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Advocacy Living Donor Misinformation Living Donor Risks Living Kidney Donor Transplant Wait List

Open Letter to Ann Work: A Kidney is not a Spare

Ms. Work,

I just read your story on Ms. Silvestri’s living kidney donation (found here), and found the misconceptions and errors contained therein to be highly disturbing.

 

1. A kidney is not a spare. While one can function without an arm, or eye, no one would consider the second a ‘spare’ and no one would ever consider one as beneficial as two. The remaining kidney does not ‘grow’, but hyperfiltrates, meaning the actual cells of the organ swell under the pressure of doing double the work. This adaptation leaves the kidney and its nephrons more vulernable to toxins, disease, damage and age.

Consider what happens to a balloon when air is forced into it.

 

2. While the intended recipient’s insurance pays for the evalution or surgery, many living donors have reported bearing the cost of complications or mental health services post-donation. Many insurance policies will have a time or money limit on their living donor benefit, which leaves the living donor with permanent nerve damage or adrenal dysfunction responsible for their own care. Mental health services are never covered.

 

3. Yes, it is illegal to sell OR BUY a kidney in the US, but recent reports have indicated the transplant industry’s lax attitudes on the matter. See Dan Rather’s “Kidney Pirates”, as well as Nancy Schepler-Hughes profile on the Rosenbaum trafficking case here: http://www.counterpunch.org/2011/11/30/the-rosenbaum-kidney-trafficking-gang/

 

4. A kidney donor in need of a kidney does NOT go to the ‘top of the list’. That individual is given four LOCAL priority points, which amounts to approximately one year of wait time on the list. See here: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_172.pdf

 

5. Where is the proof that “99% of donor weather their surgery with ease”?

4.4 living kidney donors die each year in the US within 12 months of surgery. 20% experience complications. 20-30% suffer from depression, anxiety, grief, anger and PTSD.

There are no national standards of living donor evaluation, selection, or treatment. Each US transplant center makes up its own rules.

There is NO comprehensive short or long-term data. The first LKD occured in 1954, yet no identifying info was collected on LDs until 1994. In 2000, the Secretary of Health mandated one year of follow-up on all living donors (2 yrs as of 2006) yet 30% are still reported ‘lost’, and not a single transplant center has been penalized for noncompliance.

 

I understand, Ms. Work, that your information was most likely gleened from the local organ procurement organization, a nearby transplant center or surgeon, or even the websites of OPTN or UNOS. But they all benefit from living donor transplants, financially and otherwise. Before penning your next living donor related article, I urge you to consider sources outside of the transplant industry, folks and groups that prioritize the protection and care of living donors. They will have the most insight.

 

Sincerely,

LD101

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