HAPPY ANNIVERSARY KAREN!!!
One year ago today Karen got her transplant!!
Hello today is 11/2/15, Karen continues to improve from her transplant and I am trying to help as best I can. I had to have back surgery after a summer of pain, then my husband had to be hospitalized had two surgeries in two days and was in hospital for 5 days. My laptop stopped working, so I have had a few problems. If I have not answered I apologize. I am sorry for the huge lapse in updates. My problems started after my last update. Karen continues to do well, she is a marvel. I wish I had her optimism. I and my husband are still limping along from our surgeries 7 and 5 weeks ago. Love to all Dee
7/12 Karen is doing well and is writing when she can, here is a new blog
Coming Home after Liver Transplant
her recent posts can be found on the lower right hand corner of the page
6/17 Hey there, Karen is doing great, she just wrote a new blog
Writing a Thank You letter to donor family
Hi there, My name is Dee. I am a friend of Karen’s. I am a little nervous to write my own post…here goes. Karen got the transplant call early this morning. She went to the hospital. When she called me she was waiting and was “hunkered down” for the surgery.
I am asking everyone to please pray for Karen, her surgeon and her family. the donors family. I probably won’t know anything for a while but I wanted to at let people know that she is having surgery. I will provide updates as soon as I am able.
UPDATE 4/13 8AM I just heard from Karen’s husband, the transplant just started a few minutes ago. He will let me know how things are going. God Bless him, I was so scared when I had not heard anything. I started searching the internet with some naive thought that I would see something, anything about Karen. Silly I know. I did read on her twitter account that there might be an issue with the liver size yesterday but they were going ahead with it. She is such a tiny thing with the biggest heart. I was so relieved to hear something. I wanted to share with you all.
UPDATE: 12PM First report from operating room, they are ahead of schedule, everything is going well. Thank God!!
UPDATE: 3:30 PM. I am so excited, I heard from Karen’s hubby, what a guy!! The surgeon said everything has gone perfectly! Thank God! I will update as I hear more however I expect it to be quiet for a bit as everyone gets some much needed rest. Thank you all so very much, I know that it will really warm Karen’s heart to read all of your posts. I am so happy I can’t stop crying.
UPDATE: 6:30 PM I heard from Karen’s daughter. She is in ICU and is doing well. Everyone is happy with how well she did. I continue to pray and hope you all will as well.
UPDATE: 4/14 3PM Imagine my shock this morning when I saw that Karen said she was feeling better two hours after she woke up. I was so sure someone must have typed it for her. Then I saw that she had updated her Facebook and Twitter. She is doing well, got up today, sat in a chair. I feel like this is such a miracle. I am so happy for her. She may be moved from ICU today. I will update as I hear more. Thank you for all the prayers. I firmly believe they are working.
4/15 Karen continues to do well though she is in some pain and tired. That is normal after major surgery. I hope everyone is doing well.
4/16 Karen is doing well though up early due to pain. I hope she can get some sleep soon. I found a picture of Karen that was taken right after her transplant. I hope it is ok that I share it. I felt so much better to actually see her, I hope you all do too. Hugs, Dee
4/17 Good Morning all. I heard from Karen, if all is going well she may be going home today! She must really be doing well to go home so early. I tried to look up information about transplants. I found that the average stay is about 2 weeks after transplant. Some people go home earlier, 5 to 7 days. Karen is beating that. I am sure she would love to get home to her own bed. I felt that way after my surgery. Those hospital beds are not the most comfortable. I am continuing to pray and hope you are as well. Karen will be reading all of your posts so I want to say thank you again. Bless you all for your support of Karen.
oops. I forgot to mention…more great news! Karen was told that the cancer in her liver was contained. That is such good news, it means it did not have a chance to go anyplace else. Thank God!! Everyone praying is really helping so much. Thank you all, Dee
3:30 PM I just heard from Karen, she has been in training all day , since early this morning, in preparation of her going home. They just took the IV out of her neck so she is laying down now.
4/18 Good Morning. I hope everyone is well. Karen went home last night. I am sure she is exhausted after her day of learning yesterday. I hope to hear from her later and will let you all know.
4/19 Good Morning, I hope everyone is doing well. It is a beautiful day here and I hope it is nice where you are. Karen is doing well.
As I have been going over this blog, I have found it is huge! So big I have gotten lost several times. I thought I would share this link. It is a place to start
4/20 I heard from Karen this afternoon. She had a doctor appointment today, the doctor said she is doing well. I was happy to hear from her. I hope everyone is having a good day 🙂
Good Morning, all is well, I wanted to add Karen’s story for anyone who hasn’t read it. I thought others might be interested in the beginning of her story/blog
4/24 It doesn’t seem possible that Karen had her surgery just about 11 days ago. I spoke to her this morning. She is trying to rest as much as she can or I should say as much as her wonderful friends can get her to rest LOL She sounds good, strong. Her doctor said she is doing well , her sutures look wonderful however she needs to remember to rest.
