Why I’m donating a kidney, and why you should consider donating as well

Jeremiah Johnson
Jun 3, 2019 · 6 min read
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(edit July 1st: I’m home recovering and doing well. Also doing an AMA on reddit on July 1st— check it out here)

On June 25th, I will be donating a kidney. I’m not donating to a person who I know, but donating to a stranger on the kidney waiting list. I’ve been thinking about this for about a year, and I eventually became convinced it was the right thing to do. I’m writing this post to explain why I’m doing this, and why I think you should consider doing it as well.

I’m not the first to write this sort of article, and I probably won’t do it as well as those who’ve done it previously — see Dylan Matthews in Vox or Tom Ash in the Effective Altruist forum. But I do want to add to the chorus of voices encouraging kidney donation, because sometimes a little extra push is helpful in making a difference.

The basic argument is pretty simple, and can be broken down into three main points:

  • Kidney disease is a serious problem
  • Living donations produce extremely large benefits to recipients
  • Living donations are very safe for the donor

Kidney disease is a serious problem

Kidney disease is a silent epidemic in the US. It kills three times as many people as all homicides put together. Kidney disease kills more people each year in the United States than car crashes, breast cancer, or suicide. More than 100,000 people are currently on the kidney donation waitlist, and there are tens of thousands more who could benefit from a donated kidney but haven’t even joined the waitlist (as it’s so long). Despite this, kidney disease gets very little media coverage compared to the above issues.

On top of the raw death counts, life with End Stage Renal Disease (ESRD) is often short and awful. Dialysis is miserable and often steals your ability to lead a normal life. It’s a procedure that saps all your energy and takes 3–4 hours, and must be done 3–4 times per week, every week, or else you die (and it only replicates about 10% of normal kidney function). It’s hard to maintain a job, personal relationships, hobbies or a normal life while on dialysis. Survival rates on dialysis are grim. 20–25% of patients on dialysis die within a year, and only about 1/3 of patients will survive five years on dialysis.

Living donations produce extremely large benefits to recipients

The worst part is that for so many, these deaths are completely preventable. While there are some ESRD patients who are too old for surgery or too sick to help, the majority of ESRD patients can easily extend their lifespan with a donated kidney. Our best estimates show that tens of thousands of people die every year needlessly, when they could have been saved by a donated kidney.

Recipients who get kidneys from living donors tend to get more than 10 additional years on average from those kidneys, and that number has been increasing over time due to advances in medicine and treatment (living donations are also significantly better than kidneys from deceased donors, although both are good). These years aren’t empty years either — they’re relatively healthy years and they stand in stark contrast to the horror of dialysis. A typical living kidney donation will change a recipient’s life expectancy from “Less than five years, which will be miserable” to “Double digit years, potentially decades, most of which will be normal”. If you remove from consideration patients who died for reasons unrelated to graft failure, the half-life of a living donor kidney graft that survives past the first year post-surgery is 26.6 years!

To add to the immediate benefit, living kidney donors who give a kidney to a stranger (what is sometimes called an undirected donation or an altruistic donation) can start kidney chains. Because kidneys require a biological match, recipients who need a kidney often have family members or friends willing to donate a kidney but who don’t match them and thus can’t give them a kidney. In a donation chain, an undirected donor can give a kidney to Recipient A — with the understanding that Recipient A’s family member of friend will then donate to someone else (Recipient B). Recipient B’s family member or friend then passes this along and donates to Recipient C, and so on. Anecdotally the average chain length seems to be about four or five, but there are some chains that reach dozens of donations and above. Donating altruistically doesn’t just add years to one recipient’s life — it can add years to many recipient’s lives.

Living donations are very safe for the donor

The benefits of living donation are clear. What about the costs to the donor?

Any major surgery involves risks and costs, and shouldn’t be taken lightly. But the risks from donating a kidney are relatively small, and the vast majority of donors have zero long term impact on their lives.

Kidney donation has zero direct cost, and a small but potentially significant indirect cost. Direct costs are zero, because kidney donation surgery is 100% covered by Medicare and/or the recipient’s insurance. Indirect costs include potential lost wages from time off work — the average donation surgery requires about 3 days in the hospital post-surgery, and 2–4 weeks off of work. You may also incur some travel cost or related indirect costs, although there are increasingly programs that cover these indirect costs for donors.

Kidney donation also includes some medical risk, although the risks are quite small. The risks can be categorized into immediate risks and long-term risks. For donors who do not have high blood pressure, there is a roughly 1 in 10,000 chance of death during operation (as a reference, this is lower than the rate of death during childbirth in the US). This is the primary immediate risk, alongside the ~3 day hospital stay. There is also some risk for secondary issues post surgery such as infection, fever, etc, but these risks are usually minor.

Long term, donors do see higher risk for kidney disease themselves. But this risk is small in absolute terms — donors move from about a 0.1-0.3% chance of End Stage Renal Disease to about a 1% chance of End Stage Renal Disease. The vast majority (~99%) of kidney donors do not develop ESRD. For women who donate and may become pregnant in the future, donation also increases the risk of Pre-eclampsia from 5% to 11%.

In short: these risks are real, but are relatively rare and minor in comparison to the benefit that kidney donation provides.

I have two life vests, someone is drowning without one, and it costs me very little to give them my extra life vest. I’m donating a kidney because there is a ongoing kidney disease crisis, and it’s a crisis we can fix. Donating is safe, donating provides huge benefits, and donating means I’m helping to fix a problem that we know is fixable. There is no mystery about how to solve the kidney crisis — we know how. It’s only a political and moral failure that keeps the crisis going and keeps people dying.

I hope this piece might inspire you to consider donating as well. Donating is not the right choice for everyone, but it might be the right choice for you. There are only a few hundred altruistic donations each year in the United States, and more are desperately needed. If anyone is interested in learning more about the research around kidney donation, kidney policy, kidney charities or the process of donating a kidney: please let me know and I’d be very happy to answer any questions you have.

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