My Anonymous Kidney Donation Story
Hi, my name is Helene (aka RKEM on the forums) and I live in Ottawa, Canada. On September 17, 2015, I donated my left kidney to a stranger. I am sending my story in the hopes that it can either help others contemplating donating or maybe inspire others to consider this possibility.
= = = = =
Donating a kidney was something I had filed away in the back of my mind while researching bone marrow donation. It just seemed too grand, too complicated, impossible almost. I didn’t know anybody with kidney disease but every time I saw a plea for an organ on the news, I was reminded of it. It was one of those “one day” projects.
Then at my workplace, there was talk of doing away with all our accumulated sick leave. I had 8 months in the bank at the time. And strangely, the thought that this could just be taken away gave a newfound urgency to the idea of donating a kidney. Like a sign that this might be the time to do this. If I was going to lose my sick days, I wanted to try and use it for something worthwhile.
At the same time, I didn’t really believe this would happen. It took me three failed phone calls to finally get the nerves to talk to the transplant coordinator. I would dial and hang up at the first ring. Then there were questionnaires and I was surprised at the “why” question and how I didn’t feel as though I had a good answer. The reaction I got from close friends, often times along the lines of “this is crazy” and “why would you do that to yourself” was also very discouraging.
But I’m a stubborn person and with each test I went through, I got more results indicating that I would be a really good donor. Of all things, it seemed that at 37 I still had two perfectly functioning, almost perfectly symmetrical kidneys, low blood pressure and only one artery on the left side. I’m a pessimist and somehow I always expected that somewhere something would derail this process, that they would find some medical reason for me not being able to donate. But maybe that was just me trying to protect myself from the potential deception of not being approved as a donor.
I kept my project secret from most people, not wanting to deal with my lack of a good answer to the “why” question. I did a lot of research and I made the mistake of watching a youtube video of a donor nephrectomy. This led to a series of nightmares in which my organs were cut randomly and my kidney being dropped on a very dusty floor, thereby rendering it unusable. But being stubborn, I watched it again and again until it didn’t make me feel queazy or give me nightmares.
Through reading and watching videos about kidney donation, I eventually heard someone put words to what I felt and to explain why I would give one organ to a stranger I would never meet. I’m 37, with a stable life, stable job and zero health problems. I’ve essentially won the health jackpot. But if it had been different, if I had been in need of a kidney and one was offered, I would not need half a second to consider if I would accept it. But the situation was reversed, I was blessed with the ability to give … and it seemed morally coherent to be willing to give what I would be so willing to accept. From that day on, the “why” became a “why not” in my head.
After about six months, a surgery date was set and strangely, from that point, I became very protective of my kidney. They say that you have to grieve the loss of your organ after surgery. I think that happened to me while it was inside me still. During those last few weeks, I felt a though I was just in charge of keeping it safe, even to the point of avoiding some family function just before surgery, on the off chance that there would be sick people there.
There was some last minute frustration with a change of surgeon and being told that I would not be able to have the main incision where I was initially told it would be. This was emotionally difficult. On the one hand, I was frustrated. This was the only thing I had requested, and I felt that my concerns were dismissed. But at the same time, I felt terrible for being so vain. Here I was having doubts due to cosmetic issues when out there someone was waiting for a life saving organ. Eventually, it turned out that my small stature made the incision I wanted possible.
During the few days before the surgery, there were several appointments and tests, with a lot of time between them. At one point, I randomly ended up in the hemodialysis waiting room. I watched for about half an hour and every patient I saw come by reinforced my conviction. All of them looked so tired and sick. Dialysis is a fantastic thing in that it keeps people alive, but that’s it. It’s not so much living as it is surviving. For maybe two weeks of pain and some risks of complications, I could give one of these people 10 maybe 20 years of freedom from dialysis. At that point I became absolutely determined to do this.
The night before the surgery, I couldn’t sleep. I spent it watching time pass by, getting more anxious by the minute. As the time to leave for the hospital drew close, it started to seem “real” for the first time. I remember feeling frustrated that the sun wasn’t up when we got to the hospital, for some reason. When I was taken to pre-surgery is when the true fear started to hit me. But there was no way I was going to change my mind, even when the nurse reminded me that I could. In my mind, I couldn’t. Someone was out there, waiting for that kidney and I wasn’t about to disappoint them. In my head, signing that surgical consent was a promise of sorts. I have many character flaws, but I really take promises seriously.
It took me forever to change in the gown because my hands were shaking and I’m pretty sure my stress contributed to it being so hard to start an IV on me. When they came to take me to the operating theater, I had the worst panic moment of my life. I asked for one last bathroom break, but it was just an excuse to be alone to regain my composure. My boyfriend started to tear up when they came, and so did I. It was the hardest hug to let go.
