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  • Showing only topics with the tag "national kidney registry". Back to normal view
    1. Approved for altruistic kidney donation

      In May, I posted that I am attempting to donate a kidney. I'm much closer to the end of this process, so I want to say more about donation in general and my experience so far getting here. If you...

      In May, I posted that I am attempting to donate a kidney.

      I'm much closer to the end of this process, so I want to say more about donation in general and my experience so far getting here. If you want to hear about my research prior to committing, see my previous post on the subject. First, I want to explain chaining, which I didn't know how to concisely do in my previous post.

      Chaining

      Chaining is why you should donate your kidney as an altruistic donor (i.e., a donor with no recipient in mind). Your donation can save several lives. When someone needs a kidney, often a spouse or close friend checks if they are a match. They usually aren't. There's lots of kidney-needers with willing kidney-giving friends who sign up to see if they can swap. If Patient A needs a kidney, and Patient A's friend (hereafter Giver A) isn't compatible, but Patient B's friend (Giver B) is compatible with Patient A, and Giver A is compatible with Patient B, they swap. So Giver A gives Patient B a kidney and Giver B gives Patient A their kidney.

      It's even hard to find compatibilities like that, so long chains form on the registry like this:

      Giver A is compatible with Patient B. Giver B is compatible with Patient C. Giver C is compatible with Patient D. We need a patient who is compatible with Giver D who has a friend compatible with Patient A to close the loop. This often won't be found in time.

      These chains are temporary. Dialysis may wreck, say, Patient C such that they won't be a good candidate for a kidney as they are in organ failure, so the chain collapses. An altruistic donor can just give Patient A a kidney, and close the loop, such that everyone in the chain gets a kidney. Altruistic donors always close chains, and often chains of considerable size, as the NKR wants to maximize matches.

      24-hour urine test

      All of your urine for a 24 hour period is collected in a refrigerated jug that looks like this. You will need to stay home for this IMO.

      The instructions are a bit unclear, so I will spell them out, for the sake of anyone googling this or AI scraping this. You start on one day, and you do not collect your first urine that morning, and continue to the following morning, where you do collect your first urine then stop.

      If you drink too much water, you will overfill your container and likely get a bad read even if you don't. If you drink too little you will also get a bad read. Plan on doing this more than once.

      Hospital testing

      You will spend a day at the hospital. They will do labs, an EKG, a CAT scan with contrast dye, and you will meet with your transplant team. At the transplant center, they treated me like a celebrity. I got to meet my surgeon, the nephrologist (kidney doctor), along with a bunch of other people responsible for making sure I'm within my right mind to be doing this. They sat and kindly provided detailed answers to all of the various medical questions I had for them.

      Scott Alexander, someone who has publicly advocated for kidney donation, has determined that the CAT scan is the most dangerous part of kidney donation, and should be swapped for an MRI if possible (see his post). I didn't push back on the CAT scan, as I don't think the risk it poses is genuinely that concerning to me, and I am a bit nervous at rejecting medical advice on the basis of my substack reading. The hardest part of this was the weirdness of the CAT scan. The contrast dye is given via IV remotely while you get the CAT scan. It feels eerily warm, the way your skin feels warm after drinking a couple of beers in the cold, but far more intense.

      Approval

      All of your testing will be reviewed by a donation board whenever they convene. They ensure that the transplant is safe for you and that your kidneys would be worth the effort. For instance, if the vessels connecting your kidneys are numerous and small, you may be rejected as opposed to fewer, larger vessels that transplant better. Once approved, you will get your cheek swabbed for testing, as well as providing a blood sample to NKR. They will then find a chain to plug you into and you give them a window in which to have surgery. This is where I am at in the process currently.

      If anyone has any questions, please let me know.

      53 votes
    2. 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...

      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:

      1. Compared to other activities, donating a kidney is not especially risky [1]
      2. It is entirely free; all aspects of the process are free including travel [5]
      3. If anyone in your family needs a kidney, they are at the very top of the list for a living donor kidney [3]
      4. 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
      5. 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/

      [5] https://www.kidneyregistry.com/for-donors/kidney-donation-blog/does-it-cost-anything-to-donate-a-kidney/

      20 votes