is indeed hard to do so when not sleeping I’m at work. so I font know what else I can do. I start lemon water and cucumber and mint combined. I go at it hard then I stop. I’m just tired if being tired. after the next two blood works if free that’s great but I am not happy dont know why. I’m tho king that dr said something to the effect I need to be tested for cancer twice a year for the rest of my life and the damaged that has already been done won’t stop me from having liver failure in about 5 plus years 20 at best do it puts me right back where my husband was.
I just feel treatment was for nothing.
thankyou for your comments . I’m rambling now but my mind indeed is not normal for me .
I need a tea
please kerp in touch any help or suggestions I welcome
Oh my you are already doing plenty! I thought you had recently finished treatment. I did not realize you were working. Good for you. Yes, standing on your feet could add to the fluid as well, you could try to put your feet up when you are able. When I treated the first time all I could do was go to work, come home, go to bed, get up and do it all again. I apologize for not understanding that you are already doing a lot.
I guess we all have different levels of damage, when they say cirrhosis it means different things to different people. I was diagnosed right at the beginning of cirrhosis, they saw wisps of collagen which suggested possible transitioning to cirrhosis. That was last 2007. How does your blood work look as far as your liver enzymes, ALT, AST, bilirubin? I think you are recovering from treatment and on top of that you are working your heart out. Give it time. It does get better. I have to get tested once a year for liver cancer and an ultrasound. After I was cured my doctor said I only needed to be tested once a year. He also said that researchers have discovered that once our livers are no long under attack our livers can improve function. Every doctor believes different things but I have seen people improve over time. Hang in there, rest when you need to. It took me over a year to recover, it was a hard tx, I am glad yours wasn’t.
Take Care
Dee
stage 4 is where I’m at …don’t know my numbers but 2 times per year to be tested for cancer. I been aware of this for 13 years could of been longer no clue. but at the end of the days the outcome doesn’t look great
I’m sorry Chris, I just try to be supportive, my heart is in the right place but my foot is often in my mouth
I’m sorry I asked about your number, there is a calculator where you can figure out your MELDSCORE to see where you are. Again I apologize.
Hey there, how goes it? Are you trying to put your feet up as much as you can? I hope so, try to drink water, that is all I drink except for some coffee in the morning. Watermelon is really good to help flush the fluids out. Everyone morning I make a protein drink with fruits and veggies or what ever I have, some times almonds. Not sure if I already sent this or not
https://en.wikipedia.org/wiki/Child-Pugh_score
https://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease
Calculator, not sure if I sent it or not. Try to always get copies of all of your test results, blood work, etc my friend
http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older/
I am a stage 4 as well though mine was found as they think I was transitioning in December 2007.
Hi Chris, I just found this that Karen wrote for HepC.net. I thought it might be interesting to you. I will get in touch tomorrow 🙂 Having some fatigue right now, back surgery 2 weeks ago and it is wearing me out HUGS Dee
https://hepatitisc.net/living/tips-on-battling-fatigue/
See I was told liver is already damaged won’t get better but it won’t get worse with Hep c virus gone.
I jyst get upset thing thst in 5 years maybe a bit longer my liver will fail.
even tough functioning well right now but it will change so he says your right every dr is different.
I’ve watch my husband go through so many things bleeding out ..transplant …then cancer . then off transplant list …then kidney failure then he died after so many years of I’ll health.
for me idk
Hi I just wanted to say that I am having some problems today, had back surgery 3 weeks ago, did too much yesterday. I am not ignoring you I will be back. Do you see a hepatologist? Perhaps I can find a bit about the MELD score calculator. I gave it to someone else on here but the way this blog is set up I have to look for it. Perhaps I can also find you some studies on how some people with low to mid range cirrhosis are healing. Unfortunately this is set up like email and it comes in and I can answer, once I approve it it is difficult for me to find anesthesia brain haha Severely scarred parts of the liver may never improve but low to mid range can regenerate and livers can function with 80% of their liver shot. Again not a doctor, back soon, need some coffee 🙂
Hi here is the Meld Score Calculator. There is also a child Pugh something or other, again, not a doctor. Sorry if I already sent this. Have you looked up signs of liver disease? I think it could be something else and I pray that you find out what it is, Dee
http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older/
https://en.wikipedia.org/wiki/Child-Pugh_score
I just had to come back, I felt the same way, why did I treat when I lost my job? I could not do much at all for a long time. I used to cry about how I went through two treatments, thought things would be better and they weren’t I was raised to believe good things happen to good people, what a crock haha. Since treating I have had many many problems but keep plugging along through two cases plantar fascitis (that is when your feet hurt so bad you can’t walk) two cases of frozen shoulder, now two back surgeries. I don’t give up but there are days I feel like you, what was the point. There has to be a point, I don’t know if it is too help others, or help ourselves. I have to believe.
When I feel like this I read Karen’t blogs, she has been through so much and remains so positive. Not that I can be that great, but I strive for it. I also wanted to tell you how sorry I am for your husband. I am sure it was an experience I can’t even imagine. I have nursed two people through cancer and it was painful and forever changed me. Sorry, rambling again, Karen is going to swat me 🙂 HUGS Dee
please tell me more. I am also a supporter .. too bad I can’t see the light I undestsnd the feet issue. we have more in common than u know
Hi here is a little bit, I have donated to wiki, just ignore it, it will let you take a look for info
https://en.wikipedia.org/wiki/Child-Pugh_score
https://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease
I can’t remember if I asked this, are you retaining a lot of water in your stomach? Do you bruise easy? I would suggest getting copies of all of your blood work so you can compare. I can’t imgane the pain and sorrow that you have experienced watching your husband go through such a terrible death. I don’t believe that you are doing to experience the same and I don’t understand the cruelty of your doctor. My doctor (the researcher) said they are discovering that people are getting better once they get rid of the HCV as well as eat rigth, don’t drink, no red meat, fried food, process lunch meat,s or tv dinners, lower salt as much as you can. I will be back just having a hrd time to day HUGS Dee
U need to rest
I’m sending this so I don’t forget later and besides I will be at work.without treatment I was told I would die. hep c gone to date 2 more blood works to go for that.stage 4 cirrhosis.
was told liver is damaged that won’t change but with Hep c gone won’t get worse. in a few years my liver will get worse even if no hep c.
Thank you for writing. I am sorry my response is so late. On the 26th my husband was rushed by ambulance to the hospital because we thought he was having a heart attack. It turned out to be a gall bladder attack and his gall bladder was removed. He had to have two surgeries in two days. I am just exhausted. I’m sorry. I pray that the HCV is gone for you. Dee
I am so sorry u had to go through this with your husband but thank god not a heart attack.
u need to rest now
Thank you Chris, you are very kind, Dee
Oh boy I just read what I wrote to you Karen forgive the huge amounts of typos I was in bed writing to you. lol how horrible but where it says 20 it’s less 10. can’t rember
I wish I could facebook u would be easier
Hey there! You did just fine, Karen has a Facebook page, she also has an email account. it is hard for her to answer every person but she sure tries 🙂 In the upper left hand corner is a icon that says contact me 🙂 Have a great day!
Well I went to the gastro dr and he seems in no hurry for me to get a Meld score or anything else. I don’t know what to do. He did tell me to find out what hospital my insurance would accept for a transplant though. I know there will be a big penny to pay upfront I’m sure for this even w great insurance so why should I even bother considering I couldn’t afford it? Or is there help out ther that I don’t know about?
Your transplant hospital will help you to look at other options for paying for the out of pocket expense. I hope your insurance will pay well. Let me know when you hear something, ok? That was one of the scariest things to me. I’m muddling through, but have cleaned out savings. The transplant team is good at this. Don’t let it get you nervous. I say that, but I sure did. I cried that day thinking that if I didn’t have enough money, I couldn’t live because of the tumor.
Keep eating well and take good care of yourself. Maybe your Meld isn’t that high? That can be a very good thing. It’s simple enough to ask them to do it though. It’s a combination of labs and tests. Ask him. You have a right to know about staging and numbers.
Love you,
xo Karen:)
Hello Everyone,
Going back on my original email, board found “No evidence of liver diease”. They determined it wasn’t necessary to send me to a hepatoligist. I’ve had so many blood, imaging tests it’s scarring me. CT came back negative. Blood work shows normal liver function, at least the last test showed it. Scopes showed no signs of liver diease. Is it possible that modern technology is missing it? Liver is normal size too! Scary how many people can be going through this and not even know it. I noticed my skin is indenting easily now (Fluid retention), I cut down on my salt intake and informed my doctor. He said “Fluid retention is common when it’s hot outside”. Absolutely agree with that but along with my other symptoms it’s apparent to me at least what’s going on. I got tested for Hep A,B,and C. Came back negative, usually alcohol related liver diease you end up with Hep C if I’m not mistaken. He’s sending me to another doctor for a second opinion. He referred me to a Psychologist who wanted to put me on meds for my sleeping issues, I refused as the liver breaks down meds. My sleeping is messed up, waking up consistently throughout the night now. I quit drinking completely, I don’t want to die! I was a social drinker like so many young adults, the dangers are not expressed enough. My family has weak livers, I’m noticing the symptoms on my Dad, Mom, Uncles and Aunts. My mom doesn’t drink. My dad drinks once a year when we go camping. I’m wondering if I actually have a hederity liver condition of some sort and the drinking put me into decompensated state. Growing up I always had a dry scalp, skin (Zinc def?), and had a hard time gaining weight. Trust me when I say I don’t drink everyday, I’m not an alcoholic. I’m starting AA meetings for one reason, encase binge drinking (Stupid me) caused it. I’m lost as to what to do, I know my body is giving up on me, I have little white dots on my nails (Zinc def), I started taking Multivitaims to try and restore the zinc in my body (Without Iron). I also changed my diet, more fruits and veggies and I’m drinking Boost drinks too. I drink more water now, does anyone else have to go to the washroom every hour or so? I think I’m drinking to much water to be honest. I’ve noticed I have dry eyes and dry mouth all the time now. When I wen’t for my Endoscopy and Colonscopy there were no signs of diease, GI treated me as if I was crazy. If this is Cirrhosis this is going to be become and epidemic is North American within a few years. I’m scared out of my mind, go to sleep wondering if I’m going to wake up tomorrow. I’m not “Living” life anymore I’m just “Surviving”. I hate what I’ve done, use to be an athlete with a bright future, now I’m alone waiting for my number to be picked by a Grim Reaper it seems. Life is to short! This is going to be a long battle I plan on winning! 26 and sick, never saw it coming. Sometimes we forget the most important thing is our lives when we work and eat and drink whatever we want. The liver is a lot more sensitive then we think. Although is regenerates, without us aiding in the regeneration process it doesn’t as effectly as one thinkgs. Just my personal opinion! Anyone else have a hard time getting diagnosed? Maybe this is mental and I’m causing the symptoms but I doubt it. 🙂
Hi there! I am sorry you are so worried. Drinking does not give you Hepatitis C. Only contracting it through someone from blood can give it to you. I had it for 30 years and never knew I had it. I am sorry you are so worried. Now…you can destroy your liver through drinking but that does not seem to be the case for you. Well binge drinking can really mess if up but you have a normal size liver.
If sounds like your blood work is fine and you have had all the tests that would show if your liver is in danger. If you think that some interaction with someone has given you something get your Hep A, B and C done again. I had a false negative on my HCV test but I hear that is very very rare. Not trying to scare you. Have you been to a hepatologist and discussed your fears about your liver? that is a GI that specializes in the liver.
I don’t think the GI should have acted the way he did but I guess he sees so many people who are very sick from their livers not working right.
that he is surprised to see such a healthy person in his office. White dots on the nails, you should look that up. While it can be from banging them or from a deficiency it can also come from a problem with the liver. Do you have any cherry red dots on your upper body? Very tiny. I didn’t even notice mine to a blood doctor pointed them out. I only went to a blood doctor because my platelets were very low. How are your platelet levels? That is a sign of a bad liver. How is your AST? ALT? I am not a doctor, just trying to help. To me you sound healthy but if I were you I would get copies of your blood work. I started saving copies of all blood work. Have you gone for a regular physical with a general MD?
