A Sprint to a Transplant

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Special Report
The American Spectator

A Sprint to a Transplant

By Lawrence Henry
Published 7/11/2008 12:08:05 AM

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.


Lawrence Henry writes every week from North Andover, Massachusetts.

http://www.spectator.org/dsp_article.asp?art_id=13512

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Follow-up:

Reader Mail
The Dearness of Life

Published 7/14/2008 12:01:18 AM

RARE INSIGHT
Re: Lawrence Henry's A Sprint to a Transplant:

No, Lawrence Henry, you have not become a "bore." Your pieces are the ones that stay with me. While political and policy debates are important, conservatives know there is a deeper level, where you have been privileged (cursed? chosen?) to travel.

When the hands on the prom clock sweep toward midnight and the DJ calls last dance the wallflower plucks up his courage and asks his dream girl to dance. She likely says no, but if yes then the next three-and-a-half minutes of pop song are moments of eternal splendor. He may never be more in the moment than that life-or-death time. The taciturn middle-aged farmer coaxed into remembrance of that moment will wax tersely rhapsodic as he steals a fervent glance at the house by the field where that lady now lives, like a man gripped by the Spirit and speaking in tongues words that are not his own.

I think the dearness of life you've been forced to experience has you speaking in tongues to us. Praise to the great Author for giving you words.

I'm acquainted with the cause of your travail: last year my mother died after decades of kidney disease, but not before her transplant gave her another 15 years, including a decade to love grandchildren.

She suffered the cruelty of a chronic disease that lasts for years, like long lonely dark nights of digging, never knowing if morning would find a grave or a fresh flower bed.

She didn't give her grandchildren glorious pearls of wisdom from one bravely facing down death over and over again. Instead she quietly gave them the gift of being completely in their moments. Unprompted, they remember her unforgettably as the one person who "really listened" to them; and because of that they know what it is like to be unconditionally loved.

While their Dad fussed like Martha over better sippy cups and car seats, Grandma listened to the grandkids like Mary at the feet of the Rabbi, and they received a portion that would never be taken away from them.

My mother held on and postponed trading in her painfully frail body for a body of glorious light, until she'd given what she could to those grandkids. At the last moment I whispered into her semi-conscious ear: "It's okay Mom. You've given everything. You can go on."

It is a little bit like that love when a writer stands before the thousands in his readers' amphitheater wearing a ridiculous hospital gown, worse than naked, saying "Here are my wounds. Here are my travails. Not sure what It All means, but here are some things on my heart and some things I've observed. Not sure what the clock reads. I'm hoping I come through this. But what moments I have -- they are yours."

We'll pray for success. We're not done listening to you.
-- Eric Richter
Grand Rapids, Michigan


Henry David Thoreau observed, "Most men lead lives of quiet desperation and go to the grave with the song still in them."

Mr. Henry, you have never bored us. You have sung your song, and your loyal readers, hope for your healthy return so you can sing your song about matters of life and death for a long while. Repeating a refrain with subtle changes and added nuance is the goal of jazz masters, and also many a good writer.
-- Ira M. Kessel
Rochester, New York


Far from boring your readers, you are doing a great service writing about your experience with the IVIG protocol at Cedars. Lives should be saved.

My daughter had a PRA of 87% and was reacting to my tissue and we were told at our transplant center in San Francisco two years ago that she would reject my kidney and those of her father and two uncles and would have to remain on dialysis, probably until she died since her PRA was so high.

Finally, a nurse at her dialysis clinic, after hearing that we were given no hope, told Soraya that he knew there were protocols that corrected the antibody problem and suggested she go on line and research it herself. She found Cedars-Sinai and called there and made an appointment for us to be evaluated. Within two weeks we were in LA and after taking blood from both of us and placing it in a test tube with IVIG, they told us they believed the protocol would work for her.

It is still inexplicable that her doctors at two major transplant centers in San Francisco insisted that they had never heard about the High dose IVIG protocol developed at Cedars. It went through NIH trials and has been approved and paid for by Medicare since 2004. Dr. Jordan and his co-inventor, Dolly Tyan who is now at Stanford where they offer exactly the same protocol, have published their results in all the major transplant journals and presented at the American Transplant Congress for years.

Anyone in the United States for the past four years could have gone to Cedars and had the protocol and had it paid for by Medicare. Thousands of people who could have been helped if the protocol was available nation wide have died during these four years.

What we can't understand is why only Cedars, Stanford and the University of Toronto have learned the protocol. Dr. Jordan has offered for four years to teach it to any transplant team in the world and only Stanford and Toronto have gone to Cedars and learned it and gone back home and are having the same success rate, at least 90%, as Cedars. Dr. Dennis Glotz also offers the protocol in Paris.

Because Medicare has been mandated since 1972 to pay for transplant, and since Medicare pays for the High Dose IVIG protocol developed at Cedars, it is available to any person who is in End Stage Renal Disease. Medicare agreed to pay for the protocol at Cedars because if people can be transplanted with the living donors who have offered them a kidney but been turned down by other transplant centers as "incompatible" the patient gets off dialysis which costs Medicare a minimum of 63 Billion a year just for the basic dialysis and about twice that because all the complications and hospitalizations dialysis patients endure. Each person who gets off dialysis saves Medicare between $60,000--$150,000 per year. After transplant, the cost to Medicare is about $17,000 a year for anti-rejection drugs. The VA has begun referring veterans to Cedars.

We had absolutely no out of pocket expenses at Cedars except our personal living expenses while we were in L.A.

After only one infusion of IVIG, Soraya's antibody levels, specifically her reaction to my tissue, came down low enough to do the transplant. It has been two years now. She is well and healthy and has had no rejection episodes.

We launched a website http://www.reindeermotel.com/ last fall to try to get the information to the general public: and two weeks ago, ABC 7 San Francisco did a feature about the protocol now being offered at Stanford: and we have a Youtube playing with the short version. http://www.youtube.com/watch?v=0fKCab7Y2Ts

Believe me, you are not boring anyone attached to a dialysis machine.
-- Joan Lando


I guess I don't mind reading about Mr. Henry's kidney problem. He's straightforward about it with nary a hint or maybe only a little tiny bit of self-pity. And of course, the trade-off is pretty good: I'd gladly take ten kidney articles for every one of the grandma riding down the middle of Fifth Avenue on a Sunday morning articles any day of the week.

You guys got a gem of a writer in Mr. Henry. You're a gem, Mr. Henry, and my best wishes to you and I sincerely hope that I get to read your wonderful articles for many, many years to come.
-- Paul McGrath
Cameron Park, California


I would not regard Lawrence's articles about his medical difficulties as boring. A lot of people suffer but not everyone can write as well about it as Lawrence. However, I think that despite it all, there's still plenty to write about. As part of a cure to cheer Lawrence up, my unsolicited medical advice is for him to watch the Best of Abbott & Costello, now out on DVD.
-- Vern Crisler
Gilbert, Arizona


You fight the good fight. Good luck from a liver cancer survivor who went to Miami and got a transplant from the University of Miami Transplant team.
-- Cecil Thorpe


I wish the best for Lawrence Henry. I donated a kidney seven years ago and have never regretted it. I hope if his two potential donors don't work out someone else will volunteer.
-- name withheld

http://www.spectator.org/dsp_article.asp?art_id=13522