Sunday, February 7, 2010

Deja Vu: I'm Back on Pegylated Interferon and Ribavirin

Hepatitis C is like your shadow - this wicked, stubborn virus is always present, liver transplant or not, dogging at your heals, never really letting up. When docs determined in Nov. 2009 that Hep C was causing my elevated liver enzymes, we all decided that trying treatment again was my best option (my choices were to either try treatment or wait, and I'm not one to wait around). I started Jan. 19 and thus began the journey to discover a new phase of "normal."

When I was treated in 2007 I was still recovering from my transplant and post-transplant complications, so it was tough to tell how the meds affected me. This time, in a more controlled environment (so to speak), it's easier to distinguish the side effects. I'm pretty lucky, in that I haven't experienced anything extreme. My side effects have included chills (no fever, but it feels like my body temperature is awry - my forehead is cool but cheeks and neck are really hot), intermittent headaches, yeast infection and most of all, fatigue. So far, not too bad. I start feeling the impact about 12 hours after my shot.

I've never spoken with anyone in my shoes, who is undergoing treatment post-transplant. If you've been in these shoes, please comment and tell me about your experiences. Or even if you've been treated and haven't had a transplant, I'm interested in what you went through. Do the side effects become worse over time, as the meds build up in your body? Did you lose hair (this is a concern for me). Do you have planning strategies you can share - I have a husband and two teenagers and just keeping us fed is a challenge sometimes.

Photo by Vangelis Thomaidis


Something Happened Somewhere Turning said...


I did the treatment about 3 years before I got listed. I had a fairly easy go of it. The first month or so was the hardest. I got the chills like you say, but I never experienced a real bad fever.
When I first went to the clinic I am at there was talk about doing it again, but I was feeling so miserable at the time I decided that I didn't want to put myself through that kind of treatment right then. My last clinic appointments had me scheduled with a bunch of test: blood labs, bubble echo cardiogram, CT scans and an endoscopy/colonoscopy. My labs showed that my MELD had dropped 3 points and the doctor said that we could be looking at another year or longer before I might be sick enough for a transplant. That got me to thinking that maybe with this new time frame I should probably try the interferon treatment again now that the meds have been holding me in check. I am waiting now for a cancellation so that I can go in and talk about doing the interferon. I am a bit apprehensive, but I figure what better time to do it than now while I have the time.
I really wish you the best with the treatment and I hope you get promising results. I will let you know if I get approval to do the treatment again. I'm pretty sure that my insurance will approve it. I mean...they did it before. I am getting anxious because I would like to try this one more time before transplant.
Take good care of yourself.


Anonymous said...

Jay, I am so glad to have stumbled upon your blog. My father, 42, is going through exactly the same thing you are. I am going to forward this blog to him and hopefully it will give him some comfort to find that he's not alone. I hope that he will tell you about his experiences as well becuase they are so similar to yours. Best wishes to you! Thanks again for sharing your story.

Anonymous said...

I just stumbled across this blog...
I went through a year and a half of interferon and ribiviron treatment post-transplant (when it was 3 shots a week) and it was pretty awful. I was one of the lucky few that actually "cleared" the virus after that course, so they say. In that sense, it was worth it, but it was pretty shitty.
I was on shots to boost my red and white blood cells that were lowered by the treatment. I also had high blood pressure and diabetes from post-transplant complications, as it was pretty soon after my transplant (those have resolved now).
I was on Zoloft because it made me depressed, and I remember feeling so tired all the time. Although all that was awful, I hated the hair loss the most. Not that much hair loss, though, but it happened for me on the sides of my head - when I pull back my hair in a ponytail, it is much thinner on the sides, although I was lucky to have very thick hair to begin with. Although no one really notices, that hair has not fully grown back almost 8 years after finishing the treatment.

I was pretty young (16-17) when all this happened, so I kept busy with school and few activities I had energy for - I guess that's how I coped. Good luck with your treatment, I'm hoping for the best.