or I can be reached via…
Twitter message at: @hepatitisihelpc
Facebook Private Messages: ihelpckaren
I look forward to hearing from you! I always try to WBRS, xoxo Karen
(AASLD) The American Association for the Study of Liver Disease creates info and education to support patients. Doctors and medical staff are invested in helping you liver longer stronger with liver disease.
(Global Liver) Donna Cryer is a dear friend who had a liver transplant while finishing her law degree. Her reach goes out to patients, families, medical providers, pharma and on and she’s global.
(Trio-National) Transplant Recipients is your one stop shop for information for ANY type of transplant candidates, recipients, their families and the families of organ and tissue donors. Lorrinda Gray Davis is the President.
(Trio – Oklahoma) This is Oklahoma’s chapter founded by Lorrinda Gray Davis. I’m the founding VP to our current president Benjamin Babb. For anyone needing support for solid organ, tissue, or eye transplant, we’ve got your back. We’ll truly be your best friend.
(Fatty Liver Foundation) was founded by Wayne Eskeridge to improve the diagnosis, treatment & support of Americans with fatty liver, NAFLD or NASH through awareness, education, screening and patient advocacy.
(Sober Liver Survival) founded by Jenn Leigh Jones is everything you need for sobriety, recovery, PTSD, breaking cycles of addiction and victims of personal violence. She’s just getting SLS off the ground and would love to connect with other people battling alcoholism.
(Say Yes to Hope) Suzanne Lindley is a hope dealer to cancer patients. If you need a fri
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30 thoughts on “Contact Me”
Hello,
I came across your site doing a google search and was very impressed with the support you offer to those with hepatitis C . I was wondering if I could potentially contribute by writing a guest post for your site’s blog on the process of applying for Social Security Disability with hepatitis C?
I am a writer for the Social Security Disability Help Blog and know how difficult and confusing it can be to get approved for benefits. By writing an article, I might be able to erase some of the confusion surrounding the social security disability program.
Please let me know if you think an article would help any of your readers and I would be happy to send over a draft for your review.
Thank you for your time and consideration,
Ram Meyyappan
Social Security Disability Help
Please send me an email at ram@ssd-help.org if you would like me to send a draft for your review.
Thanks,
Ram
Paula, You will love this protein shake then. I haven’t gone in to look at the results. I wanted to wait until after midnight on Labor Day! Thank you for entering and just for stopping by my site!
xoxo Karen:)
Karen, Love love love your sight and the associated blogs. Information is power, as is compassion. Screwed up the “confirmation email” right off the bat; could you somehow fix this, send me another one, and I promise to be more careful. Thanks so much for maybe doing this, AND for everything I’ve found already on your sight. Pam
What a great wake up message! I love your line: Information is power! Everything in life requires us to keep learning in order to achieve our goals. For those who are best friends here, our goal is to live. Pretty Darn important stuff we’re doing!
I hope you are well and having a great weekend. If you need anything, well .. you know. Really, anything at all.. let me know. xoxo Karen:)
P.S. and I’ll figure out how to fix the subscribe!
Ram, Thank you for offering! There are many people who are not able to work any longer due to their struggle with Hepatitis C. Social Security Disability is a lengthy process and not easy to do for someone who needs it the most.
That is one are that I have not written about. I think it is because there is still some anxiety that I will not be able to teach. Every year I think of social security.
I responded to your email, but not here. Sorry for the delay.
xo Karen:)
Great site, but Im surprised you are not reflecting the petition that went to the White House asking the president to mandate that production of the combination that proved to cure for hep , but was road blocked by 2 pharmaceutical companies whose products when combined proved to cure the virus IN 2 WEEKS. Pls post so more activism can be promoted.
Thanks, Sister Vic
Thank you Sister Vic! I signed the petition. This site was started right after my own 6 months SVR. I surely hate the thought of anyone being denied treatment. I was denied initially and had to work hard to get my MELD down and treat with a transplant doctor. While the debate about protease inhibitors went on, I was grateful that FDA approval hit when it did. I wouldn’t be here today without them.
Oddly enough, my mom was given a synthetic estrogen called DES while she was pregnant with me that caused me to have birth defects like one kidney missing, and other problems also.
I for one appreciate the system of clinical trials, however faulty they might be. DES would not have been given to my mother and millions of others worldwide if today’s standards were in place.
