I joined the One Kidney Club

I donated my kidney to a stranger last month. That should be a much more normal thing to do than it is.

In early March of this year, my sister shared a fascinating anecdote about several of her friends involuntarily becoming kidney donors while they were in Mexico getting "mommy makeovers." They discovered this when one of them got a CT for unrelated reasons and the doc said "did you know you have one kidney?" Shortly afterward, all of the rest found out that they had had the same happen to them. In the course of that conversation, I mentioned that I had thought about donating for a while and my sister mentioned that her best friend's husband was in need of a kidney as he had recently been diagnosed with Polycystic Kidney Disease. This was the event that moved me from “y’know, someday I should donate my kidney, there are a LOT of people that need one” to “OK I’m doing this now.”

I went through evaluation to donate to him, but from the outset I said "if he doesn't need it, I'll still donate." He had another friend that was better matched, so he was already taken care of, so that put me down the "altruistic donor" pathway.

What to expect when you’re expecting (to donate) a kidney - a booklet that summarized what I learned in an hour long class about the process.

The experience of donating a kidney was fascinating–I filled out a form, took my blood pressure 5 times, attended an hour long class about the process over zoom, and a few days later I was in a hospital getting a CT scan with contrast dye–all before I had done any blood work or talked to any doctors. The CT scan was itself an experience worth discussing. I laid down on a table, the CT operators hooked me up to an IV, and then asked me if anyone had told me what to expect, and I said no. They explained that I would first get a scan without the dye, and then they would start the contrast and run a second scan, and I was to remain very still the whole time. They explained that the contrast dye would make me feel a slightly unpleasant warm sensation starting at my head and progressing to my toes, and that when it passed my groin, it would “feel like you peed yourself, but I promise you won’t have done.” That was… accurate in every detail.

I then talked over the phone and on Epic’s version of Zoom/Skype with a lot of different people who mostly asked me “why do you want to do this” “are you sure” and “you can change your mind ANY time” as well as a series of questions about my health history - a nurse coordinator, a social worker, an “Independent Living Donor Advocate” and several assistants to those folks.

After being asked why I wanted to donate, I then gave a bunch of blood for a battery of tests to make sure I was healthy (kidney function tests, cholesterol tests, etc etc) and that my health wouldn’t pose a risk to my recipient (mostly various tests of whether I’d been exposed to certain viruses - apparently I had mono at some point that I don’t remember!). In total, I think I must’ve given ~100 vials of blood over the course of the process, which sounds like a lot, but is actually, in total, about as much blood as donating one unit of blood. I have half-joked to my family that if you want to get a ton of tests done to see how your health is, for free, just say you’re going to donate your kidney, get them to run all of the tests, and then back out. They will literally ask you every week or so “are you sure, you know you can change your mind any time” so no one will be upset if you change your mind. To be clear, all donor workup and surgery and post-op care costs to the donor’s hospital are paid by the recipient’s insurance, which is usually Medicare, so the process of donation is free to the donor (except incidental costs like travel to/from the clinic or childcare, which can be often reimbursed by some kidney-related charities).

I then had a 24-hour urine test. That was… fun. The way that test goes is that you pee normally and write down the time, and then after that moment, every drop of urine you make goes into a big jug until that same time the next day, and then you have to take that jug back to the clinic for them to test it. This is because they’re trying to see how much urine you make, and any urine from before you write down the time is urine that you made over the prior several hours. I actually had to do this twice, because the first test showed some concerning results for my potential to make kidney stones, which would pose a problem for someone who donated a kidney. A kidney stone damages the kidney that it came from, and if you only have one kidney, a stone goes from a significant medical problem that you’ll probably recover from without too much fuss to something that might result in you going on dialysis. The first time, I did not know how to close the container properly and a little bit (like 5 mL when I retrieved it, but it looked like a lot more!) spilled onto my rubber car mat on the way to the clinic to drop it off.

Blood and urine samples and CT scan done, I went to the transplant clinic to see the team of physicians, nurse practitioners and the aforementioned coordinator and social worker and advocate in person for the first time. The surgeon that saw me in clinic basically looked at me and my chart and said “you’re pretty healthy, it’s awesome you want to donate, I have no concerns about you, do you want to see your kidney?” He then proceeded to show me my CT scan, the location of my left kidney, its ureter, and its artery and vein. That was pretty cool to see, and it was the first time I had seen imaging of my innards - so far as I knew prior to seeing that CT scan, I might’ve had all my organs backwards (I don’t. My organs are in all of the normal places).

