Declutter your torso: why I gave my kidney to a stranger and you can too

I could hear them debating, talking about my status and how I was responding. There seemed to be a lot of talk. I can’t stand meetings that go nowhere. With a great deal of effort, I pulled open my eyes and looked to the orderly on my left.

“There’s been enough talk, let’s do this thing.”

He looked at me with confusion, and after a beat he said “Your kidney removal? It’s done. It was done an hour ago.”

I nodded vaguely and went back to sleep.

This is a post about my decision to donate my kidney to a stranger, and my experience of donation.

My goal is to build awareness of a golden opportunity - a chance to give a little and help a lot:

• If you’re cleared to donate you face very few risks and complications (particularly if you’re male, under 50, and do not have other major health concerns).
• The surgery cost me nothing, my recovery was quick, and long-term my life will be minimally impacted.
• But two people got new kidneys as a result, adding up to 10 years to each person’s life.

If this opportunity intrigues you, please consider reaching out to Waitlist Zero to schedule an initial call with them. If you’d like to know more about my experience, read on.

What Drew Me

I’ve always had a pretty pragmatic view of mortality. I grew up on a farm, and it built an unprecious attitude about the circle of life. So I’d always been very open to organ donation, but I thought it was something you do after death. I always checked the appropriate box when applying for a new driver’s license.

I hadn’t really thought about it as an action I could take *during* my life. Partially it was because I wanted to save that gift for a future child who might need it. In 2018, I realized that I don’t want to have kids, and so this was no longer a direct concern. Around the same time, Vox released a new podcast called Future Perfect about effective altruism, and their first episode was about donating kidneys to strangers. This led me to a 2017 blog post by the podcast guest, Dylan Matthews, and I found his argument very compelling. Donating one’s kidney is a relatively light cost to the donor, and a huge benefit to the recipient. The ROI ratio was staggering.

The Tradeoff is So Good

I’ll try to keep this portion short, as better writers than I have explained why this is a good decision.

But the topline elements are:

Life for those with kidney failure is painful, expensive, and unjustly short

• Regular dialysis visits are required to cycle your blood through a machine that does an okay approximation of the toxin-clearing done by a normal kidney. Even so, patients can expect 10-year-shorter life expectancy.

The need for donors is great

• UCSF has done about 2500 transplants in its history, making it a leader nationally. But it has over 2000 people on its waiting list *today*. Unless we get more donors, many will die before they reach the front of the line.

Recovery for donors is fairly easy in the short- and long-term

• The complications rate for this surgery at an experienced facility is vanishingly small (like 1 in 1000 level). Risks are especially low for donors that are male, under 50, and do not have chronic conditions (especially high blood pressure).
• Medical technology has progressed to be barely invasive. I awoke with 4 dime-sized holes in my side (where they’d stuck laparoscopic tools in), and a 6" horizontal slit above my groin (where they’d slipped the kidney out through a natural hole, between two layers of muscle). The end result was no muscles or bones cut, which is a game-changer for recovery time. It’s a week of pain and a month of low-energy recovery.
• No acute long-term effects. Your remaining kidney grows and does the work of the original pair by itself. In fact, people who’ve donated their kidney have a *smaller* chance of kidney failure than the average person. (Admittedly, this is statistical mischief. If you’re healthy enough to be cleared for donation, your kidney risk is significantly below normal. Donating brings you closer to the average risk level, but still below average.)
• I can no longer use aspirin and I need to watch my blood pressure more than most. But that seems to be the extent of the long-term requirements.

If you donate “undirected” you can create chains and multiply your impact

• If you give to a single person you know, and they’re a tissue match — perfect!
• But what if you’re not a tissue match with your friend? Maybe you find another pair of people: one of whom needs a kidney that’s a match for yours; the other has a kidney that’s a match for your friend. You do a swap, criss cross. That’s a lucky — and rare — find.
• An alternative is that an initial “undirected” donor gives to a stranger at the start, and then the recipient’s friend has agreed to donate to someone else. And so on — the chain builds. I’ll admit that I hoped to initiate a chain of four or more links, and instead I had two links. Still, I doubled my impact!

Image gratefully borrowed from this article from the Toronto Star

Our laws incentivize donation

• Due to an idiosyncratic legislative choice during the Nixon Administration, everyone with chronic kidney disease is deeply subsidized by the Federal Government. The Fed wants to reduce dialysis expenditures, so it pays all costs for people who want to give a kidney. I spent maybe $200 out of pocket for the whole experience, and I probably could have expensed that to UCSF had I really put my mind to it and found the appropriate forms.
• If you’re a salaried employee in California with at least 1 year tenure, you’re legally allowed 30 business days of fully paid leave to be an organ donor.
• If you donate, the National Kidney Registry (NKR) gives you six vouchers that allow someone to be moved to the front of the recipient line (one for you, five for loved ones). They do not expire, but if one is used the others are invalid. So if you already have kids, you can still ensure that if they need a kidney they will get one. Unfortunately, you can’t assign a voucher to a future/potential child, which is something I’d like to lobby the NKR to change.

