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
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3 comments:
Jay,
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.
-beaux
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.
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.
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