The American Spectator

Reader Mail

The Dearness of Life

7.14.08 @ 12:01AM

(Page 2 of 4)

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 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.

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

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