There is something else called Sjoern which a rheumotologist would have to diagnose Take care, try not to worry but at same time only you know your body. What was your first symptom? Was it after you were drinking? Sorry just trying to help. Take Care, Dee
Hello Dee,
I noticed these little red circle dots when I originally got ill back in April, they since have gone away but I took pictures before they did. I do have these cherry dots you are discribing. One is the centre of my chest betwen my breasts. I’m notcing my veins are showing, my hands are wrinkling faster. I have these little red broken blood vessels. I showed the doctors this and they aren’t listening. My AST and ALT are within normal range. I noticed on some lab work done at the hospital I had ketones in the urine and blood in the urine. Also notice my white blood cells were just below the normal range (Spleen having issues?). My liver is under attack there is no question about it, my skin goes from yellow to white, trouble breathing. I notice my skin goes back to a normal pigmentation after I walk or ride a bike. I’m not as tired as I was back when I first got sick but then again my diet has changed dramatically. I’m trying to get reffered to a hepatoligist but my family doctor keeps telling me “There is no evidence of liver diease”. His last comment was “I know it’s hard to believe you’re healthy but you are”. I honestly believe my liver just went from Compensated to Decompensated and it isn’t being diagnosed. I told the doctor I noticed chubbing on my fingers and he dismissed it. I now have another chest infection (Probably pneumonia, this is the second time in six months). I will be coughing up green flem shortly, I’ve had this issue since I was a child. I had the red palm symptoms but it went away as well. They originally said I may have ingested food posion which has thrown my body out of wack. Six monrths later I highly doubt this is food posion. The cherry dots explain a different story, I just started to develope these too. Does anyone else have purple nails? Cold hands often? I don’t know what to do anymore, tomorrow I see the second doctor I hope she’ll listen and i’ll be reffered to a Hepatolist. I’m fustrated with the lack of response up here in Canada. They aren’t trained properly in my opinion. They lack the most basic skills (Listening to the patient). I know my body better than what there numbers are showing. I’m tired of falling apart, never though I would of done this to myself? I hope drinking didn’t cause it. When I saw the GI doctor he said my lab results were normal. I was so scared when they put me under that I asked before they did if the drugs would kill me if I had cirrhosis. Next thing I know I woke up in recovery, felt the best I have felt in six months (Drug induced) unfortunately. I don’t know what’s going on but I’m coming to terms with this illness, it’s about managing it and enjoying what time I have left now. I spoke to a lady that has Stage 3 / 4 and she said they would see it on the blood work, or a ultrasound would show scarring too. Maybe I one of the unlucky ones that they miss it on. None the less I’m only helping myself when I quit drinking.
Hi you are right, you know your body, something is off. When you said they put you under did you mean for a biopsy? Or one of the other tests
If I were you I would try going to a rheumatologist. They seem to be able to catch liver problems good because they run a lot of different types of tests. It could be that it isn’t the liver but something else. I of course am not saying it isn’t your liver. Shoot I had HCV for 30 years before anyone caught it. I was tested for it in the 90’s when my liver enzymes were only slightly elevated, I got a false negative. It wasn’t until my platelets tanked in 2007 that anyone bothered to check it out. I was sent to a blood specialist, they are also called oncologists and I was tested for lymphona, leukemia and another L work I can’t remember. He asked me about the cherry red dots asked if I knew what that could be, I think he knew before he did the tests what was wrong though I can’t be certain. I have heard of something call Raynauds that causes cold hands, not spelling it right. Do you bruise easily, do you know what your platelets are? Have you tried coming at it from a different direction? Not telling them you think there is something wrong with your liver but telling them everything that is wrong? Make a list. Are you saying your nails are PURPLE? That can be a sign you are not getting enough oxygen
I will try to keep looking, please keep in touch. Dee
Hi I found this about purple nails. In the “olden days: doctors used to look at your fingernails to help diagnose you, I don’t think that is done much any more. I had terrys nails which is white at the bottom of the nail with a red line at the top, that is a sign of cirrhosis. My doctor did not know what I was talking about. So, there are doctors out there that are going to be no help and then you will find someone who will listen. I would stop telling them it is your liver. I don’t think you are helping yourself by diagnosing yourself before the doctor does. I would just make a list of every symptom, starting with the worst one.
I found this information on purple nails, it does have something to do with not getting enough oxygen. I would make a list of every single problem you are having and take it to a doctor. If you can’t get to a doctor take it to the emergency room
Please keep in touch, I care, I believe that there is something wrong though I don’t think you have decompensated cirrhosis cause I know people with that. They are on transplant lists. I wish you a lot of luck. Keep fighting, Dee
Dee Ernst recently posted…Feelings About Dying with Hepatitis C and Cancer [1 Video]
Hello Dee, its crazy to me that if its my liver I was able to drink it away this easily. I don’t drink daily, only drank beer. Haven’t been doing this for 30 years, I’m terrified. Maybe I’m suffering from alcoholic hepatitis. That might explain the lack of scarring, I was put under for the colonoscopy and endoscopy. Showed no signs of disease. Which is a good thing as I didn’t need to be banded or anything. I don’t know what’s going on. Looks like I’ll end up doing a biopsy.
With no offense meant what makes you think your problem is your liver? When did you start to feel bad? Were you exposed to someones blood? Did you do some binge drinking and take a long time to recover?
Hello Dee, I been drinking for a while but only on the weekends. I saw the doctor yesterday and she doesn’t believe it’s my liver. She’s testing for iron, thyroid issues, any signs of hormone issues, celiac disease, and ebv virus. I’ve only been with one girl my whole life and she wouldn’t cheat. I’m terrified, lately it seems when I drink water it goes through me. Not understanding what’s going on. I hope some of these tests will shed some light. This is a nightmare that won’t end! This morning I had stomach pains and tingling an my left hand. She said as far as my liver is concerned there is no signs of colligation issues or any enzymes out of wake and the imaging looks good too!
Hi I am sorry to just get back to you, my husband was hospitalized on the 26th and it has been a nightmare for me. That and having back surgery myself has limited my time here very much. How did your test results come out? I am hoping you are closer to getting an answer for your issues, Dee
Hello Dee,
Spoke with the intern yesterday, she said my liver testing looks very good. Blood work done back in July showed no signs of enzyme issues, collogalation issues. My imaging testing showed no signs of diease. If it’s extremely scarred could that be why they can’t see the scarring? She also said you don’t show tell tale signs your depressed. My response was “I’m not depressed, I’m concerned with my health”. Could I have an iron overload condition. If it’s an iron overload condition I’m in trouble because I drank. She’s sending me for some hormone testing, I told her I’m tired alot and losing hair, lost my sex drive. It’s obvious that my issue is liver related because my symptoms are showing something like a liver issue. It just shows that Liver diease is very hard to diagnose if the lab work doesn’t show one. She’s doing a blood test / Urine sample for TSH, Creatine, CK, Ferritin, Iron Saturation, Testosterion, EBV virus. It’s clear my liver is causing the symptoms. I’m having a difficult time sleeping now, dream countless times a night and end up waking up everytime I have one. Usually wake up three to four times a night now. I don’t feel tired though when I wake up it’s weird, I yawn occasionly through the day though. I explained to her I drank a lot when I was younger and partied like a idiot. She asked how much I drank I told her roughly 10-15 beers a week, this isn’t something I’ve done for twenty plus years though. Or even five years, I just started drinking like this recently. I know it’s the liver but I’m hoping it wasn’t caused by drinking, because if it was I have to go to AA for six months before they’ll even consider a transplant. I knew I shouldn’t of listened to the doctors and went when I first got ill. If my health takes a turn for the worse I’m sckrewed because I didn’t go earlier. She said it would take drinking a micky everyday for a long time in order to mess the liver up. Which is incorrect according to many hepatologists. If you have a bought with Alcoholic hepatitis it can cause cirrhosis. Like I said before I think I might have had an underlying liver disorder my whole life. It doesn’t make sense my liver might be shot at my age with my history, unless my family has weak livers or a condition. Worst thing is this diease only hits 10-20% of people who drink chronically or moderatly. I just want to get back to feeling normal and being a dad. I see my little girl smile and I’m heart broken because I don’t know how long I’ll be around to enjoy that smile. She means everything to me and I’m dying in front of her, tearing me apart. When I’m not around my gf I cry myself to sleep. I really messed up here! I noticed a lot of muscle mass lost (Could be lack of Testostorine), comon with liver diease in men. This diease is terrible, what kind of god gives somone the blessing of being a father and then makes the father ill. I hope it’s alcoholic hepatitis I’m suffering from because you can recover from it as long as your liver regenerates. I’m pretty sure I’m suffering from cirrhosis, it’s the only thing that makes sense.
Rob, I have thought a lot about you and wondered how you were doing. My husband was sent by ambulance on Sept 26 thinking he was having a heart attack. He was in the hospital for 5 days, I was exhausted. Sweetie I just don’t know what to say, if all the doctors have said your liver is fine I would go looking elsewhere, your gall bladder? Have you seen a gastroenterologist? I am only saying that because my husband just had his gall bladder removed. He was having back pain, then stomach, then chest, we did not know what was happening. I think you might try going to http://www.medhelp.org. Look under liver, there are many many helpful people. I wish you all the best. I would like to hear how you are doing when you finally find out what this is. Yes your liver can regenerate. Mine has, I had a biopsy which showed the beginning wisps of cirrhosis, the Ultrasound also showed it. Two years later it looks great. Please keep in touch, Dee
There are a lot of different communities there and they may be able to help you pin point what the problem is. I am only one person and feel I am failing you.
Hello Dee,
How’s Karen doing? I hope all is well with her. My symptoms I figured I might as well list below.
Symptoms started in April 2015
1. Black tarry stool
2. One bought of white stool (Haven’t had it since)
3. Fatigue
4. Loss of appetite
5. Noticed I had a red palm on a few occasions (Seems to have gone away)
6. White dots on the nails (Luek)
7. Weight loss / muscle mass lost
8. No sex drive
9. Sleep more than normal (Use to only sleep 5-6 hours and feel rested)
10. Noticed what appears to be liver spots appear on the skin
11. Red circles (They went away)
12. I noticed these red marks (They looks like skin tags kind of)
13. Hair loss
14. Minor chubbing (Not really noticeable unless you’re looking for it)
15. Constant washroom vists (Urine of course)
16. Wake up about three or four times a night while sleeping for no reason
17. Excessive dreaming while sleeping
18. Mood swings (Could be because of the lack of sleep)
19. Broken blood vessels on my skin
20. Fluid retention (Minor) / Easy indentation
21. Skin goes from a normal pigmentation to a yellow pigmention at times
22. Dry eyes / Mouth
23. Night blindness (Seems to be getting better)
24. Upset stomach/smelly stools (Probably a Malabsorption issue)
It’s obvious my liver is responsible, I don’t understand why I can’t get diagnosed and begin treatment. It’s scary that modern testing and imaging can’t pick up on it. Years ago I coughed up blood, i’m wondering if that was the first sign of liver damage. Or do I have Cystic Fibrosis which has caused damage to other organs including my liver. As far as I know Cystic Fibrosis doesn’t run in my family, but you never know.
Hi you do have so many many symptoms, I wish I was a doctor and could help you. You know your body and you know something is wrong. I just looked up your first symptom and came up with this
http://www.healthline.com/symptom/black-stools
I have acute hepc and 3rd stage cirrhosis and was told liver transplant was necessary how many years can I live with this. My mind seems to be going and I’m tired all the time but feel if I stop working hard I will be useless anyways. I have to take lithium and trazedone due to few trips to institution but see no way for me to just stop no matter what
Oh….so sorry to hear this. Are you on Lactulose to help you think? Without it ammonia builds up in your body and goes to your brain.
When you say 3rd stage cirrhosis I am a little confused. There are normally 4 stages to liver damage and the different stages refer to how much scarring and fibrosis there is. A lot of time people call it all cirrhosis. Only stage 4 is cirrhosis. So are you saying that you are past Stage 4? Like stage 5? Sorry I am not a doctor. A lot of times people will say they have stage 2 cirrhosis when actually they are stage 2 in the level of damage. I appreciate your help with this. I was told if I did not get rid of HCV I would need a liver transplant in 5 to 10 years. That was in 2008. I was finally cured in 2012 and I am improving every day. I am not saying it is possible for everyone but improvement is possible depending on where you are in Grade and Stage from the biopsy and/or blood work.
Hi Karen,
I went throught the pegintron/ribavirin treatments for hep c about 12 years ago. It worked for me. But I was left with severe chronic fatigue syndrome. Very long story short, it took years to figure out which diet and supplements worked, I even did 2 1/2 years of heavy metal chelation. I also finally realize now that scarring in my liver is responsible for my symptoms, though I don’t really have any of the classic symptoms of cirrhosis like jaundice, ascites, edema, etc. Anyway, I did not read through every comment above to see if it has already been suggested but I wanted to pass on an idea to you. Enzymes like serrapeptase and nattokinase can dissolve scar tissue and some people are using them to treat cirrhosis. I am starting a supplement with these enzymes in it to see if it will help my own symptoms.
You know, the one word in your article that literally gave me chills was “decompensation”. I have only heard that, and rarely, in connection with adrenal fatigue and chronic fatigue syndrome. I have experienced what can only be described as a “quick decompensation” a few times in the past thirteen years from exerting myself and it is the most horrible feeling on earth, it is absolute torture. And after the first time, you know that when it happens you are looking at a couple of years of effort to climb out of it. My whole life is centered around making sure I don’t ever decompensate fully again like I have those previous times. I used to do taxes and accounting work but now I’m on disability and living in the Dominican Republic because domestic help is quite affordable here, even on disability.
I am thinking now that chronic fatigue syndrome involves the liver more than most people think. Every food and supplement I take is with the liver in mind. I’m glad you have this article and I just wanted to make sure you were aware of this enzyme approach to cirrhosis. Thanks for the article and good luck to everyone struggling with this.
Hello there! Thank you so much for sharing. I have also heard of the systemic enzymes. I have tried them in the past for months at a time. I also did the peg and riba and I suffered for years with fatigue, lethargy, it was awful. I thought I would never be well again. It has now been 3 years and I am feeling better, that or I have gotten used to the new me. That would explain my mess of a home LOL.
