I Have What?!
I was feeling fatigued and getting headaches. I never get headaches, so I started to wonder what the hell was going on.
Being a man in recovery, it’s not strange that I knew plenty of people with Hepatitis C. In fact, I was dating a girl who had it. My level of caution in the bedroom could leave something to be desired. So, I was a bit concerned, enough to get tested.
I got a call later that week. “We got your results back, you’ll have to speak with the doctor.” My heart started sinking. You always know its bad news when they don’t just tell you but say “you have to speak with the Dr.” So, I called the doctor and sure enough, “Your test results came back positive for Hep C.” There we go, my heart sank.
Two years into sobriety and I find out I have HCV! What the hell, I thought I was in the clear! Turns out I wasn’t. It also turns out that I should have been tested six months after I got sober, which I never did. I’ll probably never know where I got Hep C from. I was an IV drug user, was it that? Did I have it the whole time? Did I get it from my girlfriend? I guess it’s not really important.
Sitting on My Pity-Pot
There I sat in my car, shocked that I had a chronic liver disease. A chronic liver disease I had to tell my sexual partners about, past present and future. A chronic liver disease I could spread to others. A chronic liver disease that could eventually kill me. My bullet-dodging days where over. Where had all my positivity gone? I just found out I have Hep C. Game over. No one will want to be with me. Everyone will assume I’m a needle junkie, I’m gross, and my blood is toxic.
This kind of thinking wasn’t going to help me at all. I thought I better deal with this. I remembered from others experiences that there was a way out. There was hope.
Fortunately, I’d done enough work on myself to realize that if I approached this situation in a positive light, and took immediate and aggressive action, I’d be just fine. My experience in sobriety had shown me that whenever I was faced with a challenge, if I just walked through the fear, I’d come out the other side as a stronger person. The greater the fear, the stronger I became. I knew there was a cure for most people. I also knew going through the medication process was grueling and sometimes unsuccessful.
I got off my pity-pot and started taking immediate action! I started researching everything I could about HCV – how to seek treatment, what treatments where most promising, how to approach doctors, and what questions to ask. The first thing I had to do was gather copies of all my medical records and testing information. I couldn’t take no for an answer in acquiring these and I wouldn’t take no.
I found a gastroenterologist (a digestive track and liver specialist), set up an appointment, and prepared a long list of questions. I went in prepared. My iPhone recorder was running for my review later on. On my visit, I learned a few things, one of which was that south Florida just so happens to be a leader in Hepatitis C research! I probably couldn’t be living in a better place in the world to get treated for this. I also learned there were new and exciting breakthroughs in treatment, breakthroughs that could prove to be more effective and less grueling.
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New Types of Hep C Treatment
The doctor wanted me to get a liver biopsy, something I wasn’t so sure was necessary. He also wanted to send me down to a specialist in Miami. He thought I might qualify for a clinical trial. So, down to the University of Miami I went.
I found out I hadn’t been sober long enough to qualify for any of their trials, which almost brought me to tears. Remember, I’d promised myself not to take no for an answer.
I asked for phone numbers to other doctors running trials. I got the numbers and started dialing. This led me to the South Florida Center for Gastroenterology, who had a trial I was a perfect candidate for!
It was for those with Genotype 1 being treated for the first time. The medications didn’t include the dreaded Interferon, had very few side effects, lasted only three months, and was 98% effective in eradicating this thing that was slowly destroying my liver. Now came the hard part, waiting for the call about whether I’d been accepted to the trial. They said it could be weeks, months, even a year! They also said my chances of getting into the next trial were promising because I had ALL of my test results and paper work and I’d already gotten that liver biopsy I was so against getting. Sure enough, I got the phone call within a few weeks to come in and get started on the medication.
The trial was being held up at the South Florida Center for Gastroenterology in Wellington. It’s my understanding they have trials all the time. I went in and they were very friendly. They explained how I’d be put on a combination of the drugs ABT-450/r/ABT-267, ABT-333, and Ribavirin. I would be on the medication for three months.
The trial went smoothly. I had to go in for regular check ups and to get my blood drawn. Finally, the three months were up and the verdict was in. The virus had been cleared, eradicated, destroyed. It was amazing news.
I got another checkup six months later and the same news made it official. I was considered cured! I didn’t have to worry about it anymore!
Hope for Everyone with Hep C
It’s funny in a way. I might have gotten Hep C as a result of my addiction, certainly as the result of someone’s addiction, but I was only able to deal with having it as a result of my sobriety. If I hadn’t been in such a good place spiritually, the news would have been devastating. I easily could have drowned my sorrows with drugs and alcohol, which would have made me unqualified for any trials, and would have damaged my liver even more.
Instead, I was in a position where I quickly accepted the news and worked hard to deal with the situation. Just like my program, I took it one step at a time. I took suggestions, walked through the fear, and came out the other side free of Hepatitis C.
My story might not be like others. Some have stories of very difficult, even unsuccessful, treatments. Some might have a type of Hep C that doesn’t work with the medication I took. The point of sharing my experience is to spread the idea that there’s hope, there’s help, and that you’re not alone.
For many of you, there’s a way out, a way that doesn’t require six to twelve months of uncomfortable sickness, hair falling out, and constant fatigue. You just have to take the action to find it and don’t take no for an answer.
For more information on possible trials and treatment I suggest contacting the South Florida Center for Gastroenterology. They saved my life.
South Florida Center for Gastroenterology
Dr. Jane Wall
(561) 798-2425 Ext: 6
And remember, don’t give up until you get what you need.
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