After the clinic visit, the transplant team reviewed my case and decided that I was approved to donate, so they asked when would be a good time. My family had a lot of travel planned for the summer, so in looking at my schedule, we decided that I would donate on July 29.

The Social Worker explained that there are a couple of charitable organizations that will a) make sure your kidney goes to a good match b) will coordinate "chains" of people that need kidneys but have mismatched donor friends to be able to donate to someone else who has a mismatched donor and c) will reimburse expenses involved in donating, including lost wages, travel costs and childcare expenses (I used the National Kidney Registry: kidneyregistry.org). They also converted me to a "family voucher" where instead of just giving with no strings attached, my donation created a "voucher" for one of 5 people that I named to get a living donor kidney in the future if needed - so my gift won't prevent me from "giving" to those family members that are at the highest potential need for a kidney later in life, but also they'll likely not need it ever, so the voucher will likely go unused. The NKR voucher process was a significant reassurance in my decision to give now.

Then came surgery day. On July 29, I went to the hospital in a Lyft at 5:30 AM. I checked in, a nurse came in and gave me some meds prior to surgery (including a new pain med called Journavx or suzetrigine), and then the anesthesiologist put some IVs in, the surgeon said hello, and then… I “woke up” in the Post Anesthesia Care Unit. I put the scare quotes in there because I was drifting in and out of sleep for the next like 12 hours, especially at the beginning, and probably only 50% coherent. I had some incisions on my belly covered with glue, but I did not remember anything after the surgeon said hello. My wife came and visited me after they transferred me to a normal hospital room.

The nursing team showed me some pictures of my kidney (as I had requested). They told me that my recipient was doing well and already producing urine a day after surgery. They progressed my diet from clear liquids to a normal diet much quicker than I expected (the night of the 30th), which was nice. On July 30, they pulled my catheter and I was able to use the bathroom normally, but then they did a post-void ultrasound and I had not cleared all of my urine - apparently my bladder was still waking up from surgery. I tried again, but unfortunately I was not able to clear my bladder, so they placed another catheter. That’s an unpleasant experience that I don’t wish to repeat. This meant that I had to spend a second night in the hospital, so on July 31, after pulling my catheter, I was able to void normally, and I was discharged that day with a big ol’ bag of pain meds from the hospital pharmacy (again, at no charge to me, the donor). Surprisingly, about two days after discharge, I was able to control the pain with just tylenol.

About a week after surgery, I noticed some nerve pain in my groin, which apparently is probably due to the genitourinary nerve getting a little annoyed during surgery–it runs pretty close to the ureter, which they had removed during surgery. A week after that I had a strange burning sensation on my lower abdomen (my incision is above my navel). My doctors prescribed me pregabalin, and it seems to be controlling both of those nerve pain problems reasonably well.

I was able to return to my remote jobs 3 days after I was discharged. I took two weeks off from working in the pharmacy, and on week three I went home early as I was experiencing more pain than I had expected.

So why did I do this? First, my experience working on the kidney/liver floor at Barnes Jewish Hospital as a student pharmacist was, in retrospect, a really important event in my life. In 2017, during this experience, I observed a living donor transplant at BJH. The donor and recipient were in adjoining rooms and I was privileged to watch them take out the kidney from the donor and then watch them immediately put it into the recipient. I then followed the recipient’s course and suggested dose changes to their immunosuppressant and other medications until the end of the rotation. In addition to the kidney donation that I mentioned, I also was present for (but didn’t directly observe) a patient admitted to our service who had received a liver donation, and during surgery he had needed 22 units of blood. Ever since that time, I have tried to donate my O+ blood as often as I can. So far I have donated 47 units of blood - that’s nearly 6 gallons of blood. When I started and finished pharmacy school, I took the Oath of a Pharmacist, and I take my oaths very seriously. The Oath states that I will “consider the welfare of humanity and relief of suffering my primary concerns.” Donating my kidney relieved the suffering of one person.

In 2023, I read Scott Alexander’s excellent article about his experience donating his kidney, which I found hilarious and also very informative and even inspiring. Those experiences led me to a point of “maybe I should donate my kidney some day.”