4/27, Hi all Karen was having some fun yesterday doing make up, doesn’t she look so nice? She is standing with her friends who are taking such good care of her. She looks beautiful. I thought I should share with you
5/1/15 Karen had her staples taken out yesterday, she is doing well. Trying to rest and recover. The doctor said she is doing well, I hope everyone has a nice weekend, Dee
Need more info? Click here for a link to blog menu and archives by topic
https://www.facebook.com/ihelpc.karen
5/27/15 I just wanted to pop in an say that Karen continues to do well. She is moving around and luckily the steroids are being reduced.
UPDATE 5/28 – Karen is doing well, she has gone home, she has actually had to deal with everyday problems like buying a new washer. She is doing well, she is resting, she is not on the computer a lot right now but I am sure she will be back very soon. I hope you all are doing good too. Bless you all
6/5 Karen just wrote a new blog! It is great! Love to all
Going back to bed after transplant
Hey y’all! If you would like to say hello to Karen, please go over to her Facebook page: https://www.facebook.com/ihelpc.karen I am sure she would love to hear from all of her Besties 🙂
78 thoughts on “Prayers for Karen – UPDATES”
Thank you Dee for your post, you can be sure that I am praying for Karen. In the past year or so I’ve read every post she has posted. She’s also answered my questions when I ‘d asked her about my situation which is very similar to what she was going through.Karen is a strong lady and I know with Gods help she will do just fine.
Please keep us posted and thank you Dee.
Della
We’re with you Karen. Sending all my good thoughts and prayers your way
Dave
I am really excited to hear that Karen is finally getting her new liver. Yes, it is a time to be nervous, but I am visualizing her victorious recovery from surgery and her first exuberant post upon returning to the world with a new life. I can’t wait to see it.
I am sending my very best thoughts to Karen now!
Jim Gordon – Survivor
– SVR from HCV for 2.5 years and in stage 3 cirrhosis.
– Recovered illicit drug user
Hi Dee. Thank you for letting everyone know! Karen will have no shortage of prayers! She is loved by the entire HCV Community. She WILL get just the right liver! God Bless you Karen ….. and you Dee for helping during this critical time. (((Karen)))
Peace
Pam
http://www.facebook.com/healsofthesouth
Hello everyone! Gosh I am so appreciative of all of the responses, you all are so wonderful! I know Karen will really appreciative when she can read your words herself. I promise as soon as I hear anything I will let everyone know. No matter the time. I will come back and keep you up to date.
Bless you all
Dee
p.s. thank you for your patience while I learn this system. I may have needed a bit more training ha ha
My thoughts and prayers are with you! You will be better soon hang in there!
Lynn
Praying and looking forward to updates. I know her new liver will be perfect!
I am praying for Karen. Please keep us posted with updates.
She’s too strong, she’ll not only make it, but come out with a great experience to tell. I can’t wait! 😉
Dee,
Thank you for the update. Went to her facebook page and was elated to here she is finally get her liver. Prays go up for her, her doctors and the donar family. They are giving the grettest of all, at the same time suffering like no other. Just went throughw TACE procedure Monday and hope to be involved with best friends. God Bless, Karen. And all thatbshe has shared with us in her blog. I pray her body accepts this new gift and she will continue to get stronger by the day. Blessings, Kat p.s. Please let us know how she is faring.
Hello I know that Karen will be thrilled when she reads all of these loving caring comments. I posted on her FB page in the hope I could let as many people as possible know and selfishly garner more prayers for our girl.
I bet she will have an amazing story to tell. I looked up liver transplants late last night and found that the operation could take 4 to 18 hours, WOW. There could be up to 3 surgeons, 2 anesthesiologists and 4 nurses. It is huge.
I am hoping to hear something today. I know she said she could be out of it for a bit. Please keep your prayers coming and I will let you know as soon as I hear anything.
Kat, funny, Karen had her ablation on Monday. I pray that your procedure went well and that you are feeling ok. Take care of yourself, drink water.
My best to all
Dee
Again I am new to this type of correspondence, I hope I am doing it right.
Praying for her
Hello, thanks so much for all the prayers. I “think” I updated above but want to make doubly sure.
Karen’s husband has contacted me to say that her transplant just started about 8 AM
I am so very grateful to him. I was so anxious all night, worried what I would say this morning.
On Facebook or Twitter Karen said that the doctor said with the liver from yesterday size might be an
issue. I am guessing it was and another liver was found.
Thank God for the donor and the donor’s family for giving Karen this gift of life. As I write this
I can’t hold back the tears.
