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Bad Art Friend Kerfluffle

A group of writers decided to behave like terrible human beings to another writer, who also happened to participate in kidney chain as a non-directed living kidney donor, which resulted in a very popular article in The New York Times Book Review.

No, I’m not going to link to it; Google is your friend.

I did whip off a Twitter thread the night this article went viral, because (naturally) no one seemed to understand that Dorland had to pass a psychological evaluation to donate, and despite her obvious vulnerabilities, was permitted to do so.

The conversation about this situation continues unabated as, seemingly, every writer *everywhere* is penning and publishing their perspective on it.

I have not. Nor will I.

Firstly, because I tried that when I was in the thick of LD101 and this blog, and not a single editor anywhere wanted to hear anything except rainbows and puppy dogs in reference in living donation. It didn’t matter that I had myriad academic articles and other assorted evidence. Hell, a particular reporter at the NY Times, who had composed multiple pro-donation articles, even accused my cohort of “conspiracy theories” (Pretty hilarious given this country’s recent history and current situation on that particular topic).

Anyway, I’ve had to listen to the same bullshit discourse regarding transplants recently as I did in 2008 and the ~7 years following:

  • Living donation is safe (A quick search of this site will reveal that to be untrue)
  • The mythological “spare” kidney (Do you have a spare arm/leg? I don’t think so)
  • “Life-saving” kidney transplant (Transplants are treatments, not cures. Most recipients will need multiple transplants to achieve an average life span. Many folks with end-stage renal disease are not good candidates for transplants. And there are other treatments; namely, dialysis)
  • And of course: I really hope this (depiction of the aforementioned living kidney donor’s behavior) doesn’t discourse people from donating (insert eye roll emoji here)

All of this has provoked two – wait, three – consequences for me:

  1. It’s made me talk about shit I stopped talking about years ago, because I’m tired of being branded a liar, conspiracy theorist (see above) or any number of random insults.
  2. It’s really, really pissed me off, which is not great.
  3. It’s triggered the hell out of the PTSD I obtained as a result of being a living kidney donor, which is really fucking bad.

So, if you end up here, don’t come at me with “the site hasn’t been updated in X number of years”. No shit Sherlock. Unlocking the history of the transplant industry’s shenanigans while poring over every published academic article I could find *and* conversing with potential and current living donors who were wounded and trying to find their way through the labyrinth; plus commenting on the media’s perpetuation of misinformation and one-sidedness (thanks google alerts) was a FULL TIME FUCKING JOB FOR WHICH I DID NOT GET PAID.

Use the search function. Look up the source material (which is *always* noted/linked). Everything is in these pages and posts. If you’re too lazy to read, then do us both a favor: STFU and go away.

Categories
Ethical Considerations Liver Donor Living Donor Research Living Donor Risks Psychosocial Risks

Liver Donors Suffer Emotionally Post-Transplant

Even I was pretty shocked by the breadth and depth of this one.

South Korea, Japan and other Asian countries perform a lot more living liver donations than the U.S. because deceased donor livers are unavailable (or in very short supply). I’ve been well aware of the possible detrimental psychological and emotional consequences of living donation (kidney and/or liver) for quite some time, but this surprised even me.

Of the 30 categories derived from the liver donors’ interviews, 27 were unambiguously negative. While it would be easy to dismiss these results with “They only talked to 10 liver donors” and “It’s only one study” or even “it’s a cultural thing”, the authors admit the results confirm what other previous researchers have found. And I’ve heard variations of these same sentiments from American living donors many times over the past six years.

In other words, this is not an aberration.

 

Here are some examples:

“I felt more emptiness than a sense of fulfillment of donating my liver.”

“If I had known about the physical side effects, it wouldn’t be so tough mentally. I resent that I wasn’t given information about this.”

“The donor also underwent a huge operation but all the guardians go to the recipient…” [Note: I don’t know what “guardians” refers to here, but the category was “focus on the recipient”, a sentiment I’ve heard a lot]

“I don’t believe TV anymore. It tricked us by showing a donor saying that nothing was wrong after the donation.”

“We can’t tell the recipient where we are hurting. Even if we are hurting. We have to be careful. ”

“I get really depressed. The loss of energy makes me feel really depressed.”

“Even after two years since donating my organ, I can’t sleep well and even when I do sleep, it feels like I didn’t sleep properly.”

 

 

Please click the link above and read the entire chart.

 
Jeong, & Yoo (2014). The psychological and mental experiences of living liver donors in South Korea Contemporary Engineering Sciences DOI: 10.12988/ces.2014.49149

Categories
Ethical Considerations Informed Consent Psychosocial Risks

Unintended Consequences

Excerpt:

…former Chicago Bear Dave Duerson that, after deciding to kill himself last Thursday, he shot himself in the chest, apparently so that his brain could remain intact for similar examination.

This intent, strongly implied by text messages Duerson sent to family members soon before his death, has injected a new degree of fear in the minds of many football players and their families, according to interviews with them Sunday. To this point, the roughly 20 N.F.L. veterans found to have chronic traumatic encephalopathy — several of whom committed suicide — died unaware of the disease clawing at their brains, how the protein deposits and damaged neurons contributed to their condition.

Duerson, 50, was the first player to die after implying that brain trauma experienced on the football field would be partly responsible for his death.

Because of the trauma I experienced after my kidney donation, including the transplant industry’s complete abandonment, I took it upon myself to look beyond the headlines and marketing material and began digging into published research articles. This lead to a closer examination of the history of the US transplant industry, including the activities of DHHS, HRSA, ACOT and OPTN/UNOS.

With each revelation, I was struck anew with horror and betrayal at what had been done to me without my consent. The adrenal dysfunction, pancreatits, higher risk of end stage renal disease, chylous ascites, cardiac issues, lack of long-term data, etc. By the time of my six month follow-up appointment, I was so terrified of how my body had been compromised that I couldn’t even look at my lab results.

I imagine this is, to some extent, how Duerson felt when he realized his football career may have permanently and crucially damaged his brain. He was prepared for the broken bones, strained ligaments and separated shoulders, but memory loss and unfixable depression? That simply wasn’t part of the contract.

Some players have, so far, been able to deny this phenomenon (just like some living donors I encounter, but that’s a post for a different day), but Duerson had to listen to the stories of the ‘old-timers’, how they ended up broke and homeless, and he saw first-hand how this brain damage could ruin a person’s life. His feelings of helplessness and futility must’ve been unbearable.

So far I’ve been lucky; my health and remaining kidney are holding steady. But I’m not naive enough to think I’m home free, and that’s why I have nothing but compassion for Duerson and his loved ones. I understand.