In the interest of full disclosure:
Last night, I got hit with three different living donor related events in the span of a couple of hours: an email from a living kidney donor who lost her job due to chronic fatigue (which may or may not be related to adrenal damage during the nephrectomy); a living donation storyline on a primetime show (and they always get it wrong); and finally, this advertisement soliciting for a living kidney donor in a local weekly alternative newspaper.
Here’s a pdf of the ad if you want to see/read it in its entirety. I apologize for the unevenness; the publication page is bigger than my scanner bed.
If I haven’t said it before, I have tremendous ethical issues with people who solicit for a living donor. While I can fully understand the fear of illness and/or death, and parental love driving folks to desperate measures (as is the case here), asking someone (a stranger!) to permanently compromise themselves for you, and get nothing in return is the height of selfishness.
Would-be recipients are almost never told the risks of living donation. A former member of the UNOS living donation committee (a living kidney donor) suggested such a policy a couple of years ago. The other members of the committee (not living donors) were apalled at her suggestion; this knowledge, they said, would place an undue burden on the poor, sick recipient. The commitee didn’t deny the existence of risks, just simply that the recipents shouldn’t be required to know about them.
(Meanwhile, the transplant centers from which these committee members originate are teaching would-be recipients how to broach family, friends and strangers to give up organs for them.)
Nathaniel’s family, however, doesn’t have the excuse of ignorance on their side. His mother gave him a kidney and so did his aunt. Now he’s in need of a third at only 20 years old. What they fail to say in the midst of their sad tale is that Nathaniel is now highly sensitized. Long story short, it means that Nathaniel’s body will reject most any organ given to him, and that it will be incredibly difficult to find a kidney that his body will tolerate for even a little while.
The situation is severe enough that 18 people have been tested as potential matches for Nathaniel and all 18 were rejected (16 for antigen reasons). It’s difficult to believe that one of those 16 people couldn’t have been used in a swap or chain in some respect. After all, highly sensitized re-transplants are the reason these things were created in the first place. I find it curious that the family doesn’t mention this possibility becuase it limits Nathaniel’s choices. I suspect there’s something we don’t know.
(On a more pragmatic note, who paid for all of that lab work – Medicare aka the tax payers, or private insurance, which explains why our rates keep increasing?)
Nathaniel rejected his aunt’s kidney after three years becuase “it was not as compatible” as it should’ve been. In other words, the transplant surgeons, in their arrogance, disrepsected her sacrifice and wasted her organ. She has a lifetime increased risk of hypertension, cardiac disease & death, not to mention kidney failure as a result of their actions. Have any of them bothered to apologize? I doubt it. (Although, I’m sure they’ll be there with scalpels at the ready if she needs her own transplant in about 15 years.)
The family claims “there is no medical reason that a transplant with a compatible kidney would not be completely successful”, yet there’s no reason it would be either. I’m sure the surgeons issued the same reassurances before compromising the aunt too and we all know how that turned out.
“The transplant would be in New York City” – this is an advertisement in a newspaper in OHIO. So not only do they expect some unsuspecting, good-hearted person to put their life at risk (short and long-term) despite all the clanging warning bells*, they also expect them to travel to New York City and put their life in the hands of unknown surgeons at an unfamiliar (and unnamed, what’s up with that?) facility.
There is no legitmate reason why the organ can’t be procured at a local transplant center and flown to New York for retransplantation. First off, they do it all the time with deceased donor organs and secondly, it provides better care for the living donor.
For example, when the living donor is discharged in NY and sent packing back to Ohio, who will treat any complications that arise? Anything resulting from the surgery is the responsibility of the surgeon and facility that performed the operation, not some ER doc who happens to be on duty when said living donor rolls in complaining of pain or bloating. And if the living donor does require re-hospitalization, or treatment of any kind including psychological, who will foot the bill? Again, this is the responsibility of the recipient and the facility, but there is no process for being two states away and billing to a third party, not when the first thing any medical professional requires is a copy of your insurance card.
The truth is, Jonathan Zavin and Bernadette Hogan don’t care about any of the things I’ve just written. Their only concern is for Nathaniel. While some may agree with that perspective, I say it’s not only selfish but detrimental. Two people have already been maimed for Nathaniel, permanently harmed in ways we can barely predict because of the absence of long-term data, yet they find dialysis so abhorrent# they’re reaching for a third, this time a stranger they’ll never have to see again.
Some say that character is defined by what you do when no one is around to watch; I say that character is the decision you make when your gain is predicated on someone else’s loss. Wanting to be healthy or wanting your loved one to have an improved quality of life is completely understandable, but it never justifies preying on the generosity of others, especially when that manipulation results in permanent bodily damage.
*bells that will go unheard because of a lack of knowledge about organ transplantation.
# From the ad: “not a viable long term solution” except that people live for 15-20 yrs on dialysis just fine; “not efficient as a kidney” except that recent studies indicate the results of dialysis to be equal to that of a transplant; “numerous unpleasant side effects” except that anti-rejection meds also have negative side effects, including an increased risk of cancer.