Then I was wheeled in a dimly lit, deserted hallway. It honestly looked like a horror movie set. My gurney was near a window and got to see my sunrise. It made the time pass more quickly. The operating room was equally terrifying. I saw some of the instruments, which looked like very long needles. I was also surprised at how many people were in there. Thankfully, I wasn’t awake for long to contemplate the star-trek like operating room and quickly drifted to sleep. I woke up being wheeled into recovery, shivering. I remember the beeping of instruments, those plastic booties inflating and deflating, then a blissfully warm blanket. I was amazed at how little pain I was in. I felt like I had done too many crunches while on my periods. I was also more alert than I expected. Tired but coherent, at least enough to phone my very surprised boyfriend, less than 2 hours after surgery ended. I spent most of the day in recovery, due to hospital room shortages. Standing up that evening was scary and sent my heart rate though the roof but I managed it without too much pain. In the afternoon the surgeon came to tell me that the transplant had worked. I was so relieved. None of my crazy kidney dropping nightmares had come to pass.
Recovery in hospital was honestly way easier than I expected. The only complication was a mild abrasion on an eyeball, of all things. I was off the pain pump within 24 hours and I was able to get in and out of bed and walk on my own after about 24 hours. Getting fit before the surgery definitely helped. You can’t really use your core after surgery so having solid arms and legs makes all the difference. The gas was definitely the worst of the pain as the incisions were fairly numb.
While in the hospital, I was visited by the coordinator who informed me that the recipient was still doing well and that the kidney was working overtime and quickly cleaning their blood. I had a weird “I’m so happy I don’t know why I’m crying” kind of moment. Maybe it was the enormity of knowing that all this crazy project had finally worked that hit me.
I opted to stay a day more as I was going to be on my own at home but 3 days after the surgery I was definitely ready to go home. I stopped the opiates the day I got home and found that the tramacet was responsible for the worse of my symptoms. Then I only needed a week of a small dose of tylenol before stopping everything. My main motivation for stopping the opiates was also to alleviate the constipation, second most annoying thing after the gas.
Recovery felt slow and for the first few weeks I felt weak and dizzy. Daily tasks like showering were scary and I lost maybe 10 percent of my body weight because the food would swell my stomach leading to a lot of pain. But overall, it was a million times easier than I expected. I had braced myself for the most agonizing pain of my life. It was nowhere near there. I was in more pain when I cracked a rib a few years back. Nobody is going to believe me but really, in all honesty, it doesn’t hurt that much.
After six weeks I went back to work, but I could have gone after four. I did my first push-up after three weeks and slowly worked my way up (shhhh … don’t tell the doctors :P) I think it all comes down to listening to your body and stopping if it hurts. Two months in and I can run, jump, do kettle bell workouts and my energy is what it was before surgery. There is still a bit of tenderness and sometimes twinges of pain here and there or swelling up if I am very active, but otherwise, I’m back to my old self. With a few pounds off. Also, totally weird side effects is that this has changed how I feel the urge to go to the washroom. Which I’m oddly happy with. I pee just as much but “holding it” is easier … maybe because the signals that you need to go aren’t as strong. I know shortly after surgery they were completely absent.
Sometimes I think about the health risks down the road, but even as I contemplate that maybe when I’m really old, my lone kidney might fail, I still think it was the right thing to do. When I am 90 something, a few months more or less of life, likely ill with other conditions to begin with, will matter little compared to the hopefully numerous years my recipient will get. I’m also pretty certain that 40 years down the road, kidney disease treatment will have improved substantially.
People often ask about the recipient and “what if this person doesn’t take care of the kidney”, “what if they go on a drinking binge and destroy it”. Truth is, it doesn’t matter to me. It’s a no strings attached gift, for them to use however they want, hopefully doing the things that make them happy. People call it utterly altruistic, but it’s not just one sided. I don’t need a card, a medal or even to be updated how they are doing. I have my scars, they are my little badges of badassness. I also find it amazing that part of me now lives (and pees :P) inside someone else. How many people can say that?
In the end, my reward is knowing that I was given the opportunity to change someone’s life for the better and that I went through with it. It taught me a lot about myself, my ability to face fear and pain and gave me a new appreciation for my own good fortune and health. Overall, it was an amazing, life affirming experience. I would do it all over again. Ten times if I could.
And that is my one and only regret: that I wasn’t born with 3 or 4 kidneys to be able to help more people.
If anybody has questions about the donation process as an anonymous donor, please feel free to contact me at firstname.lastname@example.org.