On August 18, 2021, I became a non-designated, living kidney donor. This is my story.
About 10 years ago, while at Hennepin Healthcare’s foundation (Minneapolis, Minnesota, United States) as a senior philanthropy officer, I worked with the kidney transplant department on a grant proposal to the U.S. Department of Health and Human Services. The proposal, ultimately funded, focused on educating people about living kidney donation, and kidney donors are an urgent need especially among patients at that urban, safety-net hospital, which serves so many people with chronic kidney disease.
The idea of donating a kidney remained tucked away in my mind. About 18 months ago, I read more about the process. Then I contacted Cleveland Clinic in Weston, Florida, which is one of the two living kidney donor programs within a reasonable drive of where I live in Delray Beach, Florida. Then began what seemed like endless assessments of my health. (Another 24 -hour urine collection? Another hour-long drive to the lab in Weston? Another dozen tubes of blood? Sure, why not!) All along, I became more and more involved, more and more intellectually curious. At first cautious of telling people, not wanting to deal with their possible disapproval, as it became more real, I began to tell people, because I was so psyched. Two weeks before the surgery, I told my favorite cashier at the grocery store. Really.
The science of living kidney donation is so well-proven, that the donors live out normal healthy lives, almost without exception. So, doing this felt logical, and it seemed to follow the basic premise of utilitarianism: How do we maximize well-being or happiness among living creatures? I am vegan for the exact same reason: It's simply logical to desist from harming animals, and it's easy to do, with no downside.
I don't know who received my kidney. I'm a non-directed or non-designated, living kidney donor. I chose to donate without knowing a specific person or loved one in need. The recipient and I, if both of us wished it, could be placed into communication with each other. Here is what I know about the recipient: the name and location of the major medical center where the recipient received their surgery later on the same day that I had mine. I have a strong preference to maintain this anonymity. It seems important to me that the recipient not feel any obligation toward me. It would concern me if a friendship sprang up between us that was unsustainable and therefore disappointing to one or both of us. It could be that if we met each other, we’d not like each other, or we’d judge each other for our politics, values, life choices. And finally, I earnestly pray for their health, but I’m not naïve: Organ transplant patients don’t have a 100% likelihood of full health and long life, and were I to learn that the transplant failed, I’d always wonder how I might have contributed to the recipient’s decline. Thus, I choose anonymity.
Several people have asked me about the identity of the recipient. "Aren't you curious? Don't you want to know? Wouldn’t you like to talk to that person?"
Naah. I’m curious about a lot of things but somehow not about this. I value two-way anonymity for me and for the recipient. I think it ensures and protects the recipient’s dignity at the highest possible level, reducing the likelihood that the recipient will feel obligation or shame or…IDK.
If you have studied Jewish philosophy, you know that this anonymity isn’t something I came up with on my own. In his Mishneh Torah, Gifts to the Poor, the 12th-c. Jewish scholar Maimonides ascribed positive value to two-way anonymity in giving. (Maimonides’ writings in general are shockingly relevant, some-800 years after his death.)
My donation catalyzed a five-kidney transplant chain, all of which probably occurred on the same day or next day. I’ll try to explain a chain, but at the end of this post, you’ll see links to two articles that explain it better than I can.
In the U.S., at any one time, more than 100,000 people are awaiting kidneys either from live donors or from generous people who have allowed their organs to be donated after death.
Something like 23,000 people receive kidneys from one of these types of donations every year. So maybe 1 out of 4 or 5 are lucky recipients, and if all goes well, they get chances at healthier lives, longer lives, lives without dialysis.
Of those 23,000 who receive kidneys, about 5,000-6,000 receive kidneys from living kidney donors like me. Non-designated donors, like me, number several hundred each year, or about 5-6% of all living kidney donors. That’s because most people who donate are close to the intended recipient--a family member, friend, community member. If the potential donor is not a match for their loved one, what happens then?
This is where it gets interesting. What follows is an over-simplified explanation of a donor-recipient chain, using made-up names and relationships (obvi).
Let's say Gertrude wishes to donate to daughter Agnes, but they don't match.
Marin wants to donate to sister Larkin, but no match.
Gertrude and Marin will donate only if their own (“incompatible”) loved ones (designated recipients) can receive transplants. That’s where the National Kidney Registry comes in. It is a database of the biological information of potential donors and people on the waiting list to receive transplants. This database finds matches.
Well, we’re in luck, because the registry has paired donor Gertrude with Larkin recipient. But we’re out of luck, because Marin’s kidney is not a match for Agnes. This is where a non-directed kidney donor comes in: The non-directed kidney donor (that’s someone like me) is found to match with Agnes recipient. Assured that daughter Agnes will receive a kidney, Gertrude will move forward with her living donor surgery, to benefit Larkin. Marin will move forward with her living kidney donor surgery, knowing that her sister Larkin’s health will improve soon, having received a kidney. Marin’s kidney donation to someone else not mentioned in my example will continue the chain. I read of one recent chain that involved 77 donor-recipient pairs. My donation started a chain of five donor-recipient pairs, I was told by the patient advocate at The Cleveland Clinic. (She couldn’t have been prouder!)
Friends and family have been quick to laud me for my kindness, generosity, or selflessness. I have to admit, though, that I don’t have any of those qualities in abundance and often have displayed a real lack of such virtues. I did this not from love of humanity. People who do this from personal love for an individual in need are lucky to have that as a motivator. People who are non-directed donors and who do this from love of humanity are very lucky, because they feel something toward humanity that I do not.