About the decompensation, if I were you I would look in to that more. I have heard of people who completely change their diets, no read meat, no fried foods, or fast foods, or processed foods improving the health of the their liver. Also, a little exercise is good, even 10 minutes a day can make a different. I walk every day in the hope that it will get my blood flowing and make me feel better. Interferon is awful, I lost all my hair and it took years to improve. If you would like to talk to others in similar situations there is a site called MedHelp, Post treatment. Also I took NADH for a long time after treating, I think that helped me.
Thank you so much for sharing. Your story can help others, good luck, Dee
Hello, thank you for this blog it has help give us some hope! My husband was recently diagonsed with non alcoholic fatty liver disease due to elevated liver enzymes which we went in for diabetes check because his fathers side and the test showed his liver numbers were high. While waiting for an appointment with his doctor he started developing pain on his right side so we went into the ER and it showed inflammation. We were scared and his doctor put him on a drastic diet of two liquid meals and only veggies and little protein. At first his number were elevated after a week of being on this diet and then they started to drop a little. We started to have hope that this was fixing the problem. Then they ordered an ANA test and that came back elevated so they said he had an autoimmune disease that is either triggered by fatty liver or cirrhosis. We were devasted to hear that hear word since my mom had passed away from that disease three years ago. We have a biopsy scheduled in the next couple of weeks. I am so scared of this being cirrohsis and everything I read is doom and gloom. We have a one year old son and I am due in February with our second boy. So I’m sure my pregnancy hormones are also contributing to my intense worry. We have received much guidence or diet information. Any advice would be so greatly appreciated!
Hey there! I understand your fear. When I was diagnosed with the beginning of cirrhosis in 2007. I was scared to death. I thought it was a death sentence. It wasn’t, I am still here healthier than ever. In my case I had HCV. My doctor told me that when the thing that is attacking your liver is stopped it can improve. If I were your husband I would stop eating red meat, fried food, processed lunch meat. No alcohol of course. I drink lots of water. On the other hand I have a friend who has NASH or NAFLD and she does not watch her diet, she has pain in upper right side. She also has diabetes. I think she is now retaining fluid. She just could not stop. I noticed beer in the fridge, didn’t say anything. What is there to say?
There is a site on MedHelp where a guy there was able to help his liver tremendously, it is Medhelp cirrhosis forum. I think his name is AndyHawaii. He has been able to turn his life (liver) around by changing what he eats and drinks.
I wish the same for your husband
Good luck
Dee
Hi Dee! Thank you so much for finding that link and for replying to my post! It gives me hope and encouragement for my husband! When he spoke to his doctor they brought up the words PBC which he could possibly have but only the biopsy can tell. I am working on my strength and support for our family and for whatever lies ahead with him. These words of encouragement and positive thinking are helping to build that and for you to take the time to respond I am so grateful for! We great appreciate your advice and your story and we will be praying for you as well! Thank you!
Hey there! Thank you so much for the nice reply I am out of town this week but will return on Thursday evening. If you have any questions please don’t hesitate to write to me and I will try to find the most knowledgaeble people to help you. There is another group that Karen recommends HCV-Advocates and also a nurse has a site, her name is Lucinda Porter. If I were home I could give you the link. Sorry about that. Write back and I will get more information for you Friday morning. It is a very scary time, I completely understand the fear. When I was diagnosed I thought it was a death sentence. Then I found MedHelp – Cirrhosis and Hector SF was so helpful as were many many others, to many to name here. He has been through HCV, liver cancer and a transplant. He is my hero. Hang in there, my brain had trouble wrapping my brain around the diagnosis so I can imagine how you feel. I could not discuss it for 3 months without tears. My best to you and hubby
Dee
Hi I found the link I was talking about this guy was very sick, turned his life around with diet. I wish the same for you
http://www.medhelp.org/posts/Cirrhosis-of-the-Liver/how-to-do-better/show/2339187#post_13508453
Please hang in there, it is not all gloom and doom. Right away have hi. Drink more water. Try to eat as healthy as he can I may be repeating but for awhile Karen ate oatmeal, fruit and veggies with a protein drink. He wants to make sure he gets enough. No red meat, fried foods or processed lunch meat. Everything we eat drink put on our body has to be processed by the liver. It sounds as if you all are young. You have that going for you. I only eat chicken or fish, no pork. Hang in there it will get better
(WOW just found all these typos, it is a wonder you could read) I think we were all terrified when we first found out. To my inexperienced mind, it sounds like your husband has a very early case. If he wasn’t suffering from symptoms just going in for a check in perhaps the medication will help him right away)
Good morning Dee,
Thank you so much I needed those kind words this morning! We go in for the biopsy this morning we are praying for the best but I have had lack of sleep the past couple of weeks. We completely corrected our diet like you had said and going exercise alot more. My husband is 26 and he is staying positive and strong for both of us I just got diagonsed with anxiety and with my pregnancy it has escalated all my emotions but are getting by day by day. I appreciate all your support it means alot to us and it is nice to not feel alone! We will keep you posted!
Oh sweetie, you are not alone. Like that Cold Play song I love. It goes “You are not alone, I am here with you…”
Anyway I will help in any way that I can. The biggest part is the mental. I could not discuss it for 3 months without crying.
You and your husband are young. You will do well. Make sure after the biopsy that he comes home and lays on the liver side. I placed a small pillow under mine to help with the pressure. Of course only do what your doctor says. I am not a doctor just a fellow patient and every doctor does it differently. I have been away for the past week and just realized you wrote this yesterday. I am so sorry I was on a train for 7 hours ouchie. How is your husband doing? He shouldn’t lift anything. Now that I have typed all this I know that it was yesterday, I hope it went well. I am interested to hear how he is doing. Please take care of yourself as well. It must be so hard for you being pregnant. You are important as well. My very best to you and your husband. Dee
No worries at all Dee we appreciate you getting back to us. His biopsy went well now we are just waiting for the results. He was in quite a bit of pain afterwards and was very sore in his shoulders. He is up and moving today he says it makes him feel better. Thank you for being here for us and letting us know we are not alone as we go through this. I definitely know what you mean when you said you cried for three months when speaking about it I am the same way every time some one asks. The not knowing has been so hard but I am nervous for next week when we get the results. So much emotions are happening right now but my husband is wonderful and said he has so much to fight for.
Hi there, yesterday I tried to reply on my cell phone, it didn’t work. I just wanted to say I hope that you both get good news.
He is young. The liver can regenerate once whatever is attacking it is stopped
I am praying for both of you
D
Hi Dee! I wanted to respond we are still waiting on the results from his biopsy. Sometimes ignorance is bliss but in this case we have to think of it as knowledge is power. I am so nervous to get the results back. I had asked a liver doctor online what he thought it might be and he said this sounds like signs of PBC and my heart just sank into my stomach. I keep praying and hoping for a better outcome but we will not know for sure until we receive the results. I appreciate all of your support and guidance through all of this it truly helps us. Thank you so much Dee!
Hi I don’t know how much research you have done yet about PBC and I have to say I did not know what it was so I looked it up. I found things that can help and would imagine this would help others as well. My thoughts and prayers are with you and hubby T.
How is PBC diagnosed?
Because many PBC patients have no symptoms, the disease is often discovered through abnormal results on routine liver blood tests. Doctors need to do several tests to confirm a diagnosis of primary biliary cirrhosis. One test looks for the presence of antimitochondrial antibodies (AMA) in the blood. This test is positive in nearly all PBC patients. Ultrasound exams and a liver biopsy, in which a small sample of liver tissue is removed with a needle, may also be performed.
How is PBC treated?
Patients most often take a daily dose of a drug called ursodiol. This is urseodeoxycholic acid, a naturally occurring bile acid. This drug improves the liver’s ability to function in PBC patients. It also extends life expectancy and may delay the need for a liver transplant. The recommended dose is 15 mg per kilogram of body weight, and the medication must be taken every day for life, or until a liver transplant. Patients rarely experience side effects from ursodiol. Other drugs are effective at relieving the symptoms of PBC, including the itching.
If I’ve been diagnosed with PBC, what questions should I ask my doctor about PBC?
“How severe is the liver damage?”
“What treatment do you recommend? Will this slow down the progression of the disease?”
“Will any medication be prescribed? What are the side effects?”
“Should I change my diet?”
“Are there any supplements you would suggest that I take?”
“What can be done to relieve my symptoms?”
“If cirrhosis develops, is transplantation my only option?”
What lifestyle changes may be helpful for PBC patients?
Maintaining a healthy lifestyle will help patients feel better and may relieve or prevent some of the secondary symptoms of PBC. Your doctor may recommend:
A reduced sodium diet
Drinking ample water
Taking calcium and Vitamin D supplements
Avoiding or reducing the consumption of alcohol
Reducing stress
Exercising, particularly walking
Skin Care
Regular dental examinations
Artificial tears for dry eyes
I also found a support group, if you are interested, please reply, I am not good at copying and pasting more than one thing at a time, sorry 🙂
Dee,
I log on and see your wonderful comments. You are a miracle honey. I love you and the way you love these readers. xoxo Karen
I just remembered the link I sent you is in the the cirrhosis forum for the MedHelp site and there are many caring knowledgeable people on there. I am praying that what ever it is is early enough that medication can help. I read that many people live a long time after diagnosis.
Also I don’t remember if I asked or not. If your husband seeing a liver specialist? Just checking as regular GP’s are not as knowledgeable, some are but many are not and you want the best.
If need be he could find a doctor at a hospital that does transplants. You get to know a doctor who will care for hubby, that way you are prepared in case he must be listed.
I try to think expect the best, be prepared for worst
Hello,
My name is allison and my dad has cirrhosis of the liver. He was diagnosed 4 years ago. The past year has been rough. He has been suffering with memory loss, confusion and hallucinations. Also in the past week and a half he has lost 6 teeth. Is that normal?
Hello, I am so sorry to hear about your Dad. Is he taking lactulose? It is a prescription which draws the ammonia out of the brain which is affecting his. Normally the liver cleans our toxins out of our body through urination but when it can’t work right then the ammonia stays in the brain and causes everything but the tooth loss.
The lactulose will draw to his bowels and out it goes. He could see a huge improvement if he were to take the lactulose. It is very inexpensive. There is also an antibiotic (expensive) that can do the same thing
Is your Dad seeing a hepatologist? That is a GI that specializes in the liver and is essential to the health of your Dad
I wish the best for you and your Father
Dee
Allison,
This all sounds very normal. Is he taking Lactulose or Xifaxin for Hepatic Encephalopathy? If not, call the doctor today. He has too much ammonia build up on his brain. Try and have several small meals a day. Reduce red meat protein and go for grains instead. I’ve written about that in my diet section. I had it too and it’s sooooo frustrating and he doesn’t know what he’s doing. I got very docile, some get very aggressive. Please know that it’s not him talking, it is the HE. His nutrition needs a boost. Will he drink a protein shake? That will pack a lot of vitamins and nutrients in a small serving. Maybe offer to mix it up like a malt with chocolate?
I know what you’re going through and I’m so very sorry. I do know that with medication, the HE can be improved.
xoxo Karen
Hi, I was diagnosed with hep c genotype 2b and f4 cirrhosis and fatty liver. No one ever explained . So it was devastating when I got this news in Oct 2015. Got thru tattoo 30 years ago.
Have just gotten past the 6 week mark on sovaldi and ribavirin. Feeling sick and lots of pain my liver and back. Lots of fuzzy memories. Brain fog. Can’t work I’m a trucker. My wife is getting me eating healthier. Trying to keep up hope, your blogs help , thanks.
Hello, welcome. I can only try to understand what you are feeling. When I was diagnosed back in late 2007. I thought it was a death sentence. I had a friend who had treated 3 times with the old treatment of interferon and ribavirin which failed for her. That was back in the 90’s. I was diagnosed with the HCV and cirrhosis within the same month. I am now cured and have been for 4 years. My liver is improving all the time. I do get checked every year for liver cancer and will do so for at least 8 years.
I am happy to hear you have gotten halfway through treatment. It is a hard treatment. Try to keep the faith, you are going to be cured. I could not work through treatment and my husband got me through it. I used the Incivek, Interferon and Ribavirin. It was an awful year of my life. I also had brain fog, it will go away. You will feel better. I am so glad your wife is getting you to eat healthier. Try to drink as much water as you are able to. That is very important. If you can cut out fried food, processed lunch meat that will help your liver. Also red meat is hard on the liver. Everything we eat and drink has to be processed by the liver. I try to think of that although Christmas has been hard, I have been eating too much sugar and I can feel it. Please keep in touch with Karen and I, we want to know how you are doing. Try to keep positive. If you can manage small walks every day that will help you as well. I have to admit I did not think I could do it. After finishing tx I did start walking and wished I had been doing it all along. Bless you my friend. Dee
Hi all,
My husband recently completed Harvoni treatment and is cleared of HepC! While we are thankful for clearing of the virus that has made him ill – I am dealing with the aftermath of how he won’t help himself.
I am not speaking of alcohol. He quit drinking 10 years ago when we found out about I am speaking of his emotional state – and how he seems to not want to help himself. He has always been on the heavy side, however now with reverse sleep patterns – he eats throughout the day and night – when I am sleeping
His last check up he was told that while his MELD score was extremely low; that if he did need a transplant – that his weight would prohibit him from having a transplant.