My Path to Donation

In October 2018, I typed my contact information and biographical details into the NKR’s intake form. A few days later a nice young man called me, confirmed some of the elements I’d read in the Dylan Matthews article, and laid out the probable next steps.

Throughout he reinforced two things:

1. They wanted me healthy more than they wanted a new donor: If there was a question about the safety of my donation, they would default to aborting the procedure.
2. You can always opt out: Taking steps forward did not mean I was committed. Up to the point I’m anesthetized in the operating room, I can remove my consent and there would be no hard feelings.

Both of those promises were fulfilled by my overall experience in the program.

First there were a lot of tests. Countless vials of blood drawn at various Quest Diagnostic locations, and the collection of 24 hours of urine in a big jug (my roommates were not super happy to have a jug of pee sitting next to the toilet for a day, but they survived).

My results were generally good, but they surfaced something I was already aware of: I have low blood iron. It’s not the level of anemia that requires medical intervention, but it has stopped me from donating blood.

My contact at UCSF recommended we confirm that there wasn’t some underlying, concerning reason for this (such an internal bleeding in my digestive system). In Q3 of 2019 I had an endoscopy/colonoscopy performed. Under general anesthesia, a tube with a camera probed my digestive system from both ends (presumably they washed the camera in between). The result was that my digestive tract looked great; I just happen to have lower-than-normal hemoglobin levels.

I wasn’t concerned about all these extra tests adding to my timeline, because in December 2018 I’d started a new job, and I didn’t really want to take a significant amount of time off in my first year. But by the end of 2019 I was feeling settled in my role, and the anemia results had come back fine. I decided to start moving forward, and talked to my manager about how I would need to take a month off work at some point in the next year. They were supportive and encouraged me to move forward.

In December 2019 I went in for a full day session at UCSF — tests, scans, and meetings.

• A social worker made sure I wasn’t being pressured into donation, and confirmed that I had a good support system for my recovery.
• A psychiatrist interviewed me to make sure I was doing this for good reasons (not as a cry for help / part of a manic episode / etc.), and talked through some common psychological reactions to donation (e.g. “how would you feel if you found out the person who receives your kidney continues to make bad decisions that impact their kidney health?”).
• The surgeon sat with me to describe exactly what they’d do.
• Throughout the process the team was friendly, approachable, and never downplayed the risks of donation, even if they are statistically minimal.

The review board looked carefully at my case, and determined I was healthy enough to donate. In March 2020 they gave me the official greenlight, but the growing pandemic made me wary to visit a hospital unnecessarily. Soon I started a new project at work (I am a consultant and usually have 3–6 month engagements), and didn’t want to leave it. In October 2020, the project was winding down so I reached out again and indicated I was ready.

I had been told that I should give them a 2 week window for my availability, beginning at least two weeks in the future. So in late October I told the NKR that I could donate from November 9th to 30th, and they should look for a match. This matching process took much longer than I expected. There’s a real element of chance, especially if you’re trying to create a chain of donations. They were always clear that I *could* come in immediately if I didn’t care about having a chain, and just wanted to donate to a single person. But the chain mechanism had always been a key part of the value proposition, so I held out.

November turned to December. I was lucky that as a consultant my schedule was more flexible, but I can imagine it being a problem for others if they built a schedule around a 2 week matching process.

Hypothetical Becomes Real

Then in early January 2021, UCSF called and said they’d found a chain of two. I would donate to someone in NorCal, and then that person’s friend would donate to someone in Minnesota. Two links is more than one, and I was a bit tired of waiting, so I said yes. We agreed on a surgery date of January 20, Inauguration Day.

My company had been involved from the beginning, and was incredibly understanding. I work for a national consulting firm that has regional satellite offices. They continued to pay me during my recovery time, both because it’s in their company culture and also California state law requires them to. My project team was incredibly flexible and supportive of my choice, and I appreciate that deeply.

I had very few preparatory actions before surgery. A laxative for 3 days before, and fasting from noon the day before surgery. At 5AM on Wednesday my partner drove me to UCSF and dropped me at the gate. Due to COVID restrictions, she would not be allowed to visit me throughout.

The staff was warm and welcoming, and walked me through a variety of intake questions. Everyone was quite serious. At some point the lead anesthesiologist, Dr. Gupta, came in and asked if I knew what I was doing today.

• Me: “I’ve got too many kidneys, they gotta take the extra one out.”
• Her: [concerned look] “No, that’s not right, it’s…” [looks at chart and then gets it] “Ah, yes.” [winks]

Soon they were wheeling me to the OR, and everything became incredibly vivid. I’d been thinking of this purely as a hypothetical, partially because I didn’t want to be too disappointed if I was disqualified at a late stage. But it was rapidly becoming clear that we were really doing this.

