By Nicholas W. Stuller
On January 10th of this year, I donated a Kidney to a family member. I rarely post personal things and in kind, did not plan on sharing this. However, the more I learned about kidney disease and the significant need for donors, I decided to share my story.
My hope is that more people will consider being a living donor. By shedding some light on and demystifying the process, my goal is someone reading this will give it consideration and help alleviate the pain and suffering of someone in critical need.
To be fair, the thought of donating any part of my body, aside from a blood donation, never crossed my mind until about nine months ago. Like almost everyone, I’ve been aware that live organ donations of Kidneys and Livers has been long performed, but I have not known anyone directly or indirectly that has gone through the process.
In the spring of 2021, both my wife and I read the Facebook post of Mike, the husband of my niece Victoria. He wrote that his father Scott was in need of a kidney donation. I had only met Scott on a few occasions, and did not recall he had serious kidney issues. As I read the post, I immediately thought to myself “that’s horrible, but I’m sure with their extensive personal network, a donor will come forward fast”. My wife and I talked about it and she actually wondered out loud if she should look into donating. I very quickly said no, you just started a new job, don’t have the work flexibility to do this, and after all, they have a big network and assumed someone in their network will come forward quickly. I was quite wrong on the latter point.
In May, another Facebook post was written by Mike. This post was quite different. It was impassioned and made the direct point that if a donor did not come forward soon, his father’s life was soon going to be much shorter, and of greatly reduced quality by being hooked to a dialysis machine three times a week. Scott is only a few years older than me, and has two grown sons with young toddler grandchildren. After doing some research, I Iearned that 17 people die each day waiting for an organ transplant, with the current waiting list over 107,000 according to our Health and Human Services.
Being a later-in-life parent myself with a six-year-old, and also one who lost his own father at the age of nine, it struck me as a travesty that someone so relatively young should be faced with such a prognosis, so I figured the least I could do was check out the link they provided and see if I’d be a match.
After spending 30 minutes completing the online form, the system told me I was a match at a high level. The next step was to speak with the hospital’s transplant center that was coordinating all of this. I heard back from the hospital and we set up the first of many calls and in-person meetings.
In the first call I learned the most important points for any potential donor: the risks to me, and therefore my family. In short, the risk is the same as any other procedure where you undergo general anesthesia and have something worked on or removed, for example, the removal of an appendix. There is no greater risk of ailment, including Kidney failure than any other non-donating person. In fact, if I were ever to have Kidney failure, as a past donor I would go to the head of the list for a new Kidney. But to reiterate, there is no statistical risk over any other procedure, or other risk to health.
Your remaining Kidney will grow some to accommodate greater demand. Most importantly, life expectancy as a donor does not decrease. The only life style change I’d have to make is my choice of painkillers in the future had to be limited to Tylenol, as the others are too much on Kidneys.
To be clear, all through the process the doctors from the transplant programs reminded me that this is a serious operation and like all operations where general anesthesia is used, there is risk. Something could go wrong on the operating table, or some ill effect could occur years after the procedure.
While I trusted the information I was receiving, I began to do my own research in parallel. In terms of life expectancy, according to the Mayo clinic, which is unaffiliated with NYU Langone doing the transplant work, life span is the same for Kidney Donors as anyone else. I even found one report that showed that Kidney Donors lived a little longer! They attributed this to either being a statistical anomaly in that if you are healthy enough to donate, you’ll live a little longer. Or they opined, it could be the endorphin effect, that the feeling of helping another in such a way had permanent effect.
Another thing I did early on was re-read VERY carefully my insurance policies. I read them over looking for any hint of the carrier not paying out should disaster strike. Thankfully there was no exclusion for being a Kidney donor or for any elective surgery, so my family would be fully covered if something went wrong.
Once learning all of the above, we agreed to proceed with the Donor application process. This was a many-months long process of lab work and an examination of my physical health and mental health to see if I was able to go through the process. The NYU Langone Medical Center, Living Donor Program in New York was doing this procedure and was the central group I communicated with.
The program took exhaustive blood tests, heart examinations, chest x-rays, and of course Urine tests. Notably, I had to produce a gallon over 24 hours and bring it to NYU in one trip. I think the most nervous I was, was due to that two-hour drive to NYC praying that gallon jug would not break all over the back of the car!
Surprisingly they also assigned psychiatrists, case workers, social workers and advocates to make sure that I was making the right decision for me mentally and from a life-style perspective. As I learned more about the process over the months, I understood that the medical profession, despite the benign statistics, is partially conflicted about the concept of removing a healthy organ from a healthy person and giving it to another. Their process, which almost seemed like they were talking me out of it, made sense when I understood this perspective.
The Langone team well prepared me for a variety of recuperation scenarios. This ranged from not being able to work for 30 days, to being back to work the next day. Everyone is different and of course there can be unexpected things that occur that can change things. There were a couple of curveballs during my process and the actual operation, but nothing material.
It took many months to get the official word that I was approved. We quickly picked a date for the surgery and Langone scheduled one last battery of tests to make sure nothing changed with my body during the process.
On January 10th, 2022 I went to NYU Langone for an early morning surgery. The surgery took about four hours, and was a complete success for Scott and me. Like nearly all these days, it was a minimally invasive procedure with three small incisions of an inch, and a 4 inch one below the belt line to remove the kidney. Later that day I was able to tell my wife that I was fine. Per normal procedure I stayed in the hospital until the morning of the 12th. During that time, they made sure all was fine with me and I was walking, eating and the kidney was functioning normally. I can say with confidence that the care from start to finish provided by NYU Langone was the best I’ve ever received, by far. Not one complaint on any part of the process.
I was able to get a little work done during my stay, but was tired and of course quite sore. People have asked me what the pain is like and for me it was like doing the most crunches I’ve ever been able to do, then doing a lot more until you feel like you broke something. Scott was a few rooms down the hall from me so we got to take some daily walks together, which was great.
It has now been nine days since the surgery and each day I am getting closer to normal. I work most of each day, the pain and discomfort less as I go on. The only restriction I have for the next 30 days is I am not allowed to pick up anything weighing more than 10 pounds, and no strenuous cardio, which I am not quite ready for anyway. I have been in touch with Scott every couple of days and he told me he feels better now with the new kidney than he has in many years. As one can imagine, it is an amazing feeling to know I’ve been part of his new lease on life.
If you are a reasonably healthy person, I encourage you to at least go to the websites I’ve shared to investigate being a Live Donor. I am also happy to speak with anyone directly who has questions about the process.
While it is certainly a serious thing to consider, so is playing a role in directly helping someone live their fullest life.