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Monday, July 20, 2020

So, about that whole kidney donation thing... (Part 4)

[Read Part 1,  Part 2 and Part 3 first for context]

Now that I've shared a little bit about how I got the idea to donate a kidney, and the hoops I had to jump through to get to the point of being allowed to donate, I guess it's time to look outwards and talk a little about the reason for the entire exercise: the person who will (hopefully), wind up walking around with one of your healthy kidneys.

I'd like you to re-read the previous sentence. 

If the word 'hopefully' seems a bit out of place, I assure you it is not.  In fact, it's arguably the most important word in that sentence.  You see, there are several reasons why the person you want to get your kidney might not end up walking around with it:  The two most common reasons are blood/tissue incompatibility and unsuccessful transplant.

Mismatch:  Part of the medical screening process is a blood test to check the donor and recipient comparability.  It's actually a series of blood tests; the first being to check basic blood type compatibility, and subsequent ones (closer to the surgery) to check - and ensure - specific match between your blood and tissue and that of the intended recipient. There's an excellent discussion of the basics of blood and tissue matching for kidney donation here

If you want to donate to a relative or friend but aren't a suitable match, you can opt for what's called a Paired Donation; basically you end up donating to a stranger, while a better matched stranger donates to your intended recipient.  More about that here.  

Unsuccessful Transplant: When you make a charitable donation to an in individual or organization, you hope that your money will be used well by the intended recipient(s).  But there's no guarantee.  The organization may misuse or redirect the money, or the individual may squander the money meant to provide food or shelter, on drugs and alcohol.  

If you're considering donating a kidney, you need to make peace with the idea that the transplant may not 'take'.  Here are just a few scenarios: 

  • The surgeon may botch the procedure (not likely... but he/she is human). 
  • The recipient's body may attack the transplanted organ (despite blood and tissue compatibility). 
  • The organ itself may not function properly after transplantation. 
  • The recipient may neglect his/her anti-rejection meds, causing the organ to be damaged by the body it was intended to save.

The point is, kidney transplantation - while extremely safe, reliable and overwhelmingly successful - is not a sure thing.   

Think about this for a second:  We tell ourselves that we give our hard-earned charitable donations freely, and with no strings attached, and trust that they will be used as we intend.  But a dirty little secret that we rarely talk about is that we are secretly troubled by the possibility that our monetary gifts might be diverted, misused, or squandered. 

How much more so when giving away something you only have one of?!

I encountered an additional hurdle due to my imperfect Hebrew comprehension.

I didn't have a specific recipient in mind.  Maybe I was naive, but I honestly assumed that I had no say in who received my kidney if I didn't have a specific recipient in mind.  I've been walking around with an organ donor card in my wallet for most of my adult life, and figured that whoever was at the top of the list of people waiting for a transplant was the person who would get my organ when I was rolled into the operating room.

So, you can imagine it came as a bit of a shock when I was in the midst of my full day of medical and psychological screening and the social worker who was interviewing me started out her interview with, "It says here you don't have a specific recipient in mind.  So, tell me the criteria for who will get your kidney?"

I just sat there and stared at her across the table.  It was as though she'd been speaking Chinese.  She'd actually been speaking Hebrew, so there was a real possibility I'd misunderstood her.  I played it back in my head a few times to make sure I understood the individual words... but the sentence still made no sense. 

When I asked her to elaborate, she explained that some people gave general instructions, such as 'The recipient must be Jewish'.  Or 'the recipient must be religious'. 

When I just sat there staring at her, she went on; "Others get very specific", and tossed off a hypothetical,  'I want my recipient to be between the ages of 25 - 35, have blonde hair, blue eyes and be a non-smoker'.

She then restated her question: "Tell me the criteria for who will get your kidney?", and began tapping her pen impatiently on the notepad in front of her.

I was stunned.  I felt like I'd shown up unprepared for an important exam.  Clearly this was something a serious potential kidney donor was supposed to know... and I had no answer. 

Add to that the fact that she'd used the Hebrew grammatical imperative (a command rather than a request), so it seemed that I was required to provide an answer.  

I hedged.  I asked if I could think about my answer and follow up with her.  She scribbled furiously for a few minutes, nodded, and then moved on to the next question in the interview.  But I couldn't help feeling I'd flunked the test right there and then.

I went home and had a really troubled week.  Keep in mind,I hadn't told anyone but my wife I was considering kidney donation, at this point.  And I really didn't want to admit to her that I hadn't given any thought to a critical aspect of the process.

Night after night I lay awake troubled by the weight of the decision.  I couldn't escape the fact that no matter how I phrased my criteria, I was playing God.  The moment I gave any indication of who could receive my kidney, I was also giving clear instructions that others could not receive it.  

I was horrified by the responsibility of having the power of life and death over another human being.

When I went back to the hospital the following week to do a medical test that I hadn't had time for the previous week, and to drop off some follow-up paperwork from my family doctor, I asked to speak with the social worker again. 

When we were seated in her office, I blurted out that I wasn't sure I could go through with it.  I must have looked a wreck after a week of insomnia and a good cry on the drive to the hospital, but she pretended not to notice and simply sat with her pen poised over the legal pad, ready to write.

I told here that if I was required to provide criteria for who would receive my kidney that I couldn't go through with it.  I said that I really, really wanted to donate a kidney, but not if it meant sentencing anyone outside my donation criteria to a slow death on dialysis.  When I finished, I started to gather my things to leave.

I must have looked ridiculous with my red eyes and dramatic pronouncement.  But it was like a huge weight had been lifted off my chest.  For the first time in a week I felt like I could draw a proper breath.  I was disappointed to not be able to go forward with the donation, but I really didn't want to be the one to decide who lives and who dies.

Her reaction was a bit unexpected:  She started to laugh.

For the record, it's hard to feel a sense of closure when the social worker isn't taking you seriously after you've one of the most difficult divisions of your adult life.

She explained that I wasn't required to provide criteria... it was just a standard question since many potential donors preferred to have some control over where their organ went.  But many people opted not to provide any criteria; in fact some preferred not to know who was getting the organ!

She gently explained that I wasn't obligated to provide any guidance on who the recipient would be. She went on, that many people don't want to know who the recipient is until after the surgery is a success.  And others didn't want to know even then.

Hebrew is a simple language in many ways, but to a non-native speaker, it can be tricky sometimes.  Note to self:  The use of the imperative does not preclude options.

So, I told her to write down that I preferred not to have any say over who got my kidney (assuming I would pass all the medical and psychological testing, and be approved as a donor).  The transplant team, I felt, would be in a much better position to weigh the two most important factors I could think of: who would be the best match for my kidney... and who needed it most.

I slept like a baby that night.

Stay tuned for the next installment which will provide a short overview of the transplant surgery and the recovery period... and meeting my recipient. 

As always, if you want to be informed of new posts here, follow me on twitter @treppenwitz



Posted by David Bogner on July 20, 2020 | Permalink


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My gut feeling is that my response to the question would be the same as yours. I wouldn't want to play God either. Thank you for this post. I look forward to the next one(s).

Posted by: Ilana-Davita | Jul 20, 2020 11:15:14 PM

Goodness, you did go through a stressful time. I would have been equally floored by such a question. And what a relief that you could leave the decision to the medics. Looking forward to hearing about you meeting the recipient!

Posted by: Jane | Jul 20, 2020 11:27:46 PM

Ilana-Davita... Obviously some people feel differently or she wouldn't have to ask the question. :-)

Jane... Our meeting was brief. We saw each other a few times in the hospital before I was discharged (he had an additional week of observation).

Posted by: treppenwitz | Jul 23, 2020 12:00:19 PM

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