Living Kidney Donation

This year, I got evaluated to donate a kidney, and was declined on medical grounds. Here I look back on my reasons for considering it, my experience with the process, and my views about this in general.

Why

Organ donation is very popular in the US. Apparently more than 90% of Americans are in favor of it, and nearly 60% are registered organ donors. The registration, often marked on their state ID or license, is a consent to be a deceased donor – that in the event of the person's death any viable parts may be used to save other people. But the likelihood of their organs being utilized this way is less than 0.3%. The reason is that after most deaths, organs deteriorate rapidly, and a successful transplant from a deceased donor is the outcome of a series of rare events starting with "brain death", which is itself very uncommon.

The demand for organs is greater than the supply. Scientists have been steadily making progress bridging that gap. First transplants from deceased donors, then from living donors. Among transplants from living donors, first from those who are genetically related, then from family and friends, then from anyone who matches certain criteria, then using paired and chained exchanges to increase the likelihood of matching. Each development has expanded the supply pool, especially for kidneys. Today living donations make up nearly a third of all kidney transplants in the US. Recipients are also found to have better life outcomes from a living donation than from any other currently known treatment including a kidney from a deceased donor.

I first came across living kidney donation about three decades ago, in a Chiranjeevi movie called విజేత, and since then must have run into it a few other times. But I started thinking about it in 2017, after reading journalist Dylan Matthews's article about his own experience donating a kidney to a stranger. I recommend reading the article or watching this video where he talks about it.

I didn't need to be convinced that this is a good idea, but the article impressed on me how much progress has been made in safely transplanting kidneys. I promptly put it in the back of my mind. Occasionally I would read about exciting developments, like the kidney transplant from a pig, or companies working on 3D printed organs, and always have two thoughts: first, that this will all be solved for good in a few decades; second, while that is going to be great for me should I ever need a kidney, patients on the transplant waitlist today don't have the luxury of time. I kept hearing about people who donated a kidney, including to strangers, like Josh Morrison of 1DaySooner, Alexander Berger of Open Philanthropy, writer Virginia Postrel, writer Dawn Dorland, filmmaker Penny Lane, actor Francia Raisa,… Each such story was a reminder that I should seriously consider doing what I already think is a good idea.

Most people can live normally with one healthy kidney. Kidney failure is relatively uncommon, but the prognosis of those who do have it isn't great. Dialysis can help, but it is expensive and excruciating. Here is one description. A transplant allows for a relatively normal life, often for a decade or longer.

What about risks to the donor? Living donors are becoming more common (thousands annually). Their surgery fatality rates are very low (0.01-0.03%). They can typically walk on their own within a couple of days after surgery, and fully recover in a few weeks. They are asked to avoid NSAIDs like Aspirin or Ibuprofen for the rest of their lives. They have a slightly higher risk of developing kidney failure relatively speaking, but in absolute terms it is still low, and most studies find that there are no other long-term impacts on their lives. To compensate for the risks, donors in the US get priority on kidney waitlists should they ever need one, and also get a voucher that gives priority to someone close to them. All the procedures throughout the process are free of cost, and there are options to get some ancillary expenses reimbursed if one needs.

I am relatively young, healthy, and financially well off. I have access to world-class medical services, adequate social support, and no dependents. I have flexibility at work to take time off for the surgery and recovery period, and can work from home if necessary. I am optimistic about technology, and have little doubt that treatments for diseases will be better in the future than they are today. I am in a better position to donate than most others, and probably in the best position that I will ever be in.

I felt that the benefits to the kidney recipient significantly outweighed any risks to me. We are all comfortable with certain ideas that others may not be with. I am risk averse, and not adventurous in most ways that people use that word. But I feel positively about certain donations, when I understand the risks and am able to make my own decisions. I have donated blood several times and hope to donate many more times. I signed up with Be The Match to donate my stem cells or bone marrow. I signed up to be an organ donor. In April 2020, I signed up to take part in human challenge trials with the Covid Challenge (a precursor of 1Day Sooner), though that too never came to be. Donating a kidney was another possibility in that space.

How

Thankfully no one I know was looking for a kidney, so I wanted to donate to a stranger. A non-directed transplant where they find a strong match on the waitlist. The donor and the recipient remain anonymous to each other unless they mutually agree to reveal themselves.

