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Living Donor Risks and Misinformation

In the latest issue of Transplant Chronicles, the newsletter published by the National Kidney Foundation, there is an article by a Dr. Leslie Spry, transplant surgeon. In it, she attempts to dissect the risks to living donors.

Most studies report death rates for donor nephrectomy in the range of 1 or 2 per 10,000 donor surgeries. About 1 or 2 per 100 patients may experience a post-operative wound infection or complication and about 50% of these may require re-operation for a complication.

In a report from the Organ Procurement and Transplantation Network in 2002, only 56 donors out of over 50,000 donations since 1987 resulted in kidney failure that required a transplant. Current policy in the United States is that donors who lose their entire remaining kidney function and require dialysis, go to the top of the list for kidney transplantation.

Sounds good, right? Not to one UNOS board member, who wrote this missive and posted it on the Living Donors Online forum:

Sent to Jennifer Martin to discuss with Dr. Spry and the editorial board of the NKF web site:
Dear Jennifer,

Some feedback for you! In reading Dr. Spry’s piece, “How’s my (Living) Donor?” I came across:

“In a report from the Organ Procurement and Transplantation Network in 2002, only 56 donors out of over 50,000 donations since 1987 resulted in kidney failure that required a transplant. Current policy in the United States is that donors who lose their entire remaining kidney function and require dialysis, go to the top of the list for kidney transplantation.”

I find several errors in this statement, specifically, it was an SRTR report to UNOS, it has been retracted and revised to at least 100+ donors that they know of, and they have no way to know how complete their data is and presume the true number is higher. Donors are frequently told, incorrectly, that they’ll “go to the top of the list” if need be. This is not true.

While I realize a comprehensive complication list would be long and intimidating, it seems disingenuous not to include documented risks such as fatal blood loss during surgery and the peri-operative period, not just depression but suicide, reduction of adrenal function, testicular swelling, and non-medical complications such as loss or difficulty retaining or obtaining health and life insurance, the financial challenges of lifelong disability, and divorce. Most donors don’t experience these horrors, and comprehensive studies are overdue, but all these have cropped up repeatedly in peer reviewed studies, case reports, and the media.

I hope you and Dr. Spry find this helpful.

 

To chirp in with my own thoughts, here are some selected quotes from the article:

“The psychological aspects of kidney donation have not been as well studied, but are usually cited as the benefit to the donor.”

That’s pretty darned skewed. Gosh we really don’t know but we’re going to tell you it’s all rainbows and puppy dogs because we really need your kidney (yes, sarcastic rant, but sheesh…)

 

“Psychological testing must also determine that the donor is capable of participating fully in the informed consent process for the donor operation.”

MUST – really? If they consider a social worker making sure I’m conscious and not taking antipsychotic medications as ‘psychological testing’, then I guess I received it.

 

Dr. Spry doesn’t include any references or footnotes or links, which always sends my spidey sense tingling cuz I’m not the trusting sort these days when it comes to this stuff. Somehow she can reference a specific journal issue that rated www.livingdonorsonline.org as the #1 kidney transplant info site on the web but she can’t back up her cited studies and stats?

 

UPDATE 1/22: Donna Luebke from LODAP has this to add about the original Transplant Living article:

Also of concern is that Dr. Spry is totally out of touch with the increase in ‘expanded criteria’ live donors in the last 5-6 years. These donors are NOT healthier than the general population. Plus, she does not get that donors cannot be compared to the general population. We become our own denominator or at least with those who have a lone kidney. All too long the transplant community has perpetuated misreporting statistics, donor outcomes, etc using the wrong denominator. The 56 or so donors in the 2001 Elison, et. al article regarding kidney donors who developed ESRD was about only that many donors took their 4 points of credit on the wait list. Is important to report accurate and honest information which impacts informed consent. Since 1988, UNOS and the SRTR have data on living donors who went on to be listed which is probably nearing 150. I have seen data on the first 115 data. One huge data flaw is that a kidney biopsy report is noted as the reason for ESRD; not a disease. This is sloppy data collection. I would expect more for the millions we pay out each year to UNOS and the SRTR for data collection and analysis.

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