I am sure there is a lot that I do not understand about the pharma companies, politics, and FDA approval of meds. I tend to link with other sites for a lot of news, research, and awareness and just focus on the support and encouragement.
I do sympathize greatly with those who are waiting. Thank you for bringing attention to it here on the Best Friend’s Guide. xo Karen:)
I started treatment on Jan 15 2014. I have no support system and feel even my doctors are lacking in information on how the treatment is affecting me. It is very scary. I am so happy to have found your site….Thank you for being here.
Jill,
We all come online looking for support. I’ve been in your shoes hunnyo. It feels dreadful now, but you WILL survive this. I am wondering what treatment you are on. Is it the new drugs? How many weeks. I hope we can stay connected. I’ve got some great friends who can also support you. I am usually working, but snow days have me home today.
Much much love and do not feel alone. Fear is normal. We all experience it and fighting that fear will make you stronger. In the meantime, feel loved and private message me!!
xo Karen:)
Hello Jill,
I just found this site. I hope your treatment is going well and you have found some support with people like Karen.
Good Morning Chrissy and Jill!
I’m glad we hooked up! It is good to know – on days when we are feeling overwhelmed with physical problems – that there are others out there beating the virus and living the life!
All my best to you!
Karen:)
Hello Karen,
You have been a GOD send. My husband was diagnosed with HepC a while ago and we were in complete denial. We finally decided to go on the drug therapy but his quality of life was not there any longer. We decided to go off the therapy and we were just going to take each day as it comes. My husband talked to someone who has suffered the same as he has, bloated stomach, swollen legs and discoloration of the skin. He mentioned he started to juicing so I have been on the internet for the last few days looking for answers.
My husband has really never eaten “greens” before (rabbit food as he calls it) but he has decided if this will give him one more day with me and to see our grandchildren grew up, he is willing to do what it takes.
I will let you know how things are going. He has suffered headaches this weekend, as I know that is from sugar withdrawals. He actually drank the CAB juice. I am so PROUD of him.
I apologize for this lengthily post but I have had no one to express what I have been going through.
Thank you,
Joanne
Joanne,
THank you for your kind words. I hope your husband is enjoying improved health with the new diet. Any kind of major changes are so darn hard! If you are sticking with the carrots, they do contain a lot of sugar and will ease the withdrawl. The sugar is a slower and more sustained release so he will adjust and actually feel better once the headaches subside.
Men sometimes have a hard time making the adjustment to the rabbit food. His love for you and the grandkids are a great motivator to make the leap. My husband is hooked on juices and has even talked of buying a new juicer! It is very heartwarming to see your enthusiasm and willingness to help him heal and live longer.
I hope he is still enjoying the juice. BTW – my grandkids now want me to make juice for them! They think it’s cool. Who knew?
Thanks so much for sharing. Your story is much like many others and we can all be inspired!
xo Karen:)
Hi Karen,
I am Corey Catanese, I work for Zitter Health Insights, a pharmaceutical research company. We have recently launched a new website, YourCareMoments, where we pay patients to share their healthcare experiences through short, periodical surveys. Most participants average $30/month from our surveys. We are interested in sponsoring a post on your website. Please let me know what steps must be taken to get this post published.