The first step was signing up with the National Kidney Registry and filling out various questionnaires including a detailed medical history. I think it was chiefly to rule out very obvious markers that may make one ineligible. That took no time at all, and the next day I was assigned a donor mentor.

Mentors are ex-donors who volunteer to support donor candidates. In addition to experiencing it themselves, they also have some second-hand understanding of what it is like to donate. My mentor shared her experience, from evaluation to surgery to recovery, shared various resources, and patiently answered all the questions I had.

The next morning, before going to work, I stopped at a nearby diagnostics lab for quick and simple blood and urine tests. Again, it was to rule out basic issues. The results came back within three days, and I was cleared for the next step: selecting the transplant center. I think in general NYC has excellent hospitals, but I wasn't qualified to differentiate between them, so I chose the one closest to my home.

Within a couple of days, someone from the transplant center called me to do a phone screen and explain the next steps. Unlike any other visit to the doctor I have had in the US, the scheduling for the main evaluation was very patient-friendly. I gave them a list of days convenient to me, they booked the earliest days that they could fit me in, and shared a detailed itinerary. This involved some impressive coordination across multiple departments, and would have been nearly impossible had I had to book all the appointments separately.

The first test was 24 hours of urine collection. Reading about it first in Dylan's article had made me chuckle. The center accidentally shipped 3 large containers to me which was hilarious. But the collection itself was no fun. I had to wake up earlier than my usual routine, work from home, and follow strict times on when to start and stop collecting. As the day progressed, the container grew heavier which made things messier.

On the second day, I arrived at the hospital at 7:30 AM, carrying the container. After dropping it off came blood tests. Three different people asked me different identification questions and signed off, to make sure they would be testing the right person. They drew blood into about 10 regular vials and 4 larger vials. This remains the most amount of blood drawn from me outside of blood donations. I hope one day we will really have the technology that Theranos claimed to have. The appointment was for an hour, but about fifteen minutes before and after was just waiting. This would be normal for the rest of the day.

Next stop was at the transplant institute a couple of blocks away. I reached there before they opened, and sat in the reception area reading all the pamphlets I could find. I learnt that the surgeon who had performed the first ever kidney transplant won the Nobel Prize. A technician came and walked me to a lab, took my vitals, asked a few questions, and led me to the doctor's office. Then waiting. The transplant nephrologist came in, read my file containing several filled questionnaires and test results, asked a lot of questions about various aspects of my life, asked for an explanation of why I wanted to do this, explained in detail what the surgery would entail including diagrams of where they would make incisions and what they would do using them, and risks during and after the surgery. I found this very useful, and felt a little apprehensive. Then some waiting. The transplant coordinator, with whom I had previously talked on the phone, came and asked more questions, asked for an explanation of why I wanted to do this, explained the entire process including what could go wrong or rule me out as a candidate at various stages, gave me a chance to ask a number of questions of my own, reiterated that I have the choice to quit for any reason at anytime up to the moment before the surgery, gave me some things I could read, and left. Then some more waiting. A social worker came in, introduced herself, asked me many questions about various aspects of my life, asked me about my mental health history including every time I was in therapy, asked for a detailed explanation of why I wanted to do this, asked several questions about ways in which I would handle different hypothetical situations, like my application being declined, or my kidney being rejected by the recipient's body, or either I or the recipient dying during surgery, or either of us developing complications after it, and so on, asked questions about my current support system, asked questions about whom I discussed this with and whom I didn't and why, noted down the contact details of two friends who would help me recover from the surgery and mentioned that she would give them a call. Then a little more waiting. The transplant coordinator returned back with a lot of paperwork, gave me another brief summary of the next steps, asked me to read and sign various consent forms all of which I fully read before signing, gave me a card which I was to show at any future appointment in order to not be billed for any test or procedure, and left.

Next stop, after minimal waiting, was for a quick EKG and chest X-ray.

