HCV positive from PA

jmundale

Just finished two years of interferon therapy for type C hepatitus. I did not respond, so I am most likely facing a liver transplant in the future. To improve my chances for selection and recovery, I am loosing 50 lbs through diet and exercise. I've already lost 30, and I've 20 more to go to reach my target of 195lbs. I've found this site to be an immense help with the calorie counting. Due to my high level of physical activity, I've always been able to eat whatever I wanted. After getting sick I was unable to sustain my activity levels and I quickly gained weight. I feel better now but still cannot control my weight with exercise alone.

jmundale

Just finished two years of interferon therapy for type C hepatitus. I did not respond, so I am most likely facing a liver transplant in the future. To improve my chances for selection and recovery, I am loosing 50 lbs through diet and exercise. I've already lost 30, and I've 20 more to go to reach my target of 195lbs. I've found this site to be an immense help with the calorie counting. Due to my high level of physical activity, I've always been able to eat whatever I wanted. After getting sick I was unable to sustain my activity levels and I quickly gained weight. I feel better now but still cannot control my weight with exercise alone.

Healthier_Me

Hi jmundale!

You have done an awesome job so far with the 30 pound weight loss.
This site will definitely help you lose the next 20.

I wish you all the best in your journey

~Joanna

julieofthewolves

Hi Jmundale:

I am so sorry to hear about your Hep C and that the interferon didn't work for you. My mom has had Hep C for at least 20 years and thankfully it has not destroyed her liver too much, that is until recently. She just started interferon Rx. But it seems to be going well so far.

I hope you have success in finding a good match for your liver and that your body adjusts well. You're doing great for yourself getting in physical shape for such a surgery. All the best, Juile

cmriverside

jmundale,

I'm so sorry to hear the Interferon didn't work for you. They did give you the combination therapy with the (anti-viral) Ribavirn, right? (For everyone else reading this - Interferon is Chemotherapy - like they give cancer patients.)

I also had HCV. AND I was born in Pennsylvania. Fortunately the combo regimen worked for me. I have been clear of the virus for two years now. But I know it is not the ideal regimen for everyone. It made me miserable every day after the first ten weeks. The Interferon was awful for me - I lost 47 pounds, most of my hair, and I was anemic and therefore exhausted for the duration of the 48 weeks of the regimen, so I also had to go to the hospital twice weekly for monitoring/blood tests/injections of Procrit to keep my blood-count numbers up.

I literally went to work four days a week and slept for a year. When I finished the therapy, I swore I would never do it again, and was told that the second round is worse...is that what you did? You said you were a non-responder: how far in to the treatment did they make that distinction? I was told that if I was a non-responder after the first three months, that I would be pulled off the therapy...so just wondering..

I know there are other drug therapies in the pipeline - I bought stock in a company here in Seattle, Zymogenetics (ticker ZGEN). One of the things they are working on is a gene-therapy for HCV. I hope that you will find the answers, and I think that there may be other options for you down the road a bit. I waited six years after diagnosis to start treatment, because I didn't feel sick, my liver alt stayed stable, and the therapy didn't have a great success rate. When the Pegylated Interferon/Ribavirin combination therapy seemed to be more successful, I felt I the timing was better for a successful outcome. But it is still experimental in some respects.

Of the 47lbs weight I lost, I gained back 37lbs in 18 months. So, that is where I drew a line in the sand. I've lost 14 pounds since August 22, by following the suggestions here. I will be your cheerleader!

Excellent that you are trying to become as healthy as you can by diet and exercise.

Everyone should get tested for HCV. It is an epidemic that we don't talk much about, a virus that lays dormant, multiplying for sometimes decades before any symptoms become detectable. I wasn't sick a day until I started therapy.

I will give you a contact for me in case you want to contact/talk off this site. I am going to type it in without the normal format so it will be difficult to be "phished".

~~~cheryl(dot)dolphin(at)
~~~<google has a mail system> Hope you are catching my drift. ~~~(gmail) (dot) (com)~~~

~Cheryl

P.S. I'd love to hear from anyone that wants to write.

pamelawh

good luck on your goal and your liver transplant.

jmundale

thanks for the postive support. Some answers to the questions below:
I started with weekly injections of PegIntron and daily pills for Ribavarin (combo therapy). I had a reaction where my enzymes went up to high and I stopped therapy after two months. Was referred to John Hopkins hospital and started with weekly Pegasys and ribivarin combo therapy. After 6 months my viral load was still around 40k. Switched to daily injections of Infergen with Ribavarin daily as well. After 8 weeks vial load was undetectable, continued therapy for 48 weeks. 6 weeks after completion my Viral load was 100k. The last year of daily injections was really tough. My weight was all over the chart (up 20 down 20lbs). Depression, fatigue, and insomnia were the worst. I had to work for health insurance as both my wife and I were being treated and our monthy pharmacy bill was around $8000. She had a postive response to treatment.

