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.