Best,
Corey
Karen,
I hope you are doing ok. I think about you daily. You have made a dramatic differrence in my life with Hep C, Cirrohsis, and other health issues. I just read Comfortably Numb. How appropriate and true your words are. After 30+ years of working with this disease it all came apart for me in 2010. I lost my job, my doctor could not find where I was bleeding, my husband was depressed, so he spent more money. Once they did find the esophageal varices they did so many EGDs that I lost my singing voice. I loved to sing in church and give my gift of my voice as my message to others. That seemed devestating. Then it became hard to go due to exhaustion. I tried to keep busy at home and in my husbands classroom. I did a pretty good job, but landed in the hospital again in 2011 and 12. I have stayed clear of it for two years. However, my whole life changed. Problems with severe anemia kept me home all week and I slept or watched TV. I did not even read. I would not shower until about 1:00 and then would do a few chores. I did not go into the classroom. It seemed no one wanted to listen to me in GI. Just take iron pills. They were not helping. I had a couple transfusions to get me by. My husband just thought I did not want to be with him because I slept so much and did not go to school. I became comfortably numb just staying home alone. I would not even call people and no one called or visited me. I have always been a positive half full person and I felt I was still positive, but unable to do things. As you know, in Spring of 2014 my father died ( I stayed at his home in Oregon to be with him the final two weeks) and then five weeks later my son died. My heart died. A giant hole that cannot be filled was the result of his death. My husband, who is a half empty person and suffers from depression could not handle it. Even though Rick was his step son, his way of dealing with his death was to not talk about it. Just last Friday on the sixth month after his death, he would not even look at a picture. This is so hard for me. I cannot cry in front of him. He tells me to stop. My pain and illness is something he does not accept. He knows I have it, and he is there for me in the emergency room and hospital (because he feels he has to be), but he would rather go on being comfortably numb and not thinking of it. Some days are so hard. Recently, they found a brain aneurysm that is in a spot that cannot be operated on. Well, just another thing to deal with. I have learned to not dwell on my illness and take what comes my way. I still have problems doing things, but they finally found what was causing the anemia this time and the EGD was successful. I am still waiting for my iron to build back up. Meanwhile, out of all the trials that have come my way the biggest one is the depression my husband suffers. I love him and adore him. I would never leave him. I am just searching for how to cope with it. I just needed to write and I thank you and friends for listening. Tonight he told me he did not want to live and that I would be better off without him. School and the new common core and the inconsistant DO are driving him into a hole. I am going with him tomorrow, even though I am not very strong, but he asked and said, ” I don’t know what you will do, I just need you there”. Then it dawned on me, if we have people who need us, we are whole people. Not just a lump of illness. But, a person who can still give. Leaving the comfortable numbness and madness behind. Thanks for your wonderful words of wisdom.
Sheila
Sweet Lovey YOU!
So much to say sis. We start out in life with so many starry eyed dreams. It is earth shattering when we find ourselves penned in with persoanl struggles. I read every word of your comment. When we write out of our deepest feelings of honesty and pain, we can begin to see the big picture of what we are really living for.
I love how you keep searching. You keep looking within. You see the silver lining where others see only the sadness. We’re slowly waking up, aren’t we dear friend. I love having you as a fellow traveler on this journey.
Much much love,
xo Hugs, Karen
I sent you an email but just in case I will copy and paste here:
I just ran across your web site as I was googling about Cirrhosis. My Dr has said I’m on the verge of the disease (due to the bad kind of fatty liver disease) but the liver biopsy report included the words, “marked steatosis and lobular inflammatory activity consistent with steatohepatitis. Portal bridging fibrosis (stage 3 of 4)”. It sounds to me like I have it and am in stage 3. Does it seem like that to you? I haven’t had too many symptoms and because I’ve had genetic iron overload (Hemochromatosis) the elevated liver enzymes were blamed on that. The biopsy showed I have no iron in my liver but I do have fatty liver disease and portal hypertension per scan results.
Today I bought supplements like milk thistle and some low salt food. I’m overweight but am losing it since most of the food I like is poisonous to my liver! It was sobering when I read online that stage 3 means you have on average 15 years to live. I would be 66 then (51 now) with a husband and two wonderful adult children. My mom died of ALS at 58 so I’ve always been worried about that disease or my Hemochromatosis. Cirrhosis wasn’t really on my radar at all since I have been so faithful giving blood to keep my iron levels low. Now I’ve been slightly anemic for the last nine months but am not aware of any bleeding.
I haven’t told everyone about the Cirrhosis yet but my husband says I have pre-cirrhosis according to the Dr. He thinks there must be stages of getting the disease then stages after you have the disease. I’m hoping he’s right but I have my doubts. A nurse friend who works in Endoscopy asked if I’d had a discussion with the Dr about a liver transplant. Totally blew my mind! I said no it’s not that bad but now I wonder if it is.
Thanks for your web site. I’ve read mostly medical info about Cirrhosis but I needed to know that a person can live with it.
Lisa
Lisa,
Your story is so compelling because I heard the same type of sadness that I first experienced when I found out I had liver disease. Hi Lisa, i’m so sorry to hear about your diagnosis. It sounds like you definitely have stage III moving into stage four. The good news is that you been under some medical care and have taking care of the iron overload.
It is so frightening at first that everything in your world seems to go crazy and you think that you don’t have very long to live. I was 52 when I was diagnosed and have a beautiful daughter and two granddaughters and wondered if I would be able to watch them grow up. Like you I was scared of eating. LOL
At first everything seemed like a threat to me. The portal hypertension, the varices, trying to eat right, even the thought of living through a transplant all seems so foreign to me. I think it was shock, don’t you? It sounds like that’s where you are right now.
