Saturday, August 10, 2013

Treatment... Again

Friday's clinic appointment went pretty well. I left feeling much better than I did after my July appointment. Mostly because I had taken River with me to that one, but hearing that they wanted me to treat my Hepatitis C (again) sooner rather than later, was also quite nerve-wracking. After River asked my doctor what "rank" he was in the hospital, explained military ranks to him, and informed him of his rigorous exercise routine with his dads 4 pound weight and stress ball, my doctor was finally able to talk to me more about my April biopsy results. Bridging fibrosis is basically the last stage before cirrhosis, and it took my newest little liver less than 2 years to get to this point. Not good. "But we're not giving up yet!" He said. They have some new interferon-free clinical trials coming out, and they want to get me in on one. So much for being "warehoused" for a while. This is good though. If I can get rid of this freaking disease, I could easily have a few decades left with this little liver. I am trying not to think about the things that could go wrong. It didn't help that I didn't have any details, so my mind was free to think up all kinds of horrible side effects (like zombieism, and shady clinical trials) until yesterday. It was definitely better than I had thought. There will be no interferon injections with this trial. (Interferon is a form of chemo, and my last 3 attempts to treat had it. No fun.) This will be 3 pills, it is only 12 to 24 weeks, (instead of 12 months) and it is called... ABT-450/r/ABT-267, ABT-333, and Ribavirin. My first order of business when I enter the trial, will be to change the names. The side effects seem like the usual suspects. Nausea, vomiting, fatigue, and headaches. But (for the test subjects pre-transplant) the side effects were manageable. The most difficult part is going to be getting to my appointments (hopefully). They only have studies in certain states, and the closest one to me is in Phoenix, Arizona. They have one in Barcelona, Spain too, but supposedly they won't pay for me to get there either. Hehe. I couldn't find too much more information on-line, but I think I read that it had an over 90% success rate so far. I can't even imagine what it feels like to be completely healthy. Not that I've been letting my achy bones and tired body get in the way of anything.
This summer was a busy one (well, I'm probably the only one who thinks that in this home). We went the beach, Knotts Berry Farm, California Adventure, the California science center to see the endeavour; we saw fireworks, and celebrated birthdays with family and friends. I had my two liverversaries, our 11th wedding anniversary, and at the end of July, we went on our first annual camping trip with the Albertoni clan. I haven't had that much fun in a long time! I also did my first Donate Life assignment at the Liver Life Walk in July. It was awesome sharing my story with people who had no idea what "Donate life" even was. I have my eCampaign up (here), and today I went to the 2013 ambassadors conference. I am feeling inspired! It is amazing what my two donors have given to me. Even if I don't get decades left, I am so grateful for every extra day I have had with my family and friends!
I hope you are all having (or had) a great summer! River starts second grade on Monday. :-/

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