It had to have been a very long night for all
involved. Please continue to pray for our little chick. She is so precious, words can’t convey my
feelings right now.
If there is anyone that can update on her FB page, or Twitter page, I know she would appreciate.
Dee
Thank you for the update on Karen. I have been reading her blog for some time and she has been such an encouragement to me as I too will be facing a liver transplant in my future. I have stage four cirrhosis with HE. I have been praying for her and her family. I am so happy that she received the liver and so grateful to the donor family. Please continue to keep us posted. God bless you.
Thank you, Jesus ! Hearing all is going to plan in nothing short of a miracle. Dee, thanks for hours spent trying to find info in the net. I have a 9 yr post tp friend and is back working as an rn. Karen will do great. She really takes good care of herself and deserves the best. Continuing to pray…. Kat in Cali. Please relay our best wished to her for a speedy recovery and acceptance of her new organ.
And forgive my hepatic enchephalopathy. Everyone appears to decipher it. All my best to Ken her family and all other who care
Kat you are doing a wonderful job. Thanks so much! Dee
Hello there! I am very very happy to let everyone know I just heard from Karen’s husband, the surgeon has said that everything went perfectly. I know that once she is better she will respond to everyone. I am sure with her wonderful spirit it will be sooner rather than later. I am thanking God that we will be hearing a new story from Karen.
I will update as I hear more. Thank you all so much
Karen has been through so much and my prayers are with her.She has a gift in the way she is able to convey her experiences to the rest of us.Whenever I am feeling down and overwhelmed in my battle with HepC I read one of Karen’s posts.They give me encouragement and I say to myself that if Karen can still be positive with all she has on her plate then it’s time for me to pull up my socks and keep going.
You can do it Karen!!!!!
Dee ,you are doing a great job filling in.
God bless you karen! Praying for you
Hey GIRL! Are you actually tweeting? I just joined twitter so I could let others know how you are doing. Sorry I should have known you would have it covered as well as your FB.
I have to say that I had no knowledge of all of these other sites you are involved with. You are my shero! It sounds like she-ero. I heard it yesterday and it was so timely for you my dear friend.
Your hubby and daughter have been so wonderful in updating how you are doing.
I find myself very emotional and thanking God that you are doing well
Love
Dorene
Dee Ernst recently posted…Prayers for Karen – UPDATES
Hello all, this is Dee approving my own post.
I just saw Karen tweeting and I did not know if it was Karen or someone who was helping her. I have never had an account before but got one to try to keep up with Karen. Someone on there re-tweeted my post to 4,000 followers!!
WOW! I am amazed by the energy she had while going through decompensation, diagnosed with HCV, vomiting blood,banding of varices, cancer and treatment. She will now be like a humming bird, I will never keep up LOL Thank you God.
She texted me this morning and is doing well, she was about to go back to bed. I hope she will also rest.
I believe in the power of prayer and it sure is working for the woman we all love and admire. Our shero 🙂
Love to all Dee
Thank you
My prayers are with her. I did not understand from her blog how close she was to transplant. Let us give her and the medical team and the Lord time. She must rest and recover. Please keep me posted.
Hi Barbara, if you look over to the side of the page you will see Karen describe her recent Ablation for her liver, before that she had a TACE procedure. She was having those things done so that she could stay on the transplant list. Sometimes one can become too sick to have a transplant so the doctors were trying to help her remain on the list. It is really frustrating to me. I understand that you have to be sick but you can’t be too sick. So..by controlling the cancer they were helping her. I know how confusing this all can be. I know I have been confused. She also wrote a post called “I don’t want a transplant”
I know Karen will be so happy to tell everyone her story when she recovers.
I agree with you, she does need to rest, recover
Thanks for writing, it will mean so much to her.
Dee Ernst recently posted…Prayers for Karen – UPDATES
She (Karen) helps me understand what a transplant is all about. I just know in the lab, heart, liver VERY IMPORTANT PATIENTS. transplants………….dedicated lab staff to evaluate during surgery, to help the transplant team with the best outcomes, as far as blood, thinning of etc. I am so praying for her! Just know that I understand. I care and I am praying for the best outcome!
Thank you so much Barbara, really nice of you to get back to me. Karen is doing well and she really appreciates everyone writing to her. As soon as she feels up to it I am sure she will be on here telling us her story.
Have a good night, Dee
Dee, thanks so much for keeping us updated and truly thankful that little Karen is so strong in every sense of the word. Amazing! I pray she continues to grow stronger each day and also big props to her dr, and staff who are caring for her. And her loving family!!! Hugs, Kat
4/15/15
Glad to hear that everything is going well with Karen. My prayers are with her.