Think about it in the terms of the stages of grief because what you’re experiencing is a loss. Loss of the health that you thought that you had. Girl – let me comfort you! This is not, I repeat NOT a death sentence.
For example right now I’m on a liver transplant list. And now it seems like such a wonderful place to be and it feels fairly safe to me to know that I can live another 20 years! At one time the thought of a transplant terrified me!
I think it’s really cool that you’re researching. I did the same thing. There was a lot of lack of information when I first started researching. That’s because I was mainly researching hepatitis C. I didn’t understand at that time that all liver diseases liver disease and it doesn’t matter what caused it.
I’m so glad that you found the site. I just know you are going to break that painful connection with your mom’s death and begin to see your life from a new perspective. The reason I blog is to hopefully be that voice in the middle the night for someone who’s trying to absorb all the new information. My heart is with you tonight.
If you have any questions or concerns please let me know. I do try to answer all emails and comments but the blog has really grown and I’m not able to even read them all every day. Good luck to you and please stay in touch.
Love, xoxo Karen:)
I recently completed my 5th round of treatment and FINALLY am rid of this Hep C (will know if sustained mid January ‘015) I have stage 4 cirrhosis along with the accompanying side effects also encephalitis (encephalopathy?) My question is should I notify SSD (been receiving since ’07) I still don’t have the energy or brain power that I did even 4 years ago and, according to my GI won’t ever. The actual virus is undetectable as of October ’14 but I’m still not able to support myself. Just unclear as to what I should do. Would like to try to work at least part-time but get so tired some days I literally sleep until nearly bedtime
First of all, CONGRATS on getting rid of the HCV! After 5 treatments, You’ve finally done it! Keep getting rest and letting your body heal.
I hear you about the brain power, Lori. It’s a personal call, but it sounds like to me that you still need to be off work. I just started working a few hours a month to help subsidize my insurance. It’s hard. I did find out that I can earn a certain amount every month and still keep SSDI. (It’s different for everyone). Luckily, my boss is letting me work from home and only spend a few hours at work when I’m having a good day.
It would be great if you could find something like that. But honestly? I would NOT risk losing your medicaid or SSDI. You’ve got to take care of yourself.
Once again, Congrats and thanks so much for comming by. Keep me posted on how it goes. I hope 2015 is your best year ever – Hep C free!
xo Karen:)
Sorry, meant WHEN should I notify SSDI?
I don’t think you have to notify them. You have ESLD and that is cause enough to keep your medical and disability benefits! xo
Lori, I hope you don’t mind me butting in. You don’t have to notify them, you are still sick. You should rest, recuperate. The tx is very difficult and it takes time to recover. I hope you feel better soon. Hang in there
D
Hi, I just purchased your book a couple of days ago. First, let me say, WOW!! I am loving this book!! As a caretaker it has really helped me get inside the mind of a patient, but I can’t wait to get my sister healthy enough to read it herself because I know it will help her to feel connected to someone who has gone through the same emotions, fears, and uncertainties as she is now, and the fact that you overcame it all will give her new hope! Thank you for sharing such an in depth view!
In the book, on page 70 and 71, for some reason they are completely blacked out. It’s the section on protein and I really need to learn more about this. Is there a way to get a copy of these two pages emailed to me? Thanks!!
Rachel,
This feedback from a caregiver gives me tears. What a sweet, dear, sister you are. I’m sending her all the love in my heart since I read this. I hope you got the copy in your email. Makes me wonder about page 70 and 71 for other readers.. hmmm. Anyone else out there?
All my best to your sis. Let me know if I can be of any help. Be sure and take care of yourself through this process, OK?
Much love, Karen
Karen,
I purchased your book May 26, 2018 because my life partner has liver disease also. I have not received the book by mail .
Did I miss understood I would receive it by mail ?
I thank you for helping so many others with this condition.
Dear friend,
I emailed you and hope that you were able to get the book. I had a couple of errors that week where people were not able to get the book. Sometimes the email address from PayPal bounces back.
Please respond if it was not worked out.
xo Karen
I am unable to download the book? What do I do????
Were you able to get my email. Sometimes they bounce back to me. Please let me know at ihelpc.com on my gmail account. I can help fix it.
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