I am now waiting for new treatment options. In the meantime I am trying herbal treatments which help with my attitude if nothing else. My liver enzymes are only slightly elevated and I am still waiting on my latest viral load result.

My herbal regime consists of Liver Well (Angelica, Patrinia, Phyllanthus, Schizandra, Eclipta) and Not-So-Well ( Andrographis, astragalus, Lonicera Flower) both are products from GetWell international.

kimford28

Hi Jmundale-
Wow! you have been through a lot! I wish you all the best in your journey.
Kimford

cardgrl

Wow! Jmundale and CMriverside, I am so glad you had the guts to talk about what you did! I also have gone through and succeeded with the treatments. I took the peg-intron and ribavarin for a year. I was responding by the first couple weeks of treatment.
I was very upset by the news that I had the virus, so I guess the doc (who, by the way, is ANCIENT) thought I was a loose canon and made an appointment to speak to my therapist. Not only did I found out that I had HCV, I also had the worst type (Type I) that had to be treated the longest of all types and had the lowest success rate. Not to mention, I was doomed to get incredibly sick.
Anyhow, I lost tons of weight and hair, but other than that, I was extremely healthy and my doctor called me his star patient. A year or so later, I am virus free, so i guess I am in the clear now.
This was the only time I had lost a significant amount of weight. I didn't look very good, my skin was hanging off and I looked like hell, but I liked being able to fit into a size 6/8, even though my boyfriend didn't like my saggy skin. I am trying now to lose the weight I have gained back, only in a healthy way. Hats off to you two for your journey. You are very brave!
And Jmundale, keep your chin up! I have a friend who has gone through similar circumstances. He didn't want to take the interferon because he didn't want to miss any of his son's sporting events and activities. He ended up getting so sick that he had to get on the transplant list and he got a transplant in the nick of time and has been doing well ever since!
Welcome and thank you for sharing your story. I never could have shared my story alone. Thank you! Thank you! Thank you!

cmriverside

cardgrl & jmundale,

I "hid" my diagnosis from everyone for five years. No one but my doctor knew. My mother had just died three weeks before my diagnosis: so my family was all shook up about that already. I quit my job to go to help conclude her affairs. So I was on COBRA for insurance when I found out I had HCV. This was in 1999. At that time, I had elevated liver enzymes for YEARS before my doctor decided to check to see if I had one of the Hepatitus viruses. I think they just had no effective treatment. I had been exposed to and cleared both Hep A and Hep B but when they did the RNA test, I was found to have chronic Hep C, Type 1 with a viral load over 400,000. I was devastated as well. All the info on the web at that time was very contradictory, but none of it was very encouraging for treatment.

As I said, I was never sick with the virus, (and I read somewhere that ) "since most people who watch their diet and don't do drugs or drink, will die "with" the disease instead of dying "of " HCV, I didn't choose to do the therapy at that time - plus my insurance was COBRA - a minimum coverage at best for what turned out to be about a $48,000 drug and "procedures" regimen..

I often wonder why they don't tell you -that the sooner you do the treatment, the better off you are. I found out (when I had to do a liver biopsy in '04) that I could have been disqualified from therapy completely if they found a certain percentage of liver damage. I would have preferred that little tidbit about four years earlier, thank you. I now had a job with good insurance and I had proven myself, so I felt I could make it through the therapy and still keep my job. I was clear of the virus in 12 weeks, and it never came back. I then told everyone at work - after HCV was gone. Good thing, too, because right after I told them was when my hair started to fall out - and I was really sick.

Unfortunately, I didn't know how awful the drugs would make me feel. I ended up having to cut my hours to 30 a week - and I still wasn't functioning well. My employers were not very understanding, but they couldn't fire me since I had told them about the HCV and legally you can't fire people because they have it. I had to get my doctor to write a letter describing the effects of the drugs on my body and my ability to do my job.
Still, they didn't make any other accomodations to my "fogginess" and I was doomed. After the therapy, they began to attack every little thing I did. I finally had to quit my job a little over a year after my treatment was through.

Se la vie.

I'm still not working - just because I haven't started to look yet...wow! I am very chatty.

Thanks for sharing your stories.

crdgrl, I'll keep your mother in my thoughts. How is she doing?? How far into the treatment is she?

~cmriverside

cardgrl

Hey, CM. I think it was someone else. I'm the only one in my family so far....