Dee, love reading how well Karen is doing. I have an RN friend who was transplanted coming up on 8 years in Nov. I cannot express enough gratitude to her donor’s family as she celebrates every year in remembrance. I myself am wait listed due to hcc after clearing the virus in Sep. Recovering from the TACE procedure I came across ihelpc. Having been there myself, I know exactly how you feel and commend you on being such a loving and supportive friend. Give my best to Karen. Blessings, Kat
Hi there! Thanks for your very kind message. Everyone’s posts have been so nice. I am in awe of how well Karen is doing. I thought it would be days before we heard anything. I was shocked when I heard halfway through and then the end of surgery. Then to read her posting saying two hours after she was doing well blew me away. She doesn’t remember doing that now 🙂
Last night she was tired which after major surgery she would have to be. This morning she is in pain but still doing well.
I will continue to update, I really appreciate everyone posting. I am sure as soon as Karen is well enough she will be reading and will come back to tell us a doozy of a story. She posted a picture on Twitter or maybe Facebook. I will try to see if I can bring it here 🙂
Kat I hope you are doing well, I am praying for you. Karen’s story about the TACE and then the ablation was really informative.
Take Care everyone
Dee
Thank you for the update posts, Dee. You are truly a blessed friend.
Praying for all; so thankful to God!
Pat
Hey there Pat, thanks for writing in. I know that Karen will really enjoy reading each and every post sent to her. Someone once told me that for every post there are many many people who are reading. To everyone reading, please continue to pray for Karen. She is doing very well though in pain and tired she is still the optimistic person we all love and admire. She has a lot to give and I am a better person for having met her
Love to all
Dee
Hi everyone! I just got off the phone with Karen and she sounds WONDERFUL!!! I cried because I’m so happy for her!! She is a wonderful lady and she’s taken her health issues with graceful stride! I am so proud of her and am so grateful that she was able to receive this wonderful gift.
Karen- We’re all keeping you in our thoughts and prayers. I can’t wait to see you when you get back to town. Lots of rest in the meantime. I LOVE YOU CHIC!!!!! You’re amazing!!!!!
Oh…thank you so much! I am so very happy to hear this wonderful news! I agree, she is amazing! Such a wonderful attitude…always so positive, caring, helpful to others. She does need lots of rest, that is for sure. I am so glad you were able to talk to her to see how she is doing. Thank you for sharing. I know everyone appreciates hearing how she is!
4/17/15
I am so glad Karen is doing well. Almost everyday I am reading to see if new posts are coming in, My daughter was diagnosed with Cirrhosis I have been crying every single day; cannot stop but when I come to this site I feel better cause everyone gives each other confidence; making me feel better.
Linda.
Dear Linda, I am so sorry to hear your daughter has been diagnosed with cirrhosis. It is an awful thing to hear. I remember when I was diagnosed. I thought it was a death sentence. I did not know much about it. I did not understand that one could live with it. I was so afraid. I was cured of HCV 3 years ago and I improve every day. I was told that once my liver was not being attacked on a daily basis it would improve. I pray that your daughter can improve as well. Karen has created a really nice safe place where we can come and talk to each other, provide support, share our stories and learn. I have learned a lot since coming here. Thank you so much for writing, I appreciate hearing from you. Dee
Hi there! I found an article that might help you. Karen has so many, This one is called Cirrhosis is not the end. I know it is difficult to believe that. I originally thought it was death sentence. I hope this help you. She also has something called Liver Loving Recipes at the top of the page on the right hand side. If you have trouble, let me know, Dee
https://www.ihelpc.com/category/hep-c-and-cirhossis/page/25/
Hi there Karen had this article for what foods are good for people with HCV and the liver. I thought that this might help you with your daughter and her liver. I know she doesn’t have HCV but the good stuff for the liver should help a little. I hope you will keep in touch. I know that when Karen is better she will be back on here and will be reading everything. Hang in there, I am praying for you and your daughter. You are a really good Mom to try to find help.
https://www.ihelpc.com/what-foods-are-good-for-hepatitis-c-and-liver/
One more thing, Karen your picture looks great. Get well soon.
Hi, I thought I would put her picture up because I knew how much better I felt after seeing her post it on another site. Not knowing if others could see it I decided to share here. Bless you and your daughter, Dee
So thrilled and amazed Karen got to come home Dee!! I just saw my doctor yesterday and am fighting HE right now. It is bad. I am SO encouraged by Karen’s wonderful outcome. I’ve been praying daily for her. I have been terribly discouraged in recent weeks but Karen’s story has given me renewed hope! Thank you for sharing. I will keep reading updates. May God bless you.
