Thursday, April 22, 2010

Stay in the Fight.. Don’t Give Up on your Liver!! Summer's Story

HCV and Cirrhosis have been the main focus of my life. In l980 my mother was diagnosed with cirrhosis of the liver. In the early 90”s they informed her that they had found a new strain of Hepatitis; it was called “C”. They gave her interferon for a time, but it made her so sick she didn’t want to take it anymore. I only wish that we would have understood what the outcome could bring by not treating this. In 2004, my mother died of liver cancer. I stayed with her for two years, watching her slowing deteriorate. She had two surgeries; trying to remove the cancer, but it was too late, it had spread. This was the most painful time in my life, seeing the mother I have, that was always so full of life and extremely active, die in this way. Needless to say I was so depressed, couldn’t get out of bed. Finally went to the doctor for my depression, and was informed that I had Hep C since 2002. They had over looked the test results. Talk about a BLOW! Losing my mother, then my other love, (my dog) and finding out I had Hep C, geno 1, all in the same month, sent me into the gloom of life. I told no one. Kept all my pain inside. The doctor told me that I needed to look into treatment, NOW! Of course, every doctor I went to irritated me because of, what seemed to be their lack of knowledge of the virus. One hospital said that they would treat me in a study, (of course, I wanted no part of being a lab rat). Anger was taking over my judgment, of what was real. I just wanted it to go away. Mentally knowing I had this and the thought of the same thing happening to me as did my mother, took me back to the doctor. This was 2007. I went to a Gastro doctor, he put me on SOC. He also told me that he had not treated many with HCV. Another, “OH BOY” moment. I went ahead and started the SOC, with a good attitude, that I would get through this and not let myself feel bad. Well….I gave it a good fight. After getting started, he checked me at 6wks; I had over a 2 log drop. So I continued. At the 24 wk point, checked again, and was back up to 2 million. He kept me on the meds for the full 48wks. At the end, he shook my hand and said,” sorry, maybe within the next 5 years they will have a new treatment”. I was a non responder. I found out through my brother the next week that his boss had gone into clinical trial study. He had just got the results of his 6 month post tx. He was SVR!!! I immediately emailed the study, (my luck had changed). I had gotten an email back just after I sent it. They wanted me to send all paperwork. They accepted me into the boceprevir study. I was at ND, by wk 12, and stayed that way through the 48 wks. The side effects were a little more intense this time around. I wasn’t sure if it was because only a month before I had just went though 48 wks of SOC, now back in the fight, or if it was because of the boceprevir. The fatigue, of course, was there pretty much all of the time. I also developed anemia. They had me on procrit shots, average, once a week. Finding out now, I was lucky in that respect too. I also had to take Neupogen, twice weekly for the last 3 months of the tx. All was do able though. I did loose about 60% of my hair. I’m now at 3 wks post tx and waiting for my results of my 4 wk post labs. I have a great feeling about this. I know that there is a chance that I could be disappointed, but so far I feel very positive. I would tell anyone that they should never give up, stay in the fight, the best way you can. Don’t give up on your liver. What this virus can do to it is nothing nice.

My thoughts and well wishes are for all that are fighting, or know someone fighting this battle.


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