What a wake-up call to me – I am not bugging him – when I do try to make dietary adjustments – he will tell me that the food doesn’t taste good. He will make a midnight run to the store and pick up food that isn’t good for him.
He is ill – he nods off and sometimes has some brain fog and is on xifican, and many diuretics for ascicites – which limits many activities to lose weight.
I’m at wits end – he has to want it for himself – we’ve been married for 35+ years and I just heard that Natalie Cole died. I know that she had liver disease – and I’m fearful that I am going to lose my husband.
Does anyone that is going through this know how I can encourage my husband to want to lose weight and to do it for himself?
I have to say I find this website helpful and love the positive aspect of everyone. I have no one that is supportive of what we are going through.
Blessings to all.
K
Hello there! I can understand your fear and frustration. When I heard that Natalie Cole had died, it hit me in the gut. But then I remembered that in an article with People back in 2008 she said she had to quit the treatment. Sp, to me that means she still had HCV. It is very sad to hear she died. Your husband is still suffering from the side effects of the drugs used to kill the virus. Perhaps you could get him to go for a short walk every day? Even 10 minutes a day makes a difference. Or to a certain point and back. I had a similar problem after treating I did not want to do anything. I was so exhausted, had brain fog etc. I was told walking would help me but I didn’t do it until 3 months afterwards. It does help, it gets your blood moving, wakes you up. I realized I could feel like crap sitting on the couch or feel the same walking, so I started walking. Another important thing to do is to drink water. It helps to flush the medication and toxins out of your system and makes you feel better. Karen has some recipes on here, in the upper right hand corner there are some recipes in a drop down box. I wish you and your husband the best. Dee
Hi Karen, I would like to ask what’s the reason why my step sister’s belly button turns black and it looks like exploded she have cirrhosis. Her legs swell but now her belly button turns black. Very strange.
MARILYN
Hello Marilyn, thank you for visiting this site. I will have to try to find some information on this but off the top of my head I wonder if she is bleeding under the skin so it looks black. I will check it out and get back to you. You are a very good sister to try to find answers. I am so sorry to hear your sister is doing so badly. Hang in there. Dee
Hi this is Dee again, here is a site where you could take a look and also ask specific questions. Is your sister getting any treatment? I hope this helps you. Again, you are very sweet to try to help your sister. If you see her throwing up what looks like coffee grounds that is internal bleeding and you need to call 911 to get her help. Take Care
http://www.medhelp.org/posts/Cirrhosis-of-the-Liver/belly-button-bleeding/show/1916142
Good morning,
My head is spinning with reading everything. I am 36 years old and was diagnoses with Primary Biliary Cirrhosis in 2010. It had taken some time to even get diagnosed, because when you are late 20’s early 30’s and complaining of “itching” most of the doctors just didn’t check my liver. It took a few years for me to find a doctor that would consider anything other than dry skin/allergies. At the time I was finally diagnosed I was stage 2. As you (Karen) seem to be more aware of liver disease than most of my doctors, I’m sure you are educated about this branch of liver disease. It is autoimmune and hereditary. I see a gastroenterologist that I like, but I don’t feel really connected with him. I believe his knowledge base and skill set are great, he just is a very typical MD. He also has a Nurse Practitioner that does a better job of treating me like a human, but it is still a busy practice. When I first got diagnosed I was terrified, but he assured me that it was a very slow progressing disease, and while I would likely end up with a transplant someday, it was far in the future. I got pregnant shortly after starting my PBC meds, and my now-husband and I conferred with my physician on the safety of the pregnancy; which he assured me was perfectly safe. We had another child in short succession (12 months apart in age) and all seemed well. This past year was when we got married and it was a large and beautiful event, but it was stressful as well. By the time I finished the wedding and we returned from our honeymoon I was even more run down than normal. 10 days after the honeymoon ended I was in ICU with GI bleeding and pancytopenia. This was the first time we had encountered any indication that my PBC had progressed beyond stage 2, or that there was splenomegaly. Luckily I didn’t have any varicies and the bleeding was coming from esophageal ulcers (I also have barrett’s esophagus secondary to the PBC). I was however re-staged to stage 4 PBC which is ‘End-Stage’ and we have started doing the MELD scores. I am currently only a 6, so I am hoping it will slowly progress; but initially they said I had probably 20 years before I hit stage 4, and I only got 4 years.
My current diagnoses are:
Primary Biliary Cirrhosis
Barrett’s Esophagus (Super-GERD)
Splenomegaly
Pancytopenia
Iron Deficiency Anemia
I am an RN and I felt very strongly that I could help manage my diseases with diet. I am overweight, a lot of which occurred with the back to back pregnancies. Over the past year I have lost 45 pounds (I still have more to go). My doctor just keeps telling me to lose weight and “calories in, calories out”. But every time I get into a good exercise routine my iron drops, and if I limit my calories I seem to run into all sorts of deficiencies (low potassium, low calcium, you name it).
I scheduled a private pay appointment with a dietician to try to work through some of these issues, and while she was really nice, she was pretty much baffled at anything outside of diabetic nutrition teaching. She didn’t know much about any GI issues, and had no experience with liver patients.
In all of this time since 2010, not a single doctor has told me to try a low sodium diet. Not a single doctor has told me to lower my fat, other than the basic ‘you need to lose some weight’.
I literally started crying today when I found your blog. I am constantly in fear to the point that it paralyzes me. Like a lot of people, when I am afraid I seek out comfort in the form of too much sleep and really bad food choices, both of which just make the cycle that much worse. I have 5 children total (blended family) and a husband that I also cook for. I am trying desperately to find meals and a lifestyle that allow me to cook for my family AND save my liver. I am hoping that your blog and recipes will do just that. I am going to Kohl’s *today* to buy a juicer so I can make the CAB drink. I love beets (pickled, but I will cut those out due to the sodium). I love to cook. Love to. I get busy with work and kids and it is hard sometimes to put a meal on the table, so my big battles will be what to do if we go out to dinner or get take out; but having guidance of any kind is better than what i was getting before.
I have an appointment with the GI NP on 1/20 and I am going to share your blog with her, so she can pass on the recipes and information to other patients.
Thank you. My Liver (Greta as she is lovingly referred to around here) and I thank you.
Katie
Katie,
Your story touched me deeply this morning. So very many places to respond. Number 1 being that on New Years Day, a “best friend” with PBC was transplanted at Nazih Zuhdi in OKC. I hope to go see her this week. She’s doing great. I know that is not your dream life – having a transplant – but it is a good and safe option, as I have found out. You’re so young… and with a growing family all of these things seem harder for you.
First of all, congratulations for being proactive and not cursing the universe. Many people can hardly get past the victimization. You, on the other hand, are a go-go girl. I’ve written so much about diet, exercise and nutrition that anything here would be redundant. The liver loving diet worked for me.
My suggestions to protect your budget and your time would be to reduce sodium and fat as much as possible for the family. Then set aside portions for yourself that are cooked with less meat and sodium containing foods.
The juicer is great, but can contain empty calories. My best and safest bet is the RAW meal protein shakes. Lots of plant based protein and nutrients. No whey, which can be hard on your GI system. It’s 1/3 of my daily caloric and protein intake to this day.https://www.ihelpc.com/protein-shakes-for-a-healthy-liver/ is my blog on that.
You’re amazing. Simply amazing in your zeal to heal and move forward. Life is GOOD, even with liver disease. Your kiddos have such a great role model. Keep in touch. Your praise was so sweet and very validating. I needed that today while working on a nutrition ebook. Truly.
I’ll be hearing more from you. Let me know what you learn. Sending love your way.
xoxo Karen
Hi Katie, I am so very sorry to hear that you are going through all of this at such a young age. Karen is so right, I use a plant based protein as well. I try to mix it up like she does with veggies and fruit. Some days the drinks taste really good, others not so much 🙂 I do believe that diet can help you. Karen has a collections of recipes under “Liver Loving” up in the right hand corner of the page. She even has some fast food places. When she was first diagnosed she was afraid to eat anything so she ate a lot of oatmeal! It was more than that but you can read about it in her story about when she was first diagnosed. She did not even know she was sick with HCV, liver failure until she went for a long walk in 100 degree weather and the next day she was so swollen she could not get dressed. My Mom had a blockage in her heart. The surgeon wanted to operate. My Mom started on a diet recommended by Dr Dean Ornish. It is called the “Rice Diet” but it is not about rice but a new way of eating. She did that for 6 months, lost 25 lbs and the blockage in her heart. It is just a new way of thinking about what you can eat. You are young and sound vibrant, full of life with small children. I hope you can find some useful information. When I was diagnosed with cirrhosis, I stopped eating fried food, red meat, processed lunch meat and food. I do think the beets are good for your liver however try to find some without salt if possible. Try to drink a lot of water. It helps your liver work better.
I wish you the best. Take Care, Dee
Hi Katie, I thought I would give you the link to the “Liver Loving Recipes” Karen has written. Take care of yourself sweetie.
https://www.ihelpc.com/liver-loving-recipes/
Dear karen, i am feeling very desperate. My partner has been diagnosed with cirrosis, leptospirosis, toxoplasmose and now budd chiari disease all of which attack the liver. He has just been taken back into hospital because he has ascites, which has to be drained through the jugular vein and have a biopsy of the liver,but no-one explains much to us we are both very frightened and scared. Yes he was a heavy drinker for a long time,but he stopped when he became poorly. Can you tell me anything about buddchiari disease please and is it life threatening? I look forward to hearing from you karen if you have the time to respond. Many thanks sasha (france)
Plus my partner has hep c , in fact we feel that there is not much the drs can throw at us now! Its my partner who is poorly, but i am feeling a great pressure as well as i love him, but its out of my hands now and in the hands of the doctors. Sasha (france)
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Hi, I found a definition for Budd Chiari Syndrome. It is good that he has stopped drinking. The Hepatitis C will continue to harm his liver until he treats for it. Again, you will need a hepatologist (a GI who specializes in the liver) to decide what to take care of first and how. There is also a site you can go to to get additional help with each problem http://www.medhelp.org. You can go there look up the problem and in most cases can find a forum about this i.e. Hepatitis C, Cirrhosis.
I am so sorry you are and your partner are going through this, Dee
https://en.wikipedia.org/wiki/Budd%E2%80%93Chiari_syndrome
Hello, oh my gosh he does have several problems. I know of this site where everyone is very helpful. I will give you the link. Also you can search for Budd chiari and there is a definition of it. I hope that he is seeing a liver specialist. That is the most important doctor he needs, a hepatologist so that he/she can sort out the problems and decide what to do in what order. I am so sorry to hear of this. I am sure it is quite a shock.
http://www.medhelp.org/tags/show/1398/budd-chiari
Take Care
Dear Karen I have read most of these stories, and I am 36 and I was diagnosed September 2015 with cirrhosis of the liver stage 4 fatty liver infiltration, this was a diagnosis after gallbladder surgery, I always had my liver checked all my life since I was very young because they said my liver always got inflammed, I have drank through out my life with out a care in till this diagnosis, I am scared for my life, I have been sober for 4 months, all my labs are perfect and I feel fine, I just don’t know of any support groups, or anyone going through this, I have a teen who is suffering from a eating disorder to top this off, I have not been to a hematologist yet, I hope my liver will heal, I have trouble dieting but I stopped drinking, I stay active for the most part, what can I do in my situation, can I live long, I had no score also on the scoring table, they told me there are not set years to living because my labs are good, please help!!
Hello! Welcome. Good for you for quitting drinking. That is a huge step and you should be proud of yourself. It is good that your labs are perfect. Have they done a liver panel? You have a good chance of recovering if you don’t drink. Try to be kind to your liver. Everything we eat and drink has to be processed by the liver. I drink a lot of water, well actually except for coffee in the morning I drink water. I have cut out fried foods as well as red meat and processed lunch meats. I don’t salt my food. Every little thing you can do will help your liver.
Good luck
Dee
Debbie,
I am 46 and just diagnosed as well 4 months ago. I have done a lot of reading as I’m not getting very many good answers from the doctors at this point. Although I believe I’m well into stage two or even three of cirrhosis my body is functioning fine now that I’ve cut out alcohol and eating and drinking right. I’m very optimistic that I’m going to live this way for quite some time as honestly I feel better now than I have in a long time. I have lost 40 pounds eat like I was on a fitness show and live an immaculately clean life now… Had I known I had an underlying problem I would have stopped drinking long ago, but I did not know. I am still going to use the fibroscan readout showing my level of fibrosis to get on a waiting list for a transplant but in the meantime I plan on it living as normal as possible.
Statements like that outwardly and programming it all the time is the only thing I have to keep going honestly because I definitely do sink into depression many times but then I turn around and analyze just how I feel overall and so far so good.
Hi Karen,
I just found your blog today. I wish I had found it years ago. Thank you for doing this blog. I have read lots of blogs on about liver issues and I like yours best. It has a bit of everything, knowledge and information, actionable things we can do ourselves, support and of course your positive attitude.