The final stop for the day was at a radiology lab several blocks away. While waiting for more than an hour for my first ever CT angiogram, I read about them and learnt that two scientists involved in developing CT scanning techniques had won the Nobel Prize. I checked the XKCD radiation dose chart to confirm that I would be exposed to a dose far below the yearly permitted value. But it was also the highest dose I ever received, which made me a little nervous. I experienced a minor complication during the initial prep of the IV that resulted in an unexpected delay. It was followed by the injection of a contrast dye and at different times I experienced odd sensations of feeling chilly or involuntarily peeing on the table (not real), while I and the technicians monitored images of specific organs in me light up in real time. The goal was to visualize in 3D my kidneys, learn their dimensions and layout in the body along with any surrounding arteries, to collect any other information that can be useful to plan the surgery. An uncomfortable but interesting experience. The technicians were most helpful throughout the procedure, constantly monitoring me and explaining to me what they were doing and what I was going to feel at any moment.

That was the end of the second day. I had hoped to go back to work, but was too tired, which was fine as I already took the day off.

The results were released within a day or two. Five days after the full day of tests, my coordinator called to tell me that some of the results were inconclusive, and so they would schedule a different test. On the same day a donor advocate/lawyer/bioethicist who was also apparently on my transplant team, called me to talk for nearly an hour, during which he asked some of the same questions that many others had already asked me, including for a detailed explanation of why I wanted to do this.

A couple of days later I got the appointment for the final test, with very few details, to be taken in a "nuclear medicine" department nearly three weeks later. My mentor and everything I read had all prepared me to expect long delays throughout the process. Mine felt quite streamlined until that moment. I called various people to have it rescheduled for an earlier date, and failed.

Schedule-wise, the mysterious final test was the worst. It was set for 1.5 hours. But it turned out to have three steps spanning nearly 4.5 hours, with wait times in between. Luckily the building was not too far from home, so I could still work for brief periods. In the first step, a very chatty and friendly technician injected me with something taken out of a box made of lead or some such material, monitored me under a CT-like machine, and took a blood sample. In each of the second and third parts, an hour apart, he took another blood sample and did another round of monitoring. The goal of this test was to get a more accurate GFR, a measure of kidney function.

A week later, the coordinator called me, declined my application, strongly recommended that I follow up with my own physician and if necessary also see a nephrologist. Later that day they also sent me an official letter to that effect.

My story mostly ended there. It took less than two months from signing up to completing the evaluation. I later followed up with my physician, who referred me to a nephrologist. After a couple of months of wait time, the nephrologist saw the previous test results, acknowledged that some of the numbers are low, didn't find any other red flags, and suggested more tests. When I asked him if whatever we do could change the decision about my eligibility to donate a kidney he said that it was unlikely.

Shortly after that I read blogger Scott Alexander's experience donating his left kidney. His application had also been declined, but for a frivolous reason. He then went to a different hospital for a second opinion and was able to donate there. This gave me a shot of hope. Based on his suggestion I reached out to WaitListZero, a kidney donor advocacy group, talked to someone there, and then reached out to a second hospital that they recommended. I restarted another application and refilled the same questionnaires. The next day, the transplant coordinator contacted me, we went over my situation, and then arranged to share all my results from the first evaluation. The day after that she declined my application. She sat me down and patiently explained the reasons, that even though hospitals have slightly different criteria, I am unlikely to be accepted as a donor anywhere because both my kidneys are smaller than average, and my GFR is below average.

Retrospective

There are a few things I wish could have gone differently or could be better in the future:

1. I could have requested a clearer explanation from my first evaluation so that I could have avoided taking up the time of several others after that.

2. Hospital systems could be more transparent with their billing and insurance claims. The evaluation was supposed to be free of cost, and it was. But a couple of weeks after the evaluation, my insurance provider notified me that they had received and rejected claims filed for nearly 13000 USD. Neither could I locate the corresponding bills anywhere in the hospital portal, nor were any of my messages to the billing department returned. There was confusion about whether or not I should pay (I didn't). I was tempted to forward the claims to reporter Sarah Kliff.

3. Donor registries could have better file management. Instead of having to answer all the questionnaires for the second application a second time with the same website, it would have been more convenient and consistent to be able to retrieve the first file, and update it where needed.

