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My husband,
then my fiancé, was diagnosed in April 2000 with end stage renal
disease, a complication of juvenile diabetes, and was told he
needed a kidney transplant.
One
of the first questions our nearest transplant center -- St. Barnabas
Medical Center in Livingston, N.J. -- asked was if there were
any potential related donors.
There weren't.
Mike's father (deceased) grew up in an orphanage. His elderly
mother's relatives are in Puerto Rico, and not particularly close.
His only sibling, a sister, had medical problems of her own. He
had two nephews, one 21 and newly married and the other only 12.
I was more
than willing to donate, but we didn't even know if we had compatible
blood types. But an early blood test (part of Mike's workup to
get qualified for the transplant list) showed his blood type was
A positive, which meant I was at least in the running. I'm A negative,
and Rh factor doesn't count in kidney transplants.
When Mike
completed his medical evaluation and was accepted as a transplant
candidate, the center agreed to test me as a potential living
donor.
At 50, I was
pushing the prime age for organ donors, but I was in very good
physical condition with no medical problems. There was a time
when I might have been rejected out of hand for being unrelated
genetically or because of my age. But organs are in short supply,
and the success rate for transplants from healthy older donors
is very good. Most doctors are willing to be a little more liberal
these days in their view of potential donors.
Taking
the Tests
The first
hurdle was a compatibility test. For this, a technician took five
vials of blood from each of us to test for matching antigens and
antibody compatibility. The most critical, the transplant center
told us, was the compatibility test. If Mike's blood reacted to
any antibodies carried in my blood, his body would almost certainly
reject my kidney.
Second in
importance was the antigen match. Transplant centers look for
matches between six antigens carried on human cells -- the higher
the number of matches, the better the chances of success with
a transplant.
Third, the
center wanted to test my blood to determine what viruses I'd been
exposed to -- HIV was critical, of course, but so was hepatitis
in its various forms, Epstein-Barr virus and a common virus called
cytomegalovirus (CMV). The majority of people have been exposed
to CMV as children, by getting chicken pox. To people with a normal
immune system, CMV is no big deal. But if I'd been exposed and
Mike hadn't, he could contract CMV from my kidney -- and CMV can
be deadly in a person whose immune system has been deliberately
crippled to avoid rejection of a transplanted organ.
As it turned
out, Mike's blood did not react negatively to mine, and we both
tested negative for all viruses, including CMV. As a bonus, we
had one matching antigen. That's not as good as a related donor
might have offered, but our transplant coordinators assured us
that anti-rejection medications have improved to the point that
even zero-antigen matches have impressive success rates.
The next hurdle
was to pass an intensive examination of my own health. After getting
a green light on the easy stuff -- medical history, chest X-ray,
EKG, urinalysis -- I moved on to the more detailed tests. First
was a creatinine clearance test, which meant collecting every
drop of urine for 24 hours. That would demonstrate that I had
enough kidney reserve to handle my own needs if I gave one kidney
to Mike. I also needed to show negative results on a Pap smear
and mammogram (if I'd been male, the test would have been a prostate
exam). The doctors don't want to transplant any free-floating
cancer cells to a person who will have no immune system to combat
them.
With the green
light still on, I moved to the last phase: a CT scan of the kidneys.
Seems funny, but at this point the doctors only knew that I had
good kidney function. Some people have great kidney function with
only one kidney -- no health problem for them, but obviously they
can't give their only kidney to someone else.
Some centers
use other testing methods -- such as an arterial angiogram, which
involves threading a catheter into a groin artery -- for this
detailed look at the kidney and its blood vessel connections.
The CT scan that I underwent is less invasive and a lot less scary.
The CT scan involved injecting a tracking chemical through a needle
into a vein in the inside of my elbow -- the same procedure as
taking a blood test, except in this case I "get" instead of "give."
As I lay inside a contraption that looked like a steel doughnut
with a cot in the middle, a machine took pictures of the tracking
chemical moving through my blood vessels and kidneys.
The results:
I had two perfectly normal kidneys, but both had two renal arteries.
In some centers, this would disqualify me from laproscopic surgery
-- a less invasive surgical technique that reduces the pain and
strain on the kidney donor. Each artery and vein that must be
sealed off to extract the kidney introduces a little more surgical
risk and a little more trauma for the kidney. My surgeon was not
fazed by the extra artery, and everything else looked good.
It's
Go for Surgery
I was approved
for the laproscopic procedure, and we were assigned a date for
surgery -- Dec. 12, 2000. That was the tough part -- arranging
time off from work, laying in supplies of food (especially heavy
stuff, because neither of us were supposed to be lifting anything
over 20 pounds for awhile), alerting the family, getting ready
ahead of time for Christmas.
Five days
before the surgery date, we repeated the compatibility test --
just to make sure nothing had changed in the interim. We also
repeated the EKG, urinalysis and chest X-ray -- standard pre-surgical
procedures.
On surgery
day, we reported to St. Barnabas, an hour from our house, at 6
a.m., as instructed. After checking in and waiting for our names
to be called in the waiting room, we got IV ports installed in
the pre-surgery area. Then we waited, joking around with family
members who were allowed into the pre-surgery area.