Unfortunately for me, I've struggled with being a misanthrope much of my life. And, although I’ve been a progressive social justice advocate through my work and avocation, that’s motivated by justice rather than love for humankind.
But though humans strike me as meh, I revere the human-developed disciplines of logic and reason, as well as their corollaries, proven science and evidence-based medicine. So, at some point I learned that if person A has two perfect kidneys and person B has very little kidney function, a perfect solution is for person A to donate one kidney to person B. At that point, I was like, duh, of course. A fact is a fact, isn't it?
This was not hard for me to do. But that doesn’t mean that I think it’s therefore easy for anyone or everyone. It takes pre-existing excellent health, which I’m just lucky to have at 55, because it’s not like I’m some marathon runner who’s never eaten a cookie.
It takes time, in my case, paid days off from my prior job at Temple Beth El – Boca Raton and my current job at American Friends of the Hebrew University. That’s not something all people have in the U.S. According to the Bureau of Labor Statistics, about 78% of U.S. civilian workers have paid sick time. I work in a white collar desk job, in a comfortable nonprofit professional sphere and can use paid vacation time, too, for something I want to do. (My paid time off isn’t used up by the need to care for a sick family member, for instance, or on ensuring my overseas family can obtain refuge in the U.S., for instance.)
It takes the support and time of one’s spouse or partner or adult child or BFF—whoever is the primary post-surgery caregiver. I have a lovely, kind-hearted, giving, patient man in my life, my husband, Whitney, and he is my everything.
Above all, this really just took that indefinable thing that one might call willingness. I just wanted this experience. In recent years, having felt like I’m in chronic mid-life malaise, more commonly called the mid-life crisis, I’ve done some reading, because that’s how I begin to solve most puzzles. Seems humans are hard-wired to seek novelty, because it’s like brain exercise or brain food. According to what I read, it’s partly why a person might quit their job to travel for an extended period or volunteer in another country. Or change careers at 50. Or change spouses. It even seems to be the motivator for more ordinary actions, like a new house purchase or cosmetic surgery. I chose to do this, in large part, because I just wanted this experience. I wanted to experience the top health care (The Cleveland Clinic) as a healthy person. I wanted to take part in amazing science. I wanted to learn new things and feel new feelings.
Three months after surgery, and it’s as if it never happened—I feel that normal. Even two days after surgery, I was doing well. (See the picture to this post, taken about 48 hours after surgery. I look pretty much like my 55-year-old self, though my face is a bit swollen.) It was laparoscopic surgery, so the incision site includes three small entry points on the left side of my abdomen, plus what looks like a C-section incision several inches below my belly button. For a few weeks, around that larger site, my flesh was swollen, bruised looking, exactly as expected. My husband’s words: “You look like you’ve been beaten up.” And I did.
Open surgery, which I did not have, would have involved more cutting, thus more pain, and longer recovery. At present, the scars are three red spots and one faint three-inch line.
I was hospitalized for merely 36 hours. For the remainder of the day of surgery and the night following, I experienced mild-moderate pain and a great deal of nausea (from anesthesia). The nurses addressed both with alacrity to reduce them as much as possible. Nausea is awful, both the feeling itself and the dread of vomiting. About three hours before discharge, my nurse reviewed my discharge instructions and medications, and I asked, “What pain medication am I currently on?” She said, “two Tylenol, nothing more since last night before bed [about 16 hours prior].” I was discharged with Tylenol, a narcotic pain medication that I didn’t need, and a laxative—because it’s typical for people after surgery to experience some delay before having a regular bowel movement.
Upon returning home, I steadily resumed regular activities, more each day, though even on the second day I was able to take the stairs to ascend to our fourth-floor apartment. I took a week-and-a-half off from work, though others take considerably more than that if their jobs involve physical labor. Other donors begin working from their computers, if they have desk jobs, two or three days after surgery. During my first week after surgery, I was able to do quite a lot, with care to protect my incisions and, as with any abdominal surgery, to minimize reliance on my abdominal muscles. What I did: Light housework that doesn’t involve lifting more than 10 lbs. Cooking low-salt vegan dinners. Writing. Reading. Walking the dog. Walking without the dog. Errands with my husband.
What I did not do: Lifting anything more than 10-15 lbs., like the dog, or a basket of laundry, or a certain preferred cast-iron cooking skillet. Engaging in vigorous exercise or exercise that might test the sutures, like bicycling or a pilates session. Driving, because I was not yet allowed. It wasn’t that I was in pain, because I was not. But I was careful not to do anything to stress the incisions nor anything that might lead to a hernia.
According to all studies that have followed living kidney donors, my health and lifespan should be normal, for two reasons: (1) Donors have to be in excellent health to be approved to donate. (2) The remaining kidney will gradually but steadily learn to do the work necessary.
Closing thoughts: I read so much about living kidney donation, before and since. Blog posts. Scientific articles. Summaries from hospital sites and kidney disease advocacy groups and donor nonprofits. Here are two of my favorite articles:
https://www.insider.com/why-people-donate-kidneys-to-strangers-organ-donation-chains-2016-10
https://www.nytimes.com/2012/02/19/health/lives-forever-linked-through-kidney-transplant-chain-124.html
What I haven’t written in this piece, because they are completely other stories, are the details about the pre-surgery exams, the surgery itself, and the experience at The Cleveland Clinic as outpatient over 18 months and inpatient for 36 hours. There is much more to tell, but perhaps in a different format.