4. Donor registries could automatically re-evaluate files belonging to declined volunteers whenever any relevant criteria change, and notify them to try again. Eligibility criteria change with time, either due to new knowledge or medical advances or regulatory whims. e.g. Until the 1980s, only genetically related people were allowed to be kidney donors, and later they realized that wasn't necessary. Until the early 2000s, the blood and tissue type were required to match between the recipient and the donor, but now even when they don't match there are ways to treat a kidney so that it can be transplanted. Until recently the CDC disallowed people who regularly travel to India and other malaria-endemic regions from donating blood, regardless of donors' medical history and doctors' ability to test and treat malaria, and then mercifully relaxed their policy in 2019, not due to any new knowledge or medical advance, but simply because they could.

5. India and other developing countries could be better at collecting all kinds of data. I came across two papers that found that the average kidney size among Indians is lower than those from rich countries, but their sample sizes seemed too small to me. I wondered whether more papers with high quality data would have shown that my small kidney sizes are just fine and I could indeed donate one to someone from a similar background. It is better to be safe in the absence of data, but I still found it unsettling.

Living Liver Donation

During the few months I was immersed in this world, I listened to a podcast called Donor Diaries, by a kidney donor, about experiences of donors. The most moving episode was an interview of Lynn Bolduc, a double donor who donated a kidney and several years later a liver.

Liver is the second most transplanted organ. A portion of it will be removed during transplant, and then it can grow back to its original size and recover most of its function. Since I was already in the donor mindset, I considered donating my liver after my kidney transplant evaluation fell through.

Kidneys can be preserved for up to 48 hours outside of a human body, so it requires less coordination; the donor and recipient teams need not be in the same hospital or even the same city. Livers however can't be preserved for long, so the donor and the recipient are operated on simultaneously in the same hospital. There are several other differences.

Compared to kidneys, there is less information and almost no advocacy for liver donation. The transplant waitlist and number of transplants for livers are about ten times fewer, and the ten-year survival rate of recipients is lower. The liver donation surgery is often underlined as a major surgery, which kidney donation is not. The fatality rate is about ten times higher. Donor candidates are asked to bring their family members along for the evaluation. Before the surgery, they are suggested to write a living will, appoint a healthcare proxy, appoint a power of attorney, etc. The recovery from surgery takes about twice as long and the risk of complications is higher. The total number of non-directed donations is very low (around fifty annually), and many transplant centers don't even allow them. Donors are prioritized on the waitlist if they need a liver in the future, but the prioritization doesn't extend to their loved ones.

Based on the information I could find, I didn't feel comfortable with a non-directed liver donation. I am open to reconsidering it in the future, and will get evaluated if someone close to me needs a liver.

Final Thoughts

When I started the process, I wished to be private about it. I discussed it only with my dad. When I learnt that my emergency contacts would be contacted before the surgery itself, I told the two friends who had to know. When taking time off for the evaluations, and discussing with my manager about the possibility of needing to take multiple weeks off, I avoided being specific. I felt that it would make things easier. But being unable to donate has been very disappointing, and raising some awareness is one thing I feel I could still do.

I am glad to have considered kidney donation, and grateful to all the people involved in evaluating me. The process felt very thorough and increased my level of trust. At the end of the day, apart from any studies we read or anecdotes we hear, a lot of this comes down to whether and to what extent we believe in the intentions and abilities of strangers.

Obviously I don't know what it is like to donate a kidney. I believe others who have donated themselves and recommend donating. Though kidney failure is not even among the top ten causes of death in the world, it still causes hundreds of thousands of preventable deaths every year. In the long-term we will need better solutions. Looking at the international rates, organ donation is incredibly rare in most of the world. For it to really make up the supply shortage, we will need drastic changes in culture, widespread availability of expert transplant teams and other medical facilities, better regulation and streamlined processes, and even then it might not scale well in large countries like India and China. I have more faith in technology. I think just as there is currently a well-functioning market for all kinds of medical stents and prosthetics, there is an untapped market for artificial internal organs that are easy to manufacture, need less expertise to implant, and are safer and more affordable everywhere.

In the meantime, I hope that more people consider donating if someone they know needs a kidney.

Thanks to Dad for having some very difficult conversations, Alex and Vishal for the support, and MCK for comments and suggestions.