By Lawrence Henry on 7.11.08 @ 12:08AM
None of this would work without a donor.
This past week, I made a three-day trip to Los Angeles. I stayed
at my mother's place and had six hours of appointments and tests
with the kidney transplant team at Cedars-Sinai Hospital in West
Hollywood.
Cedars-Sinai kidney doc Stanley Jordan devised a technique for
overcoming antibody sensitivities in a certain category of kidney
patient -- namely, me: patients who had had multiple prior
transplants and lots of blood transfusions, patients who had
developed highly powerful immunities to the tissues of others. The
kidney world measures that antibody power in a scale called Protein
Reactive Antigen, expressed as a percentage. My percentage is 90,
meaning I have antibodies to the antigens (protein strands) of 90
percent of the population.
Not good. Though I reside at the very cusp of the transplant
list for my registered region (centered on Albany, New York), and
though my transplant center (in Burlington, Vermont) is testing
every available O positive kidney against my antibody profile,
chances are I will wait a long time before a matching kidney shows
up. It may never show up.
Meantime, about a quarter of transplant candidates die every
year. The comparison does not hold entirely (you're talking about
two different populations), but work it out: a 10 percent chance of
a transplant against a 25 percent chance of dying.
SO ONCE AGAIN, I HAVE HAD TO TAKE MY TREATMENT into my own hands.
If you've got a serious illness, you know what I mean. If you don't
push treatment for your own benefit, that treatment will at some
point simply come to a halt, stalled on bureaucratic inertia.
I'll give you an example. The kidney team at Cedars wants me to
have a stress echocardiogram and a new colonoscopy. Once back home
in New England, I called my cardiologist to schedule the echo.
"I don't think we do that," said the doctor's secretary.
She assures me she will look into it and get back to me. But in
fact it's up to me. I will call all our local hospitals, speak to
someone at the cardiac care unit, and find out where the test is
offered. Then I will call the transplant coordinator in Los
Angeles, and have one of the doctors order the test (I can't order
such a test myself).
ONCE I HAVE THOSE TESTS OUT OF THE WAY, I go out to Los Angeles
again for a stay that will probably extend to 12 or more weeks.
Week one, I get an infusion of intravenous immunoglobulin, designed
to kill off or depress my antigen antibodies. My blood gets tested
to determine the success of the infusion.
Depending on test outcome, in week three, I will have either
another IVIG infusion, or undergo plasmaphyresis, which is a form
of hemodialysis, designed to scrub out antibodies -- or, I will
receive yet a third treatment with one of two drugs, designed to do
the same thing.
Week five, test again for antibody suppression, administer
another IVIG infusion, drug treatment, or plasmaphyresis. This
routine -- "Dr. Jordan's special treatment," as one of the doctors
I saw described it -- should prepare me for a transplant, which can
then be scheduled.
None of it would work without a donor. Luckily, I have one. He
volunteered when I first solicited donors, some 18 months ago. He
is one of my colleagues in journalism -- one of two writers who
volunteered, in fact. I leave it up to these two volunteers to tell
their own stories, if they want.
Because of the generosity of my donor, in week seven or
thereabouts I should get a kidney transplant. Dr. Jordan has
treated some 300 patients like me. His success rate is 85-92
percent.
Readers, I fear I have become a bore, clinging to your sleeve
like the Ancient Mariner, telling of matters of life and death.
Right now, there is not much else to write about.
topics:
Hollywood, NATO
