I was diagnosed with hepatitis B in December 1969. About 25% of people with hepatitis B become chronic carriers, and a smaller percentage of those develop severe liver disease -- cirrhosis. So I'm one of the rare ones. From this smaller group, some may develop liver cancer.
I've had HIV since 1987. I know that because I tested negative the year before.
Three years after going on disability my doctor told me I needed a liver transplant. A year later I was put on a transplant list. In 2001, Larry Kramer had gotten a transplant [as a result of hepatitis B]. He and other patients opened the door for transplants in people with HIV.
Last year I decided to seek a second opinion, so I contacted the University of Pittsburgh Medical Center. The decision to go to a second center is your choice. You can get a second opinion as to the severity of your condition. There's a numerical score, the Model for End-Stage Liver Disease -- MELD. It's objective, the higher your score, the more critical you are. Forty is the highest. At the first center [Northwestern], I was 19, and I'm now 24. At the second center [University of Pittsburgh], I had no score. They determined that I didn't meet their criteria.
So now we just wait ... for my condition to worsen.
Those were bad years for me. I was a mess. I had two liters of water taken out of me when I got the acites [abdominal swelling due to an accumulation of fluid caused by the obstruction of blood flow through the liver].
With the encephalopathy, you become confused and the simplest thing to do becomes difficult. With encephalopathy you become like a child.
I've come close to dying several times. A friend of mine says, "My God! He's just like the phoenix! Like the phoenix, he rises from the ashes."
I recently found out through an MRI [magnetic resonance image, a procedure similar to an X-ray] that a lesion in my liver has grown from .8 cm to 1.8 cm. As a result, I will be getting a liver biopsy and bone scan to check for possible signs or spread of cancer.
In December 2000 I got a stent from my portal vein to my hepatic vein, what's called the TIPS procedure [transjugular intrahepatic portosystemic shunt]. All our blood goes through our liver, so this allows a lot of my blood to bypass my liver so that it doesn't have to work as hard. I don't feel it. Normally they do a TIPS procedure as a last step before a transplant. You can have this for five or more years before you need a transplant. I've had it for four.
The past couple of years have been good. I was on a rollercoaster, but now I'm looking forward to the future. Two years ago I was planning my funeral -- getting my will done, finding a place to be buried and leaving instructions for my wake -- that was my state of mind.
With my conditions came added stress and basically a change in life. I often find myself in a position of being "not in control" of my life due to having lots of questions and having no answers, and trying to have a positive outlook in life.
It's taken two years to accept the idea that maybe there is more time for me. And if there is, why don't I enjoy it, while I can. Still, you always have in the back of your mind the idea that one day it's not going to be as good as it is today. But I guess you can say that about anything.
Now I'm in a position of wanting to live. Not that I didn't want to live before, but I'm less fearful, I guess, of waiting for the inevitable. I decided, "Well, I may as well enjoy life and enjoy those around me, my family and friends." That's why I like coming here [to Test Positive Aware Network], because of the good atmosphere.
There's a support group [in Chicago] for straight people waiting for a transplant and one for people with hepatitis C who are in recovery. I started a support group because I wanted to talk with someone about coinfection and transplants. Maybe they have questions too. I wonder, how long have they had coinfection? What experiences are they going through? Do they have difficulties with their meds? That's what I see a support group doing for others -- answering questions.
I know that liver transplantation for HIV patients is very new, however, I felt a need to start addressing new support systems as we continue to live longer.
Now I feel like I want to help others. It's something to look forward to.
George Martinez formed and facilitates HEALTH (HIV Empowerment and Living Together With Hepatitis), which meets Mondays at 7:30 p.m. at Test Positive Aware Network (TPAN). He can be reached at firstname.lastname@example.org.