The road to non-directed kidney donation
I've decided to give up my kidney to a stranger and document the process and hopefully my posts can be the kind of resources I wish I had when I first looked into this.
Someone here recently linked to Scott Alexander's post on his non-directed donation experience [1] and afterwards I got recommended Jesse Eisenberg's interview on his experience [2]. I think this led to me thinking about the subject and deciding that I at least need to look into this and see if my worries about it are founded. It turns out they are not. Here are the highlights of my research:
- Compared to other activities, donating a kidney is not especially risky [1]
- It is entirely free; all aspects of the process are free including travel [5]
- If anyone in your family needs a kidney, they are at the very top of the list for a living donor kidney [3]
- NKR will cover up to $2000/week in lost wages using Donor Shield [5], though if your work allows you to take paid time off, I highly recommend you save their resources for those without that luxury
- Non-directed donors can use "chaining" to have their one donation result in 3-7 further donations due to matchmaking on the NKR (this is complicated to summarize, ask if you want information or see the link) [4]
Step 1: Reach out to the National Kidney Registry (NKR)
The ideal way to become a non-directed donor is to reach out first to the NKR. They run the family voucher program that protects your family should they need a kidney in the future. They first have screening questions, then there is a questionnaire about your medical history that you complete, and immediately upon completion, they have labs ready for you to take. I reached out to NKR yesterday morning and had labs completed yesterday afternoon at a local clinic.
As for what's next, my labs will come back and the NKR says I will then choose a preferred donation center. I have absolutely no idea what considerations matter when choosing the best donation center. I assume something local, since I can't fly immediately after surgery and the drive home will be painful.
If you've considered kidney donation and didn't do it, what held you back? I want to know to 1: see if I can correct a false belief you have about the process or 2: see if I should reconsider this whole thing. Also, if anyone wants to join me on this journey, click on any NKR link and click the donate button and let's do this!
[1] https://www.astralcodexten.com/p/my-left-kidney
[2] https://youtu.be/udZi-l8H5jY
[3] https://www.kidneyregistry.com/for-donors/i-want-to-help-a-stranger-in-need-of-a-kidney/
[4] https://www.kidneyregistry.com/for-donors/start-a-chain/
I was in the process for this about five years ago. It was a good point on my life where I felt I had the support at home and the comfort in my employer to be away for a little bit of time to recover California also had good benefits for organ donation.
Unfortunately, COVID hit and the hospital pretty much dropped contact (reasonably so, it was a terrible time for the medical professionals). Life changed for me as well and even though there is small risk, there is still risk in the procedure. With a wife and a kid soon on the way, I missed my window.
Still signed up on the bone marrow registry though! I recommend all people to register for it, especially if organ donation is not in your comfort zone.
Bone marrow is also a lot easier these days than it used to be — you get a few days of injections that can make you ache a bit but that's about it, and then you sit in a hospital for a day while they filter the stem cells out of your blood. It's basically painless, and the worst thing that happens to you is boredom.
Depending on what country you live in, it's typically very easy to sign up as well — I was able to do all the swabbing by post, and that was that.
Also (and mainly a reminder to myself because I've just moved): remember to update your contact details if you're already a donor and you've moved around. It's the sort of thing that you can sign up for and then only become relevant years later, so keeping the contact details up-to-date is important. That also seems to be very easy, just a few seconds to update.