Hi there, I am so sorry to hear about your HE, it is awful. I know that there are times I have it though my doctor disagrees. Sometimes I just can’t think straight and it scares me so much. I am going to go to the doctor but was waiting till the flu season was over. I sure don’t need or want the flu. I heard from Karen last night, she had a big day and was tired. This morning she continues to do well though still trying to balance activity with over doing it. I know all about that. When I feel good I try to catch up and I do that until I can’t move. I am hoping that Karen is getting a lot of rest, that is the deal she made with her doctors. We don’t want to “tell” on here haha
Love to all,
Dee
Just love reading the updates and how well Karen is doing. May she continue to do super human recovery :).
My post is directed to Linda as I wrap my arms around you finding out about your daughter’s cirrhosis. It is information none of us want to hear, especially your child, no matter the age. I lived with compensated cirrhosis for over 17 years and if not for getting the cancer I would be doing well with diet and exercise as my liver is also fatty. Please read Karen’s other pages on nutrition. Those green juices helps so much and salt is our enemy. My heart goes out to you but remember if she takes good care of her liver, she will do well. You and she are in my prayers and please keep posting. Love to all, Kat
Oh and some day I will learn to type without errors…..NOT!
You are doing really well, you are sharing, sharing is caring. I love that. Dee
Dear Kat, you are doing a great job. I have spelling errors all the time. Please do not worry about it. The most important part is that you are sharing. I appreciate you sharing and writing to Linda is wonderful. I just sent her an article called “Cirrhosis is not the end”
I did not know that when I was first diagnosed, I know now that we can get better, we can improve, we just have to help our liver work better. Water is a big on. Being careful of everything we eat, drink, put on our body. Everything has to go through the liver to be processed.
Thank you again for writing. So kind of you. I know Karen appreciates. I heard from her this morning, she is trying to find the fine line between activity and doing too much. She will get there, Dee
Hi Dee and Karen, Karen should be resting entirely to get her mind, body and soul repaired and loving her new liver. there is much to read on the blog and videos to watch. I have learned quite a bit since being here. One thing is that we all can be on information overload so to take in a little at a time is best for me too. I find out next month whether or not the TACE procedure had any effect on the tumors. Praying so. I continue to live life but find recovery a little more than anticipated. I suppose different with each case. One thing is for certain, I will gauge my strength by Karen’s positive attitude and loving attitude towards others. Be strong! Heal and soon there will be no limits. 🙂 Kat
Hey there, I am sorry you are having problems after the TACE, I think that we all heal at a different pace. I know in my case I always take longer than the average person. Or that is what the doctor always says. I pray that it worked for you.
Karen went to the doctor today and they said she is doing really well. I am having problems with the computer today. I have tried to respond to you twice and lost them both times. Gosh I hope this makes some sense, take care my friend. My thoughts and prayers are with you
4/20/15
Dear Kat,
Thank you for caring. Good feeling how everyone cares; gives me a lot of support I like how your telling me about the hugging. I wish it was real can use a
hug. Hers is not compensated, but I keep reading all this stuff where someone was in my daughters situation where it was decompensated; he brought the liver back to normal with herbs., I wonder how much this patient had to pay; it a shame that the Doctors only care more about the money than more of their patient.
My husband has a friend the daughter is a RN; she was saying it close to the end; there are ways of healing; it can cost for injections up to $10,000 a month. I am so sad; cannot stop crying, cannot work it is really hard.
But I do appreciate the support & thinking of me. Thank you.
4/20/15
Glad that Karen is home & is doing well. Actually my daughter has an appt with a liver Dr. tomorrow & are crossing my fingers & praying real hard.
I have been seeing her on the wkends & she looks ok I am praying extra hard cause for some reason I do not really get a lot of luck & a few yrs ago I did loose a baby. I think thats why I have been crying more. I know it seems like I am too negative, thats why my
daughter says mom that why I dont tell you anything cause you worry too much. She is diabetic as well thats what hurts more, she never likes to listen.
Anyway, I am looking out for more updates for Karen & my prayers are with her.
Hi there, I am so sorry, I did not know that your daughters liver damage was decompensated. I have read of others who have improved their health by completely changing their diets, eating only whole foods, no red meat, pork or fried foods. Eating foods good for the liver can improve its health. Drinking water helps the liver work better.
Sorry if I am repeating myself but once the problem of the liver is taken care of then it can heal a bit. Of course everyone is different. For some reason I thought your daughter was under 30 and so think anything is possible.
I am glad that your daughter is going to a liver specialist, he can tell her what she can and can’t do. Even tylenol can hurt the liver so if she takes that it should be under 2,000 mg a day, or at least that is what my liver doctor said. Like Kat I wish I could give you a hug as well. I am a Mom and I can understand how you are feeling. Please hang in there, can you go with your daughter to the doctor? It is a good idea to have more than one person. Sometimes the doctors talk so fast you need two people to remember. Taking notes is a good idea. Please let us know how she is doing. We are praying for you. Dee
4/20/15
Thank you. She is under 30 she going to be 28 this July. If you or Kat ever come to California let me know, then I can get a real hug.