I keep kicking around this idea in my head, of a care cooperative. There are lots of websites and few support groups, but I’m thinking more of a connection where patients could contact other patients in various stages and maybe we could support/help each other if we were close enough distance wise etc. There are lots of pitfalls, scam artists, dangerous people, etc. I don’t know how to even start determining if this is viable.
Have you ever thought about something like this? Or anyone else? Does anyone have an idea how we might start? Do you or anyone you know have a need for care pre/post transplant? For end of life there is of course hospice but there are not a lot of options for the in between stages. In my case, the hospital would not agree to a rehab center for post transplant.
I’m just kicking this around for input and thoughts. Suggestions, anything. Maybe it’s not a good idea, I am open to hearing that too.
Regardless, carpe diem, if the best you can do today is a cup of tea and watching the sky , love it for all it is! Best wishes and take are.
Linda
Linda,
Oh how I’ve thought about this. My dream would be group homes in every major city. A place where people can live together with support for cooking, eating, and exercising. Perhaps a leader who is early stage liver disease. I’ve thought about a screening process and a set of rules to be governed by to protect everyone.
If I had some money, it’s exactly what I would do. Let’s keep kicking that idea around. Pray for guidance and keep poking at how it could come to pass.
It’s good to know that someone is on the same page. I’ve even looked at some models of how it would be done. There IS a need for care pre and post transplant. You’re right. It’s the in between stages. xoxo Stay in touch. xo Karen
Karen you just so beautifully described exactly what I was dreaming of! Yes, let’s keep putting the word out, it only takes a little faith and some nudges of energy to bring things to existence. As I have time I may reach out to other groups. If you don’t mind I am going to quote some of your thoughts about governance etc. And of course I will circle back with you if I have any progress, even it’s just other like minded folks. I will direct them here to your site. Hugs and positive vibes to you! Thanks!
I have been thinking about this. You are so right, perhaps if people discuss the need to help each other it will come to fruition. I know when I was younger I used to help the people who were sick in my community. It was very rewarding. Now that I am older and can’t help, I often wish for some help for myself. I wish there was a database of volunteers. There could be a type of credit system. I have seen Moms of children do this. They recive credit for baby sitting. Perhaps there could be something like this for people who need transplants but also need someone to help them. Then those people, as they improved, could pay it back by helping others who needed it. I fear this is just a pipe dream of mine. Perhaps it will happen one day. My best to you, Dee
Thanks for the great ideas and contributions. Once we start the conversation, I think it’s only a matter of time. If you are interested, we have a thread going over on https://www.inspire.com/ regarding both the caretaker issue as well as some other changes that we may need in the transplant community. Hop over and have a look, you can find me under Adnil01. Thanks! Linda
Hi there, I’m going to try this again. I did a search for cooperative care givers or cooperative health. The first few places were fee for service. Then I found a place in Virginia which operates much like I mentioned before where people come together to take care of each other. For every hour given they earn an hour. I tried to send it here. It wouldn’t work. I went over to Inspire and will go there now.
Hello, that’s is wonderful news! i will head over to inspire and see if I can find your post. I am very interested in what the model is…thank you so much!
Hi Linda, I tried to respond to you yesterday, there seems to be a problem with the site here. I did answer you also at Inspire. I hope that helped a bit. I know that I am heading where you are at some point though I may be too old by then 🙂 Take care of yourself my friend, Dee
Dee Ernst recently posted…Balancing Hepatitis and Health
Oh Dee, I’m so happy! I just accepted your friend request on Inspire and I can’t wait to talk with you more. And my dear, with age comes wisdom which is invaluable!
Hugs!
My mother was diagnosed with non alcoholic cirrohis as well as ascites, portal hypertention and GERD. She is having a hard time eating. Every time she eats a pain instantly surfaces and she just lays there and cry because it hurts so bad. She is to the point where she is afraid to eat. I don’t know what to do 🙁
Hi I am so sorry to hear of your Mom’s problems. What does the doctor say? She will get dehydrated if she isn’t keeping hydrated and may need the help of a physician.
Can she try some nutritional drinks? Even ensure with a little ice cream might work. Every morning I drink a protein drink. Not the perfect drink but I need the protein so I do the best I can. I drink a lot of water as well. This is a link to Karen’s liver loving recipes. I hope this can help your Mom.
https://www.ihelpc.com/liver-loving-recipes/
Hiya am writing to ask if someone ,help me understand a few things as am really struggling watching someone I love become I’ll. My bf has been told he has hepc and cirrohis of the liver, he doesn’t know what’s going g on, the doctors haven’t been very helpful, and I can see how scared he is in his eyes its so sad. I would like it if someone could behonest and give me a general life span of someone with cirrohis plz, and any suggestions how to help him, in a better way ,as am there for him but its horrible coz I wish I could do more. Thank you, and my prays go out to everyone you is suffering from this and there family’s .plz help
Hi there! I can completely understand the feelings. I was diagnosed with HCV and cirrhosis in the same month in 2008. I thought it was a death sentence, it isn’t. The best thing he can do is find a liver specialist. They are normally found in a GI office though all GI’s are not liver specialists or hepatologists.
If he drinks alcohol he should stop, drinking with HCV is like pouring gas on a fire. Also he should try to increase his water and try to remember that everything he eats or drinks has to be processed by the liver. On the home page here there is a list of liver loving foods. He should limit salt, omit processed foods when possible. Eliminate red meat as it is hard on the liver. Try to eat whole foods, veggies, fruits. Get his protein from plant based foods. If you need help, please don’t hesitate to ask. We are here are for you, take care, Dee
I forgot to mention, he will want to see the hepatologist to help him get treated for the HCV. There are new treatments that are much easier than they used to be.
Thanks for the reply dee. I noticed that you said you also had both of them since 2008 , has it been hard to deal with mentally, that’s what’s hurting him most. Thanks for this brilliant site, after reading things on here he thinks he is at the early stages of cirrohis as his symptoms are tender side blochy palms tiredness, and sleep patern not good. If this is so would he still have Yeats to live he’s 36 now. Also will his liver improve abit if he gets rid of the hepc?. He found out he had both about 12 mths ago , and he’s not touched a drug in 10 mths ,the first 2 when he found he went mad. Now he’s trying to help him self but really scared, but knowing that you other people have had it a long time and still alive, that gives him some hope ad he thought he has a couple of years to live. But once again thank you and good luck to you and everyone who is going threw some of lifes challenges .
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Hi there, yes at first I felt like I could not breathe. Now I know that I have gotten so much better since being cured 4 years ago. I had spots all over my legs from petichial hemoraging, the doctor said that the brown spots left behind would never go away. Once the Hep C was no longer attacking my liver the brown and purple spots are gone. It was a miracle to me.
Being tired is probably one of the first signs. People with more advanced cirrhosis will have swelling of ankles, then legs, belly. They bruise and bleed easily due to their platelets being low. Do you know what his platelet level is? That is a good indicator of health. Is his liver or spleen swollen? Is urine dark? We are about to get a bad storm, more soon 🙂 Take Care, Dee
Thanks again he’s got the hepc doctor on the 5 July and he had an ultra sound done the other day so he will get the results when he sees the doctors ,and I will get him to ask all these things then hopefully he will av a better picture were he is . you and everyone else take care xc
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Hi there, please keep in touch, let us know how things go. If you both can go to the doctor that would be great. It is also helpful to write your questions down. 4 ears are better than two 🙂 I always tried to take my husband with me to my visits. He would pick up on things I missed. I hope you have a good caring doctor who will explain everything. You take care of yourself too. Being a caregiver is not easy. I am praying for you both, HUGS Dee
Hello, I just want to say your blog is really helpful Karen! We found out months ago that my mom has liver cirrhosis due to Chronic Hepatitis C. Unfortunately for us, we are not sure yet how bad it is though my mom is already at a point where she found blood on her stool. She already underwent several laboratory tests and up to now we are still struggling to come up with the money for a few more tests. The tests are quite expensive and living in a third world country (Philippines) doesn’t help. We are not even sure where we will get the money for her medicines. It sucks. It sucks to see a love one sick yet you can’t do anything about it. It sucks even more when we realized that I and my siblings may also be infected. Anyway, we are still fighting. We are not giving up no matter how difficult it maybe. It
Hello! I am sorry to hear that your Mom is sick. Most children of parents wit HCV don’t have it. It is very rare to pass it on to a child. Both Karen and I have children and by the grace of God none of them are infected.
I’m sorry to hear that money is so tight. While trying to get money together there are things she can do on her own.
Everything we eat or drink has to be processed by the liver. She will want to cut out red meat, processed foods, limit salt. Try to drink a lot of water. I have mainly had water now since I was diagnosed. I was cured over 4 years ago and my liver is improving. You can try contacting the manufacturers of the treatments for HCV. They are helping people who don’t have the money. In fact they have even helped people find doctors. I myself was able to get help with copays. I pray you and your Mom will be able to find the help you need. Please keep in touch, Dee
Hi last August I was rushed to hospital completely yellow fluid horrendous bleeding heavily etc scans showed no blood at all going through my liver. I was told I wouldn’t make it through the nite, after a long 10 week battle in hosp I got through. I am a month off a year sober and would never go back to drink however I’m still confused as to wat to expect. I’m on furosemide, spironlactone,, omeprazole thiamine, lactalouse. Recent scan shows liver and spleen still very enlarged, I have gall stones; I’m extremely short minded but my blood tests are now more or less perfect??? I’m awaiting a fibroscan to see the extent as anyone been in this situation where scans show one thing and bloods another?? I don’t know what to expect any feed back would be grateful Thankyou xxx
Hello! Welcome! I am sure your experience had to be terrifying! Karen had a similar experience. She did not know she was sick when she started to swell from fluid her liver could not deal with. All at the same time she found out she HCV, then cirrhosis.
It sounds to me like you are doing well. If you continue to abstain from alcohol and eat right, drink water you could live a long time. The doctor says if you can stop what ever is attacking your liver, it can regenerate, in some cases.
I am very happy you survived. Please let us know how your fiber scan goes. I have heard of them, just haven’t had one. I’ll ask about it. Karen has a really good spot for Liver Loving Recipes. It is in the right hand corner of the main page. Blessings to you. Dee
I need more on your sites. I’ve had stage 4 for the last 10 years. Still work, but I feel in the last year it’s started to take its tole.
Hi I am so sorry to hear! It must be frightening. How is your diet? Have you cut out red meat? You should limit fried, processed foods and salt. Try to eat more veggies and fruits. Water is essential to help your liver work better. Karen has a place for liver loving recipes. It is on her main page along with many other helpful hints. I am providing the link to help with food. She has many other articles that are very uplifting to read. Take Care, Dee
https://www.ihelpc.com/liver-loving-recipes/
All I can say is thanks Karen. I’ve looked for years for information like you are sharing here. Most searches have resulted in some kind of video that leaves you hanging and then you can get the info if you buy the book or supplement. I too had elevated liver enzymes, in the 90s. No one really said much about it though. Then in about 2008, I found myself in terrible pain and went to the ER where they tried to treat me for a heart attack which was not the problem. So they found a gallstone and removed my gallbladder. My surgeon came to my room after the surgery and showed me a picture. It showed yellow fat on my liver. He said that I had fatty liver disease. He told me to eat a low fat diet and that if I did it would be ok. I had the pain(under right ribcage) once in a while and wondered why, since I had no gallbladder. Then looking into it I figured out my liver was causing the pain. A shallow look on the internet gave me a few ideas…..milk thistle sounded like the answer so I took it for a while. I was pain free and thought it was all over. then occasionally I’d get a few periods of pain(no doubt when I ate fatty foods or drank any alcohol.) Well diabetes and heart disease(5 by passes) set in too. Now out of nowhere, the liver pain is back. And here I am looking for answers again. Finally I may have found a true source of information, thanks to you!!Keep up the good work!!!
You sure know how to make a person feel good. Thank you so much for the sincere compliments. YOU are why I keep writing. It’s insane how liver disease can sneak in so silently. That emergency room diagnosis is the pits. You’re one of the lucky, and smart ones who figured out that you needed to listen to your body.
I hope that you find some of this information useful. I certainly don’t have all the answers, but it just so happens that those of us with liver disease have a common thread. Most of all, I truly hope that you gained a new perspective and are armed with information to move forward toward a healthy future. Being able to dialogue this with your medical providers can give you an edge also.
I hope you’ll be a lifelong friend and keep me posted on your healing journey. We’re in this together.
xo Love,
Karen
Hi Karen,
I would love to exchange e-mail communications with you regarding my diabetic father who was diagnosed with Liver Cirrhosis last year but the doctor haven’t mentioned what stage it is. For this year, he has was hospitalized twice, it was April wherein he was diagnosed with liver cirrhosis w/c is alcoholic related, hep b, ascites, tuberculosis. And last 1st week of July before his birthday, he was hospitalized due to numbness of his right leg, then we found out he had a stroke. His doctor always tells us that there is only little portion of his liver that is functioning well, that is why we have to maintain it by giving him essentiale. Aside from that, he had another 8 meds for his TB, ascitis, diabetes, heart, hypertension and some sort of a fibrous for his blood. I so loved my father, of which I don’t know what to do. Just a thought of him makes me cry =( Looking forward of your e-mail.