Shortly after
7 a.m., I was wheeled into surgery, an hour or so before Mike.
As I lay on the surgical table, I turned to watch the attendants
strap my arm to a board to keep it steady for the anesthetics
that would be administered intravenously. That's the last I remember
until I woke up in the recovery room, about five hours later.
I got to see Mike there as they wheeled me past his bed on the
way to my room. Without my glasses, they might as well have been
pointing out Richard Gere. I wouldn't have been able to tell the
difference.
I was moved
to a room on the transplant floor shortly after 4 p.m., and Mike
was sent to the intensive care unit a few hours later. ICU for
new transplant recipients is standard. Anyone who's had surgery
before - especially abdominal surgery - will be familiar with
the routine that follows. There was a period of 12 hours or less
when I was pretty much out of it -- aware of what was going on
but too sleepy to care. I was awake enough to talk to family visitors,
but was not disappointed when they left shortly after 7 p.m.
At midnight,
I was wide awake and dying to get out of bed. I was not in pain
from the surgery, because I was being fed morphine intravenously,
along with fluids. But I'd been flat on my back since 7 a.m.,
and my back hurt. A nurse who'd come to check my blood pressure
helped me stand by the bed for 20 minutes or so.
By the following
afternoon, nurses had removed the morphine pump and the Foley
catheter that had been inserted during surgery, and stopped the
IV. I was told that the main post-surgical pain from a laproscopic
procedure would be residual gas in the abdomen (my belly was pumped
full of carbon dioxide during surgery to give the micro-cameras
a better view and give the surgeon more working space for his
instruments). But the after-effects of this surgery seemed identical
to my only previous experience with abdominal surgery, a gynecological
procedure that involved a conventional incision.
My belly
hurt when I coughed, sneezed, laughed or used the abdominal muscles
in any fashion. Getting out of or into a chair required some fortitude.
Walking up and down the halls was easy; rolling over in bed was
tough. But I never once needed to push the button on my morphine
pump to give myself more than the minimal medication being administered
by drip. In the hospital, I took three pain pills over the course
of a day and a half (after the morphine pump was disconnected),
and I took two more of those pills at home. After that, Tylenol
took care of any discomfort.
I ran a slight
fever after surgery (around 99.5), which is a common reaction
to surgery. It wasn't high enough to keep me from being discharged
Thursday morning, about 48 hours after surgery.
Life
After Donation
The most uncomfortable
problems were short-term constipation, a common reaction to anesthesia,
and, for a couple of weeks, difficulty in finding a comfortable
position to sleep.
Mike came
home two days later, on a Saturday. He experienced no acute rejection
episodes in the hospital, and so far still hasn't (almost nine
months as I write this). His recovery has been blessedly uneventful
-- no infections, no serious drug reactions. So has mine.
I went back
to work in slightly over two weeks. If I had it to do over again,
I might have taken another week, because I did have some residual
fatigue. On the other hand, pushing yourself just a little helps
restore energy levels.
So far as
I know, the surgery has had no adverse effect on my health, but
it would be wrong to assume that it had no effect at all. My blood
pressure is up slightly from 106/60 to 118/65, and my creatinine
rose from 0.7 to 1.1 - both still well within the normal range.
My surgeon
advised me to avoid contact sports (no football, rugby, boxing
or rodeo) to minimize risk to the remaining kidney, and to avoid
the use of ibuprofen-based pain relievers (Advil, Motrin, etc.)
because of concern that they might be capable of kidney damage.
A little research on my own showed that the jury is still out
on other pain relievers, too, so I use Tylenol only sparingly.
Because I have a family history of osteoarthritis and cartilage-related
joint problems, I started taking glucosamine chondroitin regularly,
in the hope of avoiding the need for pain relievers in the future.
Other than
that, I live as I always did. I eat what I want, without dietary
restrictions. I enjoy wine with dinner several nights a week.
As for Mike, he says he says he feels better than he has in years.
He looks great, too. For me, being able to live a normal life
with my husband is beyond price.
So for anyone
considering being a living donor, I'd say: Go for it. I've heard
that some donors have episodes of depression or doubt afterward,
for whatever reason. I didn't, so I can't speak to the experience.
However, I
do have one piece of practical advice. The transplant center will
follow the organ recipient as long as the organ is functioning,
but you're on your own after the surgery. Get copies of all the
medical evaluations you go through for the transplant, and all
the hospital records, and give them to your regular doctor. He
or she will be the one who has your health, rather than the recipient's,
foremost in mind. The records are your baseline, against which
any deterioration in kidney or other physical function will be
measured.
Over the years,
many thousands of living donors have given up kidneys for loved
ones, or even strangers. The procedure has a long track record,
and the risk of serious after-effects is low -- but not non-existent.
So take care of yourself, too.
All information
provided in this site is offered for educational purposes only,
and it is not intended nor implied to be a substitute for professional
medical advice. Always consult your own physician or healthcare
provider with any questions you may have regarding a medical condition.
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