 Waiting
For a Transplant—One Man’s Story
by George S. Martinez, as told to Enid Vázquez
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.
Disability
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.
Near death
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.”
Today
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.
Support groups
Having a support group for people who
are co-infected 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 co-infection
and transplants. Maybe they have questions too. I wonder,
how long have they had co-infection? 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 aztec5545@aol.com.
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