Sweet you, I can hear how much you love your father. I’m so sorry that he is not doing well. I want to encourage you that he may live a long time with these medications. Each of the drugs takes a different symptom and makes it easier for your dad. Sometimes, when we are at the end with someone we love, we can say things to encourage them. Take time to remind them of all the happy times you shared. Laugh and sing his favorite songs. I did this with my father when I was 23. He was in a coma from cirrhosis.
He slowly got better and lived for almost 20 more years! I was so happy that we had time. I cannot promise the same for your dad. My dad was young and had some things in his favor.
No matter what, love is always healing and you can give him all of your love right now. I know that you do and am sending my love to encourage you.
xoxo Karen
I need your recipes. Don’t know what to eat to help
Click on the recipe bar at the top. I’m getting them together so that they will be easier to view. I hope this helps honey. xo
Hi KAren,
I came across your blog on the Internet. I am a 44 year old white male in South Africa. I have been Diagnosed with Cirrhosis Stage 4 after a liver Biopsy and Laproscope. I was in ICU last week week with Liver Failure. Having difficulty staying awake during the day and not being able to sleep at night. Chronic constipation etc. Seeing the doctor and dietrician again tomorrow. I am on a very strict diet. I just need some support and caring from someone who understands.
Kind regards.
Selwyn Eggel
Selwyn,
So many of us know where you are living right now. This is such a shocking time in your life. You’re really young. With some modifications in your diet, you will begin to see changes. It takes time to slowly understand each symptom of liver disease. Each of them has a solution, whether it is medical or personal lifestyle changes.
I want you to feel like there is some hope. Stay with the program from your doctor and you’ll be around for many years to come!
xo Karen
Hi my name is Cindy I’m 46 years old middle aged woman mother of three grown boys and I’m also in the end stage of cirrhosis of the liver I’m suffering from ascites at the moment and I’m also trying to find out as much as I can about but we are going to do I live in Texas but I have been wanting a change I feel like I’m in prison and my home because I have no friends and no social life due to the fact that my looks have changed drastically and I feel very self-conscious about the way my stomach looks now with the swelling in the water retention please feel free to contact me. I did leave my email address thank you you have a good day
Good morning Cindy,
I hope that your doctor is offering you some medicine to help relieve your symptoms, like diuretics for ascites.
Nutritional changes – like a low sodium diet and increased plant proteins can help a LOT. I got rid of my ascites and was actually able to wean down on the diuretics but it took close to a year.
As for the personal life, it’s truly like being in a prison. Well put. I hope that you will be able to find a new group through a community program, or through your church. Others’ who have liver disease can be a support. Maybe an upbeat type of group is best.
I found a meditation group to be very accepting. We meet and spend time learning to take long deep breaths to help us deal with the ups and downs of life. Please let me know how it goes.
My sister passed this week and I probably won’t have time for an email. Please feel my love and Take Care of YOU! I’m so glad you reached out and are seeking support. It helps.
xo Karen
Hi Karen,
Thank you so much for your reply. I revisted the doctor yesterday and then dietician. My MELD score is 10. The doctor Is referring me for transplant. He wants do it it as soon as possible as my body is still able to handle it before the condition gets worse. He also said the condition came on very quickly and could deteriorate very quickly. He says it’s high unpredictable and one day you are fine and the next day you are sick again.
Will keep you updated. Thank you so much for the support. Lots of love. Selwyn
I’m so glad you are with a proactive health group who is getting you some dietary advice. That’s super! Getting listed early is a good thing. I pray that your strength holds out and that you will have good support in your journey.
Keep me posted. I read the posts and try to answer every time!
xo Karen
Hiya I wrote to you a while ago and thanks for your reply. I wrote about my bf who found out he had her c and cirrhosis. When I wrote last time I didn’t know much but his condition. I know he’s about stage 2 damage and they said that child’s plugs score he was a 15 to 24*years life experience tense. I he’s starting hepc treatment of in 6 weeks, so will let you no how that goes and it’s the new tablets. I we live I have glasgow Scotland and united kingdom. I and to heat dome people who can’t get the treatment of they need coz of money and stuff is so sad, and my prays and heart goes out to everyone who is struggling. My bf hasn’t been the same person since finding out about his liver and hep but each day gets a bit better so to everyone good luck xx
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What a great friend you are. And thanks for the update. I DO remember your story. I’ve been hearing so much about people who get treated in the early stages of cirrhosis. Their liver actually heals and they are do SO much better.
I think you’ll be happy to have your old bf back after treatment is over. I am glad that you’re helping him through treatment. He’s a lucky guy to have you. I can’t wait to hear how he does after treatment!
xo Karen:)
Hey my names jessica, I am a mother of two children ages 10 and almost 12. I was diagnosed with mild fatty liver disease three years ago. After doing exactly what my Dr said my liver has gotten worse even though my enzyme levels are within normal limits. I now one month shy of three years have cirrhosis in stage 2-3. I’m scared and need advice. Plz anyone.
Oh…I’m so sorry, you must be worried. It can be turned around, I have seen it happen to other people with cirrhosis.
Did your doctor tell you that everything that you eat or drink has to be filtered by the liver? I cut out red meat, fried foods, processed foods, limit fats as much as I can to help my liver work better. I drink a lot of water. I try to eat as healthy as I can.
Karen has a page called Liver Loving Recipes which are helpful though you can also look for liver healthy or heart healthy diets. You can turn this around. Small changes could make a big difference. My friend has fatty liver disease and has been told she can have on drink of alcohol a year. I don’t drink, my liver is worse at a 3-4 but it is improving. When Karen was diagnosed with cirrhosis, she was so afraid to eat anything she ate a lot of Oatmeal which is a good thing thought fruits and veggies are good as well. I will get the address, take care, Dee
https://www.ihelpc.com/liver-loving-recipes/
Hiya sorry to bother you but am really stressed out, but and my bf doesn’t look like he can take much more. The hospital just phoned saying of E of his blood test shows high they said he has to go for a mri scan. I does this mean he has cancer? If so can liver cancer be cured? I m so scared for him now, could anyone please offer any advise thank you x
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Hi! I’m so glad he’s in the hospital where they can get him some help. If they’re running an MRI, then they will find out if he does have cancer. I had liver cancer and survived. Keep reading on the site and go to the “start here” button to look up articles. You are going to be a great support for him during this time. Take care of yourself and make notes when the medical staff comes in to talk.
Much love and hugs,
Karen
Hi thanks for your reply, I but think you picked me up wrong on Tuesday he had his app with the Dr they took blood. Then on Wed afternoon they phoned to say one of the blood tests shows really high reading, and so they want him to go for mri scan they said he will get an app for one in the next six weeks. They said one of the things the Dr will be looking for is cancer. I my question was by the blood they took do they already know if he has cancer or not? I. Sorry to be a pain it’s just like our life is like a roller coaster at the moment, and he’s terrified I really feel for people who are suffering and the families. I shelly xx
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Ok I understand now. Thanks for clarifying. So the MRI is that far out? Mine took about that long too after my blood labs went up. Is it his AFP marker that went up? That is the blood test that shows elevation for tumors.
Now – I’ve had 2 readers who recently have high AFP markers and NO cancer was found. Liver damage can create a high AFP also. That is why they do the MRI to see for sure. and it IS an emotional roller coaster for everyone. I just posted a blog about how my brother and sisters took the news. It’s a mess for everyone. Emotionally exhausting. I feel for all of you too and send you my best encouragement and love. Please keep me posted.
xoxo Karen
Hi there, it could have been the AFP blood test which indicates, at times, if we have cancer of the liver. Or it could have been his AST or ALT. If his platelets are low that it another indicator of cirrhosis. I’m sorry they did not tell you which of his tests were out of line. Perhaps you could ask for a copy so you would know more. 6 weeks seems like a long time, I would try to get the doctor to get him in there sooner. Especially if they suspect cancer. I know this must be hard for both of you. Try to do as much research as you can. Take Care, Dee
Thanks for your reply, he went to see the specialist on the Tuesday and he said everything seemed okay as there trying to get him stationed on hepc treatment of in the month or so. Well after the meeting the nurse took his blood, and then the next day in the afternoon a nurse phones and says on E of my blood tests was the highest it’s been, so he asked what it meant and she says he needed to go for an mri scan, so he’s also to look for what and she said possible tumors or to see how much the liver was damaged. She said there the two things the Dr wants to look at. Then she said I must go to thay appointment it should be within the nxt six weeks. So he’s been left not knowing if he’s going to have cancer, this is a horrible time for anybody who’s dealing with this and there family’s, and my heart goes out to them serious. My bf is only 36 and his daughter is 6 tomorrow, and no he’s wondering how may birthdays he will get to see her have so sad, and I feel so helpless as wen I look in his eyes he just looks lost. Do you mind if I ask you a few questions please.
If he had an ultrasound the 2 months ago if the found cancer now, would it still be treat able?
I have been looking on the internet and is it true if you get liver cancer you would be lucky to live 5years?
Is there anything you can reckon mend for him being so anxious?
Is there a anything you think I should be asking the Dr?
ALSO he has cirrohsis&oq but they said it’s at stage 2 damage
Many thanks and I hope you and everyone who is battling with this all our love shellyxx
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Hi are you saying that he had an ultrasound 2 months ago? Was everything ok then? Did he have blood work then? The good thing about keeping a close eye on the liver is that it can be caught so much quicker than a person who was not being checked out. When I was diagnosed with HCV and cirrhosis, I thought it was a death sentence, it wasn’t. That was in 2007. I am still here. First he needs to breath, then he needs to learn all he can so he can help himself. I am confused, damage of liver is stage 2? That would not be cirrhosis though they could have meant his level of inflammation from the HCV is 2 and he has cirrhosis which is a 4. That is what I was was, a grade 2 stage 4.
For anxiety there are a variety of medications. Some take Ativan. I had anxiety attacks so was placed on Xanax, the lowest dose possible .25 as needed. It is possible they are being very cautious and getting the MRI just to be on the safe side. Hope for the best, prepare for the worst. I have to say, he is very young and he has that on his side. Sorry I just happened on here and saw your message. Please don’t panic. I do understand the fear however try to think that you have caught it very early. I’m so sorry you can’t get better answers from them. Can you get a copy of his blood work? I think that would help you quite a bit. You could look at the AFP, perhaps it is very elevated? Or his platelets have dropped, there are other numbers, I’ll check back in tomorrow, Take Care
Oh call first thing Monday to get the MRI, you can normally get an MRI right away. Also…in order to get him approved for the HCV medications the doctor has to prove that he needs it right away so they may be doing the MRI for this reason. Hang in there, Dee
Thanks again, I for your help it’s just so confusing. Yes his ultrasound showed no tumors and his bloods were okay 2 months ago. That’s why this is more of a shock, he has cirrhosis and hepc they said the other day his liver damage is in the middle. He’s to wait for mri scan appointment, but but he’s to see specialist on the 12 of October. I will write things down this time so we no what’s happening, as when the nurse told him on the phone he was in shock when she mentioned looking for cancer, really thanks for your reply they really do help, we have just been reading on the internet and and what thay describes isn’t nice. I I really hope you and your friend Karen continue to do well love shelly an bf xx
Shelly recently posted…Take it Easy: Advice From My Sister
Hi there, if he had mid range damage he doesn’t have cirrhosis. This could just be a CYA, double check.
I mean that if he is a stage 2 that is mid level damager, 4 is cirrhosis. I have cirrhosis. While it is possible things have changed in 2 months. I can’t believe it would be that bad. Of course I am not a doctor, just a friend trying to help other friends.
Try to get copies of the blood work, they are his records and he has a right to see them.
When they do ultrasounds every 6 months and blod work, they are looking for cancer for me. The AFP is the one you want to take a look at.
I think it was kind of rude the way the nurse mentioned it. She proably doesn’t have a lot of knowledge so please take what she said with a grain of salt. How are your husbands platelets? Does he bruise easily? Bleed? Just checking, trying to help. I know what it feels like to be told you have HCV and cirrhosis within 2 weeks of each other. That was 2007 and I thought it was a death sentence. Please hang in there. Karen did not know she had HCV until she started to retain fluid at an unblievable level, within hours of a walk and was hospitalized found out she had a failing liver.
Look at the stages of liver damage, they are 1 through 4. Then when you get to 4 there are other levels. Sorry if I am rambling, I am trying to type as fast as I can, never a good thng HAHA Take Care of yourself.
Hi here is Karen’s story, I hope it will help you. She had HCV, cancer of the liver, a transplant and is still with us
https://www.ihelpc.com/about-2/my-story-of-hepatitis-c/
Hiya Cindy, I read your little storey and I only no what it’s like through what my bf is going through. Karen’s and deep advise is brilliant better than what the doctors have told us serious. Try and stay positive and am sure your boys will give you a that I strength to carry on, don’t worry what people think just concentrate on the those you care for take care shelly xx
Shelly recently posted…Take it Easy: Advice From My Sister
Hi dee, I have just had a call from the hospital and his mri scan is Saturday at 1.30 so keep your fingers crossed, and say a prayer for please. At least once he’s has the mri scan they will know exactly what’s going on. If it’s okay he can get ready for hep c treatment thank you
X
Shelly recently posted…Take it Easy: Advice From My Sister
Hay Shelly,
This is Karen getting caught up. Dee is a love, isn’t she? I’m watching to see what happened with the MRI. It can take time, but they’re really looking for tumors. Did you post his AFP marker? It’s a lab value that can indicate cancer that Dee asked about.