Thanks for you guys support it is appreciated.
Just quickly there was this Dr. in Canada & a patient had Cirrhosis & Liver failure. He got the patient Brown Juice, LC Balancer & Xcel Capsules from a Laboratorie called Wei Laboratores. After 3 months his liver went back to normal, some people have luck, I’m praying so hard for my daughter & thank you & Kat for your prayers & support as well. I wish I had friends like you. Sometimes it doesnt feel like my daughter tells me everything that actually bothers her & I feel something wrong, but when something bothers her she tells her boyfriends sister she never tells me anything, cause the sister once told me some things that my daughter would tell her. Anyway take care will be looking also for more of Karens updates.
Dear Linda, I just went back and read everything. I am so very sorry. There is treatment for the Hep B, and if she were to stop drinking I think she could improve. I am not a doctor, just another person trying to help. I know this must be so hard for you. I would only do what the doctor says to do. I am sharing this with you because I understand. When I was diagnosed with Hepatitis C I wanted to try something natural to help me. I did it for 6 months, there was no change, that was when I realized only a doctor could help me. There are many people out there, they used to call them Snake Oil salesmen. they prey on the sick and the weak. They only want our money. They don’t really care about us. I was upset when I realized that I had wasted my money but at least I did realize that it wasn’t going to help. I don’t know anything about the items you mentioned above but I will take a look. I do think the best thing she can do right now is to talk to the liver doctor and try to improve her diet as much as she is able. I don’t know if you saw this but after Karen was diagnosed with cirrhosis she was afraid to eat anything. She was eating oatmeal and peanut butter. She did a lot of research and found the liver loving recipes as well as the food you could eat at a fast food place. It is on the page in the upper right hand. Also, over on the left hand side is a place called best friends start here. I know this must be so overwhelming. I remember how I felt when I was told I have Hepatitis C, then cirrhosis of the liver. I thought I would die. That was back in the end of 2007. Sorry if I am repeating myself. I just wanted you to know that there is help. I have seen people with very bad livers get better by completely changing their diets. I have diabetes as well. I was told it was called liver diabetes. It happened because my liver wasn’t working well. I will try to find more information for you. It will probably be tomorrow some time. Many many hugs for you and your daughter! She is very young, I pray that she can recover. I don’t believe it is too late. I am 58, it wasn’t too late for me. Please don’t give up hope. You are a wonderful Mom to try to find help. Dee
4/20/15
Thank you soooo much. I know it just that they say you can get Cancer & I am scared cause I cannot be on top of her as much as I would like to be.
A friend of my husbands was saying why I let it go too far, well first of all she & her boyfriend do not work & I do not think that he is supportive enough. I worry about her pancreas cause she is also diabetic.
But when she went to a GI if it was so serious woulnt he have told her already. I will up date you & thank you.
Hey there, none of this is your fault. You did not do this. You won’t know how bad it is until she is tested, i.e. blood work, testing of the structure of her liver etc. You are right that the fluid in the ankles and bleeding gums is bad however it could be because she is drinking and not eating right. Liver disease is a silent killer. Your liver can be 80% damaged and still do its functions. I did not know I had anything.
If you look at Karen’s story she did not know until she was placed in the hospital how bad she was. She had symptoms but her doctor just did not recognize them for what they are. I will get that link, it may help you. I am praying that today your daughter will get some answers. I am so sorry. I will get that link, just in case.
Did the GI doc refer her to a liver specialist? Just curious. More soon, take care. Dee
Hi there, is a place to start
https://www.ihelpc.com/about-2/best-friend-guide-to-hepatitis-c/
I understand that your daughter doesn’t have Hep C but everything else would apply. Karen was well into cirrhosis when it was discovered how sick she was. She talks about being tired all the time, not knowing why. I can’t imagine how scary it must have been for her to think she was fine and then be admitted to the hospital for many many tests. I will try to find that for you. Where ever you post I will be there, just want you to know you are on my mind. This is not your fault, you did not do this. I know, as Moms we think we can make everything okay, then the children grow up and all bets are off. There is nothing we can do but love them, be there for them. I know this is easier said than done, I am a mom to two. I worry all the time but know in my mind they are adults and I can’t make everything okay. You did not let anything get too far, she did. Please hang in there. I hope you can get some answers today. The doctor will do a physical exam and will be able to tell some things, if her liver is swollen, if she had spider angiomas on her skin, etc. Did she have blood work done yet? Please keep in touch. I get lost on here sometimes, I did not realize how big this blog of Karen’s was. I know there is her story and I will find it and send it to you. My thoughts and prayers are with you. HUGS Dee
4/21/15
Dear Dee:
Thank you for your prayers. When she was in the emergency 1 1/2 yr ago her boyfriend went with her; I think she already had Cirrhosis so I get up set is why she didn’t go I asked her; she told me back then mom I was feeling fine, I told her you don’t have to wait for
pain for you to stay overnight; they would take blood work; everything. When I went with her 6 mo after the medical Dr said they do not have to stay, so that night she stayed. When my husband next day spoke with Dr. he was saying the Liver was severely damaged &; there’s a slim chance; I was hoping when she gets checked that the Liver Dr. will say it not bad as it looks, that is what I am praying.
