Waiting for a Transplant: One Man's Story
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.
My hepatitis has been monitored on a regular basis. In 1999 my liver enzymes were elevated and I was diagnosed with cirrhosis. I went on disability as a result, that and my high [HIV] viral load. Later that year I was also diagnosed with AIDS.
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.
The Transplant List
I've been on the list now for one year. I'm monitored quarterly by the Kovlar Transplant Center and the HIV clinic at Northwestern Memorial Hospital.
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.
In 2000 to 2001, I had encephalopathy [any of various diseases that affect the functioning of the brain]. I had acites -- water retention, with weight loss from loss of muscle mass. I was constantly tired, depressed, lacking an appetite and suffering with neuropathy.
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."
My health is good. My viral load is undetectable. My CD4 was 179, but the latest count is 129. They prefer it to be 200 and above. It's been three or four years since I've had 200 T-cells.
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.
Having a support group for people who are coinfected is important to me because when I was put on the transplant list, I became aware of the gravity of my situation. I not only have HIV, but I'm battling with liver disease, which ultimately could kill me, and be even worse than HIV.
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 email@example.com.
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