You’re awesome to be reading and getting information for him. That will help you to listen better to the doctors, and also may help you both to relax.
I know that sounds crazy… but take a deep breath. Take time to look at each other every day and enjoy the moment. Getting the diagnosis is so shocking and I hope you get some good news FAST!
xo Karen
I am a first time reader / visitor of this site and felt really great after going through some of the comments.
I need you help as my father has got liver cirrhosis and was identified in January 2016 when he vomited blood. Since then we are regularly going through Endoscope and banding of varcies.
Recently a week back he got the fever and we consulted the gastro where he told that its a viral fever. But as soon as the viral fever got over he is having swelling in his both feet.
Just need your help to find out that which stage he is in and what is the cure. Helpful if i can get the direct contact of you where can have more and faster information.
Karen,
Your site has been a blessing of information.
I feel so lost. My husband is just 49 years old and was just told he had stage 4 Cirosis.
His mother passed away about 2 years ago from a “Fatty Liver,” we have also found out that 2 of his sisters have liver failure.
My husband has always been a hard worker, so STRONG, protective, giving, caring…. He is Currently a DOC Officer and is on his FEET ALOT… He was a boxing coach, worked with so many youth, gangs, foster care for about 20 years, has always loved giving back to the community and loved kids. But when his dad died of kidney failure last year, and then with his mother passing 2 years ago, he was not the same.
He did gain a lot of weight over the last 10 years and started having severe adeama in his leg and feet for about 9 years, He refused to go to the doctor UNTIL July of this year. His leg got so swollen, I took him to ER and here now 2 months later diagnoses with STAGE 4 CIROSIS. ???? It has been such a BOMBSHELL for him, me, and our family.
Just 3 months ago we were working on him getting the Sleeve Biatric Surgery to help him loose weight and he was also needing BILATERAL KNEE SURGERY. His knees are bone on bone right now.
BUT, sadly, now in addition to being told he is stage 4, he was also told he could not have the weight loss surgery or knee surgery, or ANY surgery due to the cirrhosis.
He was also told he was a stage 4, BUT NOT bad enough for a liver transplant.
I am so scarred with the adema he builds in his legs and feet, and all they can do is give him the diruetics and monitor that so it does not effect his kidneys. I am so confused because I do not want his kidneys to get bad while trying to cure the adeama.
I don’t understand why he has to wait until he is practically “dying” to get a liver transplant, when he is only 49 years old and has so much life still that he would be so much better off getting the transplant NOW before he gets worse or his kidneys get bad…I fear that something else will get worse that will cause him to not be able to have the liver transplant when and if the time came.
I am just wondering what I can do?
THANK YOU
I think you’re doing the best thing you can. You’re getting information, finding support networks, and keeping a good mindset. Your emotions may go up and down. You’re going through an incredible shock right now.
It sounds like he is about the same stage I was. My MELD was 16 or so at first. The medicine and lowest sodium diet helped a lot. He may not be able to do any weight bearing exercise. He can try calisthenics by doing leg lifts while he is seated.
One way to get your heart rate up to burn more calories is to exercise with small hand held weights. I used canned veggies! It sounds like with his history of coaching, he knows what to do. He may have confusion due to hepatic encephalopathy. Work on getting him to reduce red meat and eat more plant based protein.
I’m not going to kid you. It’s going to be a lot of work. You can encourage him and provide support, but please take care of yourself also. Keep in touch. I am going to add some more recipes to the site soon.
xo Karen
Don
I have it 2 just wanted you to know I’m here if you need someone to relate too.
I would like to just ask you or ANYONE… does he really HAVE TO WAIT for a liver transplant until hes BAD.. there is no way he would be able to have a liver transplant sooner ??? I don’t understand that.
He is so young, a stage 4, so why not do something while he is good enough to recover and then have a better, longer life span ?? Is this possible ?
The whole thing revolves around the MELD score. Lab results and everything have to add up and get you to the top of the list. There are not enough donors for one thing. Another thing is that you have to get sicker to get higher numbers.
The alternative is that anyone with money, status, or an “in” could get a liver transplant. With the MELD score, it makes it fair (if you can call it that) based on how sick you are and how close to death.
Thanks for bringing up the topic. Wishing you the very best. I’m writing about MELD score now.
xo Karen
Hi, I was finally diagnosed 2 yrs ago with biliary duct disease.. After years of confusion and test and doctors.. By then it had caused stage 1 cirrhosis . I started making changes and before being diagnosed . I made a big change in diet lost 100 lbs.. Never was a big drinker and don’t have any of the different types of hepatitis .. I have been taking ursodiol… After much reading I have concerns about this medication.. And I am starting to feel more changes in diet and more magnesium would be a better option.. There is so much information that it’s overwhelming.. I know I need to ask if my ducts are clogged or scared or simply aren’t working as I’m trying to find my way off this med if it could be controlled a different way.. Oh I forgot Taurnie which is ox bile too.. I will need that.. But I’m scared if I try this route it will do more damage to my liver.. My question is do any of you have info on the ursodiol.. And how do you guys feel about it? And thank you Karen for all the kind words I’ve read and diet help… Much love…
I read your comment and am researching,, because guess who is on Ursadial? Me too! I’m a little nervous about even getting off because my transplant team said it was a part of my life now. I’ll tell you more in an upcoming blog. Thank YOU for starting a new, and much needed topic.
Much love back at you,
Karen
Where can i find your diet have googled many websites
Well dear, it’s time for me to get them on there. I worked on a book to help readers plan, shop, cook, and store good foods. The few people who read it say it’s time to put it on! Thanks for the little nudge.
I’m on it,
xo Karen
Hi there! I will give you the link to help. Karen has so many wonderful articles that it is difficult to find things sometimes
https://www.ihelpc.com/liver-loving-recipes/
Karen, I have a question for you, my husband has just been diagnosed with fattly liver, cirosis, stage 4… he is strong overall, very healthy, would not of even know he had this until his adeama in his leg got worse.. because he has avoided doctors for so long he let his leg adeam go and now has stage 4 lymphadeama in his lowers legs as well…. his knees are bone on bone and he was going to have surgery and NOW he cannot. I
I worry about his knees giving out, he works on his legs all day.
It has been all a world win… what are your thoughts on waiting till end stage for a liver transplant or trying a living donor ???
I’m just wading through a lot and sorry to have let this go without answering. Now, this sounds really serious. Like his doctor should be making some moves toward getting him off of his feet. He’s got to get some rest, healthy plant based protein, and get his body restored. Once he is in better health, then reevaluate what to do about the job. Consider FMLA or anything to get him some rest and nutrition. I hope by now, a medical provider has give you some advice for this. Talk to nurses, ask for a social worker or advocate at a nearby hospital. You need support right now.
I’m so very sorry you’re having to face this diagnosis. It’s been 2 weeks. I hope you log back on and find this message. Please know that there is hope. Always hope..
xo Karen
Dear Karen
I been all night long reading and learning about this disease I have cirrhosis stage four and I find it out 2 1/2 years ago. For the last 3 days a pain and the right side of my stomach and I was very upset because I just done with all my test a week ago MRI, blood test, but is not much help there. I’m very happy to find you guys and feel the support and understand more. I can wait for get you books to follow the right way to eat.
Thank you so much
Hilda
Hello there! Welcome. There are some ideas for your diet here
https://www.ihelpc.com/liver-loving-recipes/
I hope this will help you until Karen can get her ebook out, take care, Dee
Hilda
Dee is right. Stick with plant based protein like beans. Eat eggs, fish, oatmeal, toast. Get salads a lot. Try a protein shake too! Stay in tough here. xoxox Yes, we understand. xo Karen
Am a zimbabean lady am 23,am very poor and am suffering from headaches since the age of 15 years..my dad left me long bek and my mother very old .i have not even afforded to get to the scan since then now the problem has developed so i wish any1 to assist anyhow.
Hello sweet lady. You are so young to be having these problems. Do you think the scan will show liver disease? Will they give you some help in the city? Will you eat some good soup and vegetables? Try to eat every day and drink clean water.
I am sending big love and prayers for you. Our prayers are all together creating a place where you can feel cared for. It is lonely with this disease. I wish you could get everything you need now. Please talk to me again.
Love and hugs,
Karen
Ultrasound yesterday: “Your liver is very cirrhotic Frank. If you don’t stop drinking it will kill you.” Out of 3, you are in the late stages of 2.”
I’ve tried to deal with this drink problem for 20 years but it gets to feel like I am trying to hold my breath under water.
The drink is not a good thing. I need to write my dad’s story. He finally quit after he had a hepatic coma and varices bleed. It was tough, but he had a wonder 15 or so year with us kids. He got to help raise his grandkids. I miss him so much, and am glad we had those years to heal. It takes a lot of courage to quit drinking. I hope your family and friends will encourage you and stand by you. It won’t be easy. But it’s possible.
xo Karen
My daughter was diagnosed with Cirrhosis in May, she is 32 with 2 children. She has been symptomatic for years. Swelling from her knees to her feet (with purple tint) for 8 years. She has lost 50% of her hair in the past 2 years. Her teeth rotten and had to be replace with upper and lower dentures. She is being referred to have her gall bladder removed, she is currently having to be treated with hormone supplements. She is tired almost daily. She is seeing a doctor that I have issues with. First she does not understand what stage she is in. She tells me he told her she has had this for approximately 10 years, developed from fatty liver disease in her early 20’s, yet she believes that she is in stage 1 nearing stage 2. She said he did speak of end stage liver disease. I’m afraid she is confused and is at End Stage liver disease and there may be a few phases of that. She is being referred to the hospital that does transplants but she thinks only for the gallbladder removal. She doesn’t understand why I am so frazzled and confused over all of this. Can you please give me your take on this whole situation? I realize you are not a physician, but having experience it in real life and having done an amazing amount of research, I would certainly appreciate any input you can give me! Thank you so much!
Hi there, we are not doctors however by your description it almost sounds like she has cirrhosis and in the first stage of that. The purple on her legs could be something called cyroglobuniemia. She needs to be seen by a hepatologist who can evaluate her. Without a liver specialist you won’t know how sick her liver is.
Has she had a biopsy? Without a biopsy or specific blood work the doctor can’t know the condition of her liver. If he is just going by liver enzymes, that is not enough to know. I am so sorry you are going through this. I understand your fear and concern. Please try to get her to see a liver specialist who will explain what is happening. She is so young. I guess we could assume they will tell her when she goes to the hospital but you know what happens when we assume. Hand in there sweetie, I can only imagine how afraid you are. She is in poor shape. My best to you, Dee
Hi there, I have a diagnosis called Primary Biliary Cirrhosis rather than hep C. But a lot of the symptoms are similar. I was diagnosed about 6 years ago and at the time was Stage 2. The only real way to be sure is with a biopsy of the liver, and she will need to see a liver specialist to get that arranged. Since my diagnosis I have had two kids, gotten married, bought a house and generally speaking “lived life”. I am tired – a lot – but I balance things out with naps and keeping to a schedule that doesn’t allow me to over due it. Once I started getting treatment I improved greatly. Prior to my diagnosis I had been in a lot of pain, itchiness, tiredness, infertility and a host of other things once I started a treatment regimen I went back to “normal”. My doctors say that I likely developed PBC in my late teens/early 20s but I wasn’t actually diagnosed until I was 30. I am now “end stage” and will be transitioning to a transplant specialist in the next year instead of my personal liver doctor – but even in end stage it could be several years before my transplant. My meld score is still only a 6 (has been as high as 8, but varies a bit). The first thing for your daughter to do will be to get a liver specialist and then get a biopsy to confirm her stage. A good diet high in protein and low in sodium will help with symptoms, especially the swelling. I am still working on a good diet, but i try and so far I’m hanging in there. I think it is important to not “freak out” but also take any diagnosis seriously. I hope you and your daughter find that balance. Good luck on this journey!
Gosh, our stories sound so much alike. I appreciate your taking the time to post. It helps a lot for any of the best friends who log on to read personal stories. It helps us to see that we are not alone.
It’s awesome to see that you are truly living a full life. I had my transplant 18 months ago and it has been absolutely miraculous. I pray for you to stay strong while “living life” through the stages. The good diet and staying active is certainly what helped me to get through this journey. Oh how strong we become when we overcome obstacles like this.
My heart is with you!!! xo Karen
Hi Karen, I am writing about my brother he was told he has end stage liver disease, he has the swelling of the stomach, and legs and feet, but the legs and feet has went down. My brother had mental changes, and was in a coma four days, my brother doesn’t eat right, he eat fried chicken, and plenty of sweets. The doctors came done one house visit and was told he have weeks, or 6 monthss to one year. But my brother never want us to be around when the doctors are around, the only reason we received the news we did was a nurse came outside and told us. My brother was also diagnosed with bells palsy, diabetes. His ammonia level was 260 I only have one brother and I love him dearly any information would be greatly appreciated. We just do not know what to do at this point but pray please email me. Thank you so much. Casondra
Hi there, I am so sorry to hear about yur brother. I am guessing he doesn’t want anyone to know how sick he is. He should cut out red meat, limit fried foods, processed lunch meats and salt. Limiting salt would help with the fluids and swelling he is experiencing.