Will check back later for updates on Karen. Do you know how long someone has to wait for a transplant or have any ideas.
Hi there, I am sorry to say you can feel fine and have severe damage. As I mentioned earlier the liver is remarkable in its ability to continue to do the 300 plus functions it is designed to do. I did not know that I had cirrhosis until my platelets fell very low. At that time I did have the spider angiomas but I did not know what they were. I thought it was just part of life. They may show up on the upper body are a cherry red color dot with little squiggles all around that looks like a spider.
Swelling of the ankles can be a sign. Is her stomach swollen? That is definitely a sign of advanced liver damage. Does she seem to have any problems with her thinking? I pray that the doctor can give you all some information. Unfortunately there are alot of MD’s that don’t know much about liver disease. My doctor did not even understand that my platelets were low because my liver was damaged so my spleen was holding on to the platelets. I don’t understand a lot of it but my blood specialist explained that. He told me not to take any aspirin as aspirin can paralyze the platelets for a weeks while advil does it for 3 days. He said I had to weigh the risks vs benefits.
So…when your daughter gets blood work done she should try to make sure she hasn’t taken these things or had a drink in order to get a good test result. It is a lot like when an ultrasound is done of the abdomen, no eating is allowed after midnight because gas in the intestines can cover the kidneys so they can’t get a good picture. Take Care, Dee
4/21/15
Dear Dee:
Thank you for your confidence, her bloating went down but she is a little bloated again, I told her your probably eating too much sodium as well, my
daughter & I are slight heavy so when she was getting bloated I never payed attention to this liver prob. cause I didnt no what it was I just kept thinking either sodium same thing when her ankles got swollen cause I remember how bloated I was & before I was about 300lb so at that weight you look more bloated than ever, & when bleeding from the gums thinking only gingivitis took her right away to dentist then the bleeding seemed to stop a little. It hurts so much & thank you for your prayers.
All of you are so sweet. I will update you.
Hope Karen is doing well. Reading everyone stories makes me feel better. Everytime I go on line looking the prob with cirrocis they say you dont have a chance those are the pesimists You guys are so optimistic.
It just about a few yrs back I lost a baby. I cant afford to loose another. I love her so much. I still feel like she hurting inside about something & will not tell me that what hurts the most. She always tells the boyfriends sister things. She tells me she does not tell me too much cause she doesnt want me to get upset & she knows I worry but it still important for her to talk.
Anyway take care. Love to all of you. Thanks for listening you dont know how much better I feel I wish one day I can meet you guys.
Love Linda.
Hi as far as getting a transplant. I know that you have stop drinking for 6 months before they will place you on the list. Also it is different in every state. For example, in CA the wait is long, in TN not as long. There is a number they look for called a MELD score. They take a lot of your test results to come up with number, i.e. your blood work, any imaging they have done, any other problems you may have and come up with a number to see if you qualify. They may want to treat her Hep B first. I will look for more information and get back to you. Most of all I want you to know you are not alone, there are many people praying for you right now. They may not write but they are thinking of you. They understand what you are experiencing. Your daughter is very young, I just can’t believe that she has that much damage but of course I am not a doctor nor have I met her. Youth is on her side, she also has you and her Dad. Please try to take comfort in the fact that there are many people out there who have no one. Your daughter is lucky to have you my friend, Dee
4/21/15
Dear Dee:
You know the expression everyone deserves a second chance. I am so happy that things are going well for Karen, she deserves it we all deserve Happiness.
I wish all of you a Happy, Brightness, & Joyful day & lots of Blessed ones to all of you & who have responded back to me & making me feel a little bit better.
One thing I will never forget one time I went to the Dr. & my daughter was having pain went to the Dr & he said this time your lucky but next time you may not be so Lucky & look what happens. I cannot stop crying & I do not know what to do, I am praying not just for my Daughter but everyone. Love you all be well & take care. Love Linda.
Hey there, did you find anything out for your daughter? I am thinking of you.