They lifted me from gurney onto the operating table, and Dr. Friese gave me a final chance to opt out. I gave him the thumbs up, the mask went on, my skin began to tingle, and suddenly… blackness.

Aftercare

I awoke in waves.

Prior to surgery, they’d put a nerve block on my torso, so I couldn’t really feel anything there. But I felt weak and beat up. In a couple hours (or minutes, from my perspective), they wheeled me to a private room in the transplant ward.

This was at about 1PM. Thus began the hardest part of my experience. I hadn’t eaten for over 24 hours, but my digestion system had been pharmaceutically disabled, so I couldn’t eat or drink. The nurse eventually let me suck on some ice chips, which were as sweet to me as Gatorade to a marathoner. By 6PM my labs indicated that I wouldn’t need to return to surgery, and I was allowed some chicken broth (possibly the greatest meal I’ve ever had).

I fell asleep shortly thereafter, and the next 12 hours are a daze, with periodic interruptions for vitals readings, and a visit from Dr. Friese to let me know my kidney had been successfully transplanted into the recipient. By the morning I was cleared to order breakfast from the hospital menu.

The time in the hospital was not great. I was dazed throughout, but my shoulders felt like there were spikes through them. To operate laparoscopically, the docs pumped a bunch of inert gas into me, blowing my torso up like a circus tent. That gas needs to be reabsorbed into the body, and apparently it happens through the joints and major muscle groups, largely in the back/shoulders. I overall felt like someone who’d been in a pretty bad car crash. That feeling faded pretty quickly, but I won’t say that the first 48 hours were fun.

Drugs help! The hospital system is moving away from opioids (there’s no “press a button and get a dose” anymore), but still made sure I was feeling okay. Particularly in the first day or so, to make sure you’re moving and walking and stretching your body.

The criteria for being discharged was clear: walk 12 laps around the floor (cumulative equivalent: 1 mile), and have a bowel movement. I achieved both by Friday afternoon, and my partner drove over and picked me up.

Once home we watched Paddington 2 (it’s great), and went to bed. That night was *bad*. I could only sleep on my back, and even breathing hurt. My shoulders were acutely in pain. I had taken a couple Oxycodone before bed, which lowered the amplitude of the pain. But it was not fun. I slept only a couple hours, but mostly I was staring at the ceiling trying not to move. I’m very glad my partner was there and reassuring / helping me, I don’t think I could have handled it alone.

By the morning, things had improved. Getting out of bed required 8 steps, instead of 12 . I spent the day eating congee and watching the first season of Heroes. I went to bed at 6PM and slept 14 hours straight. When I awoke on Sunday, getting out of bed required only 5 steps. And so it went. Every day I had half the pain of the day before. The opiates ended after 4 days, and the tylenol after 7.

Now I’m 2 weeks past it, and feeling all right. I’m weaker than before. I sleep 10+ hours a day, which is much more than normal. My side hurts if I sneeze, and I wouldn’t be effective in a fight or flight situation right now.

But that’ll pass. In a month I’ll be back to normal, but the recipient of my kidney might get 10 extra years of life. Seems like a solid trade.

Could this be right for you?

For a long time before my donation, I didn’t know if I wanted to tell anyone besides my family. It seemed less altruistic if I was getting social capital from friends’ awareness. In the Sermon on the Mount, Jesus warned “not to practice your righteousness in front of others to be seen by them”, and he had a point.

But I realized that I started this journey because of Dylan Matthews’ blog post. If by talking about my experience I nudge just one person toward doing this, that’s more important than my satisfaction in secret altruism. Now that I’ve gone through this process, I feel confident recommending it (assuming you are cleared by the review board and lucky enough to have a work situation that allows you to donate).

So, what can you do?

1. Reach out to Waitlist Zero to talk about donating your kidney
   As I detailed above, it’s easy to start the application process, and you can opt out at any time. If you’re sure this isn’t for you, you could share this article to people who might be eligible and interested. If you’d like to ask me any questions about my experience, please reach out!
2. Help me lobby the NKR to make their vouchers assignable to unborn / potential children
   One of my big mental obstacles to donation was the idea that I was saving my kidney for a future child. The NKR does not allow you to assign vouchers to unborn/unconceived people, and I think it would improve the value proposition if they did. I’m just at the start of my outreach to them, but if you have any contacts or strategic suggestions I am all ears.

I’m really glad I donated my kidney. I don’t feel saintly or a deep well of satisfaction that overwhelms all my other self-doubts, guilts, or neuroses. This wasn’t a karmic cure-all. But I do feel like I took a concrete positive step in the world, and gave something I didn’t need to someone who does.

Maybe you can too!