Second, my faith teaches me to be generous. In a revelation to Joseph Smith, Jesus says that “This is the way that I, the Lord, have decreed to provide for my saints, that the poor shall be exalted, in that the rich are made low. For the earth is full, and there is enough, and to spare.” (D&C 104:16-17) To me, this scripture teaches that as someone who is relatively rich, I need to do my part to “exalt” the poor - to raise them up. In the context of kidney disease, anyone with two functioning kidneys is “rich.” The poor, in this context, are the ~550,000 people living on dialysis. I feel like I have, at least in this context, fulfilled this commandment. I have been made low (my kidney function as measured by eGFR is roughly half what it was before I donated, but I’ll be fine!), and my recipient has been exalted (they’re not on dialysis anymore).

Third, from a broader political frame, it seems really dumb that ANYONE dies on the waitlist for a kidney, or even spends a significant amount of time on dialysis. Dialysis is a monopolized market with two major players (Fresenius and DaVita) that are so dominant that patients literally fear for their wellbeing if they complain about their care. If we can get a small fraction of people to donate their kidneys, those companies become much less relevant. There are approximately 90,000 people waiting for a kidney right now. There are ~329,400,000 people in the United States with two functioning kidneys. That means that to clear the waitlist, we need 1 person in 4000 to come forward and donate their kidney, 0.02% of the population. About 30,000 people are added to the kidney waitlist every year. To keep the waitlist at zero, we need 1 person in 12,000 to donate each year, or 0.009% of the population. If you assume that people live for 80 years and the population stays stable, then over the course of a lifetime, you need 0.73% of the population to become donors at some point in their life to keep the waitlist at zero, or one person in 139.

In a 2021 survey, 86.6% of respondents said they would consider becoming a kidney donor. Of those, 48% said that they would donate to a stranger they had no information on, in the next two months. Assuming that that survey is reasonably accurate (it’s in line with prior surveys - this one shows 46% would donate to a stranger), why do only ~200 people per year donate to a stranger, and how do you get from 46% “would donate” to 0.73% “have donated”? To quote my boss Chris during pharmacy school, “if you want someone to do something, you pay them money.”

There is a bill in congress right now called the “End Kidney Deaths Act” which would create a $50,000 tax credit, spread over 5 years ($10,000/year) for anyone that chose to donate their kidney to a stranger. This 2016 study modeled the economic impact of this bill, and found that it would result in a net $620B increase in welfare (kidney recipients living longer and healthier lives, adjusted for inflation to 2025 dollars), and a net decrease in taxpayer expenditures of $163B per 10 years (adjusted to 2025 dollars). That is a shockingly large number (about equivalent to all of the money the OBBBA put towards immigration enforcement), and that’s on top of giving ~90,000 people freedom from dialysis. Some people have derided this bill as “paying people for their organs” which is literally true, but the number of people that are theoretically willing to give according to surveys (48-86.6%) and the number of people that are needed to clear the waitlist (0.02%) are so different that this isn’t a scenario where you’d offer people some ungodly sum to give even though they don’t want to - this is just giving people who are already willing to give a relatively small incentive as a thank you for saving the government $1M+, which is hopefully enough to move people from “I would give” to “I will give, right now.” The way this bill is structured, it doesn’t allow rich people on dialysis to jump the line by paying some poor sap to give them their kidney (which happens right now - see the anecdote about mommy makeovers at the beginning of this article!). If we can clear the waitlist and keep it cleared, the black market for kidneys would effectively disappear. Freeing people from the burden of dialysis and saving their lives is a cause worth fighting for.

My choice to donate felt right before I donated, it makes me feel satisfied that I did a good thing for another person, and it makes me feel like I’m making choices that are consistent with my belief system. The care team involved in the process were professional, exuded competence, and reassured me throughout the process. To others that I’ve discussed it with, it seems like a very large thing, which I suppose it is, but functionally the largest burden on my life so far has been that I haven’t been able to pick up my three year old when she asks me “hold me, daddy!”, because I’m not supposed to lift anything more than 10 pounds for the first 6 weeks after surgery. That burden will go away in 2 weeks. Completing all of the pre-operative blood draws, appointments, and other tests, plus my admission to the hospital in total took up about 100 hours of my life, mostly in the hospital recovering. While I hope that a few people in my sphere of influence will consider donating too (if you want to, filling out this form will connect you to your local hospital to start the process), my real hope is that we can solve the shortage of kidney donations more permanently. Zero people on the waitlist. People only on dialysis as a brief stopgap before they get their donated kidney. Let’s make that dream a reality.