Dee and Linda, sorry about chiming in late, as usual. A truly bad night for me as much of pain is intolerable I too take minimal Amy of pain meds or Tylenol. I have multiple tumors so required quite a blast to the entire right lobe. Dee is phenomenal with the amount of information she provides as Karen is healing from her transplant. I am such a woos and terrified, however I live in Ca and they typically transplant here with a MELD score of 35 and people are transplanted at 40. I would say fortunately for me I am very low post treatment which translates to slim chance of Tp. Sometimes insurance plays a huge part in either being Dual state listed or one out of state.
Linda, as Dee stated she has youth going for her and being in a good positive place is key. Your support can do wonders. Hopefully you can convince her to open up more to you.
Dee just want to say that keeping this site updated for Karen and going the extra mile to research is appreciated. This is the place to go for answers when the Internet can be so overwhelming. Thanks. And good to see Karen is doing so well. :)))) Kat
Hi Kat, I am so sorry to hear you are in pain. Is it from the TACE procedure? I have heard that CA takes a lot longer to get a transplant. Are you going to a doctor at a transplant facility? I remember hearing that is very important. I can understand the fear, believe me. I get afraid when my thinking is foggy and then realize I am not drinking enough water or eating the right things. So, then I push it all and improve. If you are in pain you should take what ever the doctor thinks is ok. Every doctor is different though so it will vary. I am praying for you Kat and I know Karen is too. She is reading comments even if not replying as she gets very tired.
Thank you for keeping in touch and for writing to Linda, it is so nice of you! HUGS, Dee
4/21/15
Thank you all for your response. Kat, I am also sorry you are in pain. Please let us know how you are doing & hope all is well. Thinking about you.
Any news on Karen. Hope she is doing well.
I am at work, but on my breaks or Lunch I come on this site & you all make me feel better
Please keep me updated & will come back around 4:00 to see if there is any news on Karen & please Kat let us know how your doing. Concerned about everyone.
Hugs to all. Linda.
Hi there, I just came on and see that Karen has posted, I am so very happy to see her https://www.ihelpc.com/post-liver-transplant-protein-and-healing/
I thought you might like to go there as well. Sorry I am late getting on line today. I had company 🙂
Karen ‘& Dee. What a difference a day or two makes. Feeling much better. I am with Dr Frenette at Scripps in Torrey Pines. Dr Paul Pockros had been my hepatoligist for the past 15 years. Praying for good outcome on my MRI. Waiting games are the most difficult to deal with but continue to savor each new day.
Karen, I see on Facebook how well You are. doing. Must have been perfect timing. Curious as to your meld score pre transplant. Praying daily.
Dee, are you taking Lactulose or xifaxin? It does get scary and frustrating when we can’t think straight. How are you doing?
Hope I have not gone too far off on Karen’s recovery thread. This is to keep everyone posted about her progress. :). :).
Xoxo Kat
Hey there! You are doing well, I see Karen posted so wanted to give you her post so you could read it
https://www.ihelpc.com/post-liver-transplant-protein-and-healing/
I think my problem is just stress. I am glad that you are with a good hepatologist. That is great.
More soon 🙂
4/21/15
I am glad to see Karen is doing well. I wish I were optimistic. Maybe I have to move out of California. Anyway Karen you be well always thinking about you, my prayers are always with you.
Linda.
4/23/15
Good morning. Just checking in to see how Karen is. Hope you are doing well. Will be back later to see if there are any more updates.
Have a Wonderful & Bright Day.
Linda.
Hi Linda, thanks so much for checking in. I am working on some things so have not been on line today, bless you for checking in. Dee
Hi Linda, I think that I sent you yesterday’s post from Karen titled Post Transplant, if not please let me know I will send the link
Here is a link to how it all started for Karen. There are others I can share with you and will after my meeting. Hang in there girlfriend. I know I say that alot, that is just me emphasizing it. I have some positive thoughts and hugs coming your way.
https://www.ihelpc.com/about-2/my-story-of-hepatitis-c/
Here is one that is titled “I don’t want a Transplant”
https://www.ihelpc.com/i-dont-want-a-liver-transplant/
4/24/15
Dee:
Any word on Karen. Hope she is doing o.k. Let me know if you hear anything.
Thank you.
Hi there, I thought I updated, sorry about that.
4/24 It doesn’t seem possible that Karen had her surgery just about 11 days ago. I spoke to her this morning. She is trying to rest as much as she can or I should say as much as her wonderful friends can get her to rest LOL She sounds good, strong. Her doctor said she is doing well , her sutures look wonderful however she needs to remember to rest.
Karen darling, I am totally amazed by your strength, and courage. You look radiant my dear Warrior friend… love and much respect to you, one day at the time Mckenzie
good morning karen,
well wishes from australia xo robyn
Good Morning to you, it is a beautiful day here, how about yours?
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