I have met people who were able to turn their lives around when they change their diets. It would have to be a drastic change. He would need to up his intake of water, not drink any alcohol. Eating fresh fruits and vegetables would be good. I remember when Karen was first diagnosed, she was afraid to eat anything so pretty much stuck to oatmeal and yogurt. It is in her story on her main page. She also had a part of her site devoted to eating healthy for the liver. He needs to get on a prescription called Lactulose, it would reduce his ammonia levels and help him think clearer. If he could clean up his diet, it could also help his diabetes. I hope you can find some help for him, take care and thanks for asking. You are a good sister, I am sure he appreciates you.
Here is the address for suggested foods for you
https://www.ihelpc.com/liver-loving-recipes/
My 29 year old son has full blown hep c, no matter who I talk to, they can’t give me answers. How long does he have to live, since he’s a recovering drug addict, he was told he cannt get an organ transplant, but can I give him part of my liver. I’m devastated, I’m not ready to lose my son, thank you in advance
Hello. Does your son have a liver specialist? He is very young so may not need a transplant. First he needs to see a doctor and be evaluated. That would be blood work, perhaps an ultrasound. It is possible that once he gets rid of the HCV which is attacking his liver, he could improve. I have been cured for over 4 years and improve all the time. Take Care, Dee
I am new to all of this and very ignorant to hepc I’ve been looking up and reading a lot about it but it is all hard to understand. I just found out I have it and at first I had no symptoms but now I hate being in my own skin. I have red bumps all over my body that itch horribly. I’m itching so bad my whole body’s covered in bruises and the bumps just keep coming all over. I feel like bugs are in my skin. I keep getting blisters on my lips and my mouth is so sensitive to different foods almost as if I burnt my taste buds.I’ve has blood work taken and they said my liver is swollen at a 3 on a scale of 1-4 so I’m not sure if that means I’m in stage 3 or what? My enzymes at the time were 25million. Idk a bunch of other stuff. I’m waiting to find a specialist till my doc gives me the referral. My body aches constantly and I have no energy and yet I don’t sleep good at night at all I’m just exhausted and get lots of headaches ugh…idk if some one can plz help me with some answers? And what type of foods I should eat because I’m barely eating.
Hi there.. I read your comment and started itching just remembering! Oh my gosh, the dreaded Hep C skin itches. I’ve written about that. I hope you find my liver loving diet too. I’m getting ready to post a book, but a lot is on this site too.
The mouth sores.. yep I wrote about that. Ask for miracle mouthwash. It will get you through treatment too! Are they getting you staged at a 3 then?
Please eat well. You can be eating a soft bland diet with mostly plants for protein. Oatmeal, toast, nut butter, chicken and rice, beans, and lots of veggies are good right now. Very lite on the salt too. There are a lot of ways to help your body to relax during the day. Using the same tips will help you sleep better at night too. So avoid caffeine, even though you are groggy in the mornings. Use a small amount to get going if you must and then back off after lunch. Your body is having a hard time digesting food. It can’t process caffeine very good either.
I hope you’ve heard from the specialist by now. You need some answers. Keep me posted.
xo Karen
Just been diagnosed with cirrhosis. Am I’m scared to death. I have 0 energy. Vomiting bile. And gained 6 pounds in 1 week. And maintain massive headaches. But have no insurance. What can I do.
If I were you, I would go to the emergency room. That’s where I started. They gave me diuretics to help drain the water off. Whether you have insurance or not, you can get health care at an ER. Let me know how this goes…. ok?
The bile vomiting part is not good. Eat soft soothing foods like broth and mashed potatoes. Keep salt intake way out by boiling your own chicken to make broth or get a low sodium brand.
You need nutrition to keep your energy. It sounds like you need something for your stomach too. Ask your doctor about an antacid. I would be careful with anything over the counter. I’m sorry to just now be catching up. All my love surrounds you right now. xoxoxo
Karen
Hello Karen,
My father has end stage liver disease, hep-c. He has been going through phases of coma where he is in and out of consciousness. He is currently taking luctulose and has been recommended the harvoni treatment. My question is, if he does receive this treatment, will it in anyway help his condition? I’m in constant fear for my dad due to him being incarcerated during this tough time. Thank you
Hello,
The Harvoni will definitely lesson the burden on his liver. The Hepatitis C virus attacks the liver. This keeps it inflamed. It’s like he never gets a break. It is a good sign that they are even offering the treatment to your dad.
It sounds like he has hepatic encephalopathy. This is where too much ammonia is in his blood. So taking medications like lactulose and xifaxin can help. I did a youtube on that topic. I’m honestly glad to see that they are offering your dad good medical care during his incarceration. Please keep me posted on how he’s doing.
Much love, Karen
I have had Hep C since the 1980s when it was called non A/B this last year I have a lot more pain and throwing up a lot. In June 2016 they did a fibro scan and found it am stage 3 cirrhosis of the liver. Sad to say I am an already showing more signs such as mental confusion and extremely pain. Today I saw a specialist for my gallstones and he says my liver is very inflamed and tender. In 2003 I was told I was stage one in 2009 I stopped drinking period. I also have severe diabetic neuropathy to which I am on high dosages of pain meds. I am feeling that my liver is further along than what my doctors are telling me
moderation…
I have had Hep C since the 1980s when it was called non A/B this last year I have a lot more pain and throwing up a lot. In June 2016 they did a fibro scan and found it am stage 3 cirrhosis of the liver. Sad to say I am an already showing more signs such as mental confusion and extremely pain. Today I saw a specialist for my gallstones and he says my liver is very inflamed and tender. In 2003 I was told I was stage one in 2009 I stopped drinking period. I also have severe diabetic neuropathy to which I am on high dosages of pain meds. I am feeling that my liver is further along than what my doctors are telling me
Hi Karen,
I am very Grey at the moment and frustrated. I stumbled across your website last night and and blessed to have someone to talk to. I found out I have Hep C 5 months into my pregnancy so far my son is a healthy 3 year old but unfortunately I recently went to get medication to cure my hep C and was told that I have liver damage and swollen lymph nodes around my liver. I was told Flatley by the doctor do not worry about it none of my questions were answered and just wait for the medication in the mail. For the past three years I have been taking everything from bipolar, manic and pain medication and also sinus medication. I had routine blood work done quite often to make sure I was healthy because the bipolar medication is so dangerous for my lover and nothing ever showed up showing warning signs for my liver I stopped taking the bipolar and manic medications and I’m so much better off I could not even get out of bed after taking it for 2 years. I am still taking the Dilaudid and Flexeril and sinus medications. Can you tell me if I’m causing further damage to my liver. I’m also freaking out again worrying about my 3 year old son even though he’s tested clear for hep C should I have him checked again. I have Medicaid and feel it might influence the treatment I receive from my doctors. Once again we are all so blessed to have each other on this site Happy New Year
Hi Karen, I came across your blog looking for information on what to expect with ESLD.
My husband has ESLD due to alcoholism; he’s 45. He stopped drinking Sept 1st. He has been in and out of the hospital this year so many times now I can’t remember how many. He’s currently in the hospital. While my husband is in the hospital, the physicians continue to inform me as to how bad his condition is, but when we see doctors outside of the hospital, it’s, we will see you in a year. I’m told that he needs to have regular blood work and be monitored regularly. I’m told he needs a liver transplant. Because he’s an alcoholic there’s a criteria that he is required to meet in order to even be considered. His doctors have yet to give him a referral so we can start the process and I’ve asked several times. All I want to do at this point is try and help improve his quality of life. He’s digressing rapidly. It seems as though the doctors don’t care since his liver desease is from alcoholism. My heart hurts for him, he’s in so much pain with excessivr swelling in his lower extremities to the point he cannot walk. He’s experiencing HE, his last Bp was 97/36; platletts are in the 40’s but his hemoglobin is 6.2 so they are giving him a blood transfusion. The Dr says he’s not worried about his diastolic number being so low. That just doesn’t seem right to me. Am I missing something? I’ve asked several times this past year about seeing a hematologist since his platelets and hemoglobin are very low and I’m told no since we know what’s causing it.
What can I do? How can I help my husband? Am I not asking the right questions? How can I get these doctors to get past his alcoholism and treat him properly. My husband is a good man; he’s kind and giving and always very loving. but is treated like he doesn’t matter because of how he developed this desease.
The whole hemoglobin and platelets is due to liver disease. His spleen is hoarding platelets and I went through that too. He can get better with time and meds. They may have him on a medication that is keeping his portal vein hypertension down. That can reduce his blood pressure too!
My cirrhosis was from the Hepatitis C virus. My dad was an alcoholic though. He got to end stage and even went into a coma. They gave him lactulose and he began to live a health lifestyle. He didn’t drink for almost 20 years after that. My adulthood was spent with a sober dad who was sick with cirrhosis, but it was so healing. He ate well and stayed very active.
Your husband may benefit from some support to quit drinking. My dad didn’t attend meetings, but he worked hard at it and went to church. His doctors had given up on him too. Then he was stubborn enough that he proved them wrong. Talk to your husband and remind him that there are always options and always hope. Keep reading on here. You’re a wonderful wife to be looking for ways to help him. He sounds like an awesome person. I wish you all the best.
xo Karen
Hi Don my name is Jacqueline and I have just been diegnosd with cirrhosis stage 4 I also have hepc and have had for 21+year’s. I live alone with my little dog candy, family don’t have anything to do with me they have there own families and work commitments. I haven’t been around for more than 25 years so I don’t really know them. I have to go it alone too just like you I am looking for a friend and/or friends to talk to about our illness, feel scared and alone and would really like to hear from you and how you are doing.. what’s happening with the transplant..? I seen your message to Karen was 2015. Happy new year, don’t be a stranger you are not alone.
Hi Don
I am hepc with stage 4 cirrhosis, just been diegnosed with the cirrhosis..!! I am a bit like you I don’t have any family, well family that care.
And I live alone in London myself and my little dog candy 🐶 I am just starting to find out all about the liver and this desease.
I would really like to have some friends out there that understand what we are going through also it’s good to have support.
If you or any 1 else wants to chat please do.
Oh does anyone know if coffee is good for the liver..?? I herd it was, I’m not very computer literate neither. Regards.
Thanks for stopping by. Are there any support groups near London? Get on my Facebook page. ihelpc karen and I have a lot of friends in England and Scotland. Many you can hook up and find support.
You’re going to need help when you get ready to treat. Start talking to your doctor about that and see if you can get it paid for. If you have a Facebook account, you can find a lot of friend who are dealing with the same thing!
Hugs and love,
xo Karen
Hi, my name is Vickie. I am 79. I was diagnosed in 2005 with cirrhosis of the liver. This was a surprise because I do not drink and never have. I am overweight (not as much as I used to be.) I have very low platelets (50,000). My spleen is enlarged and I have hypertension portal. I am a diabetic (and take insulin). I have endoscopies to check for avarices (sp). In fact I had one in December and had 4 avarices banded. Caught a cold and had a miserable coughing, throat hurting time. I have a good doctor, praise the Lord. For my cirrhosis My medicines are 2 propranolol, furosemide, Spiro lactone. For diabetes I take insulin and 2 glipizide. For Gerd I take Omeprazole. For someone who hates to take medicine, I am out of luck. I have very little pain so all my meds must be working. I have no gall bladder and have problems with digestion.
I have researched what I should eat and have a pretty good handle on it, but is there a place I can get information as to what I can eat to not damage my liver more and something to give me energy. I am active, but run out of steam really easy. Any help you can give me would be appreciated.
Hi Vicki,
Well, it sounds like you’re managing your liver disease very well. I have to smile when I think of your age and how strong you sound. Congratulations. Your platelets aren’t too bad for cirrhosis. I’m sure that you are careful about getting bumped. The bruises can come faster and last longer. You are on the exact same meds I was on.
I’ve done a lot of research and experimenting with recipes. I’m getting ready to put out a book with a menu plan and over 200 recipes. It also has great details and hints for how to eat for certain symptoms. I’m working on it today and hope to have it ready in the next week or so. Please check back on the site and let me know what you think of it!
Thanks for stopping by. xo Karen
Dont know if your still blogging. I have been duagnoised with cirrhosis i live in ireland. I have great family support. My question is i am about 15 stone and ive lost over a stone since being diagnoised and am trying to get more down ti be healthier. But i am finding i am goin up and down one day im down to 97.2 kilos then 2 days later its gone to 98.2 or 98.3. My diet is the same i done go above 1500 calories a day and i am a diabetic so i have no sugar in my diet. Can you advise. I hope you are healthy and happy
Anne
Anne,
It sounds like you are doing all the right things. I am not convinced that daily weighing is important. The only real trend you may see is the water weight change. That can be a real problem if you have later stage cirrhosis. You didn’t mention how advanced your liver disease was.
The healthy liver loving diet is truly the thing that gives us some peace of mind. Aim for about 80% healthy and give yourself a break on the other 20%. I mean, we’ve got to be realistic.
Sorry it took so long. I’ve had a busy year and did not keep up with comments and blogging much. Whew! Keep me posted, ok?
xo Karen
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