Ten years ago on December 11th, 2009, I got to be a hero. I was not thinking about it that way, at the time, but it’s true. I had the most amazing opportunity ever – to volunteer for one singular act of donation that caused me no long-term harm and, literally saved my friend David’s life. I gave him my left kidney and if I had another third kidney I would do it again in a nanosecond.
David has Polycystic Kidney Disease, an inherited illness that causes the sufferer’s kidneys to turn into a big sack of mini-water-balloons. People with PKD eventually end up in kidney failure and in need of a transplant.
In mid-2009, David was at a point where his kidneys were just done; they were no longer working and he was extremely ill. He needed a transplant urgently, but the wait for a cadaver donor (a kidney for a person who has passed away) was very long.
David’s best option was to find a living donor. All available relatives were tested but no one passed the stringent criteria to become a donor. David was very reluctant to ask, but he eventually posted his need on a Yahoo group (remember those?) we both belonged to – our “Skokie Lunch Bunch” (so called because members all used to eat lunch together before our work site closed and we moved on to other jobs; we fortuitously stayed connected).
Two members of the group offered David a kidney. One was eliminated during the medical screens but I made it through. During the summer and early fall I had multiple clinic appointments to check my blood and urine. I had to have extraordinary renal function before the transplant team would consider letting me donate.
All of my tests were conveniently conducted in San Diego where I lived, even though David lived near Chicago and the transplant was to be conducted at Northwestern Hospital. His insurance paid for all of my tests – it was made very easy for me, every step of the way.
I also had to fill out questionnaires and undergo a psychological screen to make sure I was emotionally healthy enough to be a living donor. While some might say I am a bit crazy, Northwestern decided I was fit to donate.
People often ask me why I would do this. I have never had any answer beyond, “Because I could.” I never thought about not doing it. I was healthy, I knew I would be screened thoroughly, and I knew I could live a healthy life with one kidney. How could I not respond to David’s need? When making difficult decisions I ask myself, “will I have regrets if I do not do …?” In this case the answer was yes. If I did not step up, I would always wonder if I could have made a difference. And now I know I did make a difference.
I am almost 60 years old and of all the accomplishments in my life I look back at this singular event as one of the things I am most proud of doing. It ended up not being a very “horrible” experience at all. I’ll walk you through the actual transplant.
After clearing all the medical tests, transplant day was scheduled. It had to be rescheduled once, because David had some test results that needed follow-up, but a date was finally settled on. The transplant was scheduled for Friday. December 11th, also the first day of Hanukkah that year. As David is Jewish we considered this quite auspicious. I flew to Chicago on Wednesday for my final tests and interview. A winter storm was threatening travel and flights were getting cancelled and delayed, but my flight made it. We have a trail of fun emails chronicling the moment by moment saga of my journey – no texting back then, or not that I was doing anyway.
On transplant day we arrived at the hospital at the same time – very early in the morning. My oldest daughter was there as was David’s extended family. This is when I really felt the magnitude of my gift to David’s family. His two sons, wife, mother and others were there. I became overwhelmed with understanding that a mother was going to now see her son live, a wife would get to grow old with her husband and two sons would get to spend more time with their father. I was able to give this gift and I just kept thinking, “How cool is this?”
Those feelings kept my fear at bay. I was never afraid. I had undergone surgeries before (appendix, C-sections) so I knew there would be some pain, but I also knew it would be temporary. At that time I remember asking David only one thing- to make good use of my gift. (It was a bonus that he voted for the same candidates I did and would now keep voting for years to come).
I was prepped and waited for what felt like a long time. While waiting I listened to a special play list I put together for the occasion. Bill Withers’ Lean on Me was the lead song; I remember, and I still love that song.
Here I am showing 2 fingers for the number of kidneys I still have
I went in to surgery first – they want the donor kidney out and visualized as A-OK before they start the recipient’s surgery. They used a laparoscopic procedure so the incisions were not too extreme. I think I was in surgery for 3-4 hours.
David was kept “in holding” until my kidney was out and ready, then he was taken back to the OR. The Doctors told us my kidney started making pee for David before they even got it completely attached. This was a great sign that the transplant would be successful.
When I woke up in recovery I was a little worse for the wear, but I remembered I now had just 1 kidney.
I will not lie and say I felt great at that moment – I did feel like I had, well, just had a vital organ removed. I hurt and was swollen and cried a bit that night.
But I slept (I don’t usually like opiates of any kind, but, yep, I used that morphine pump). Moving wasn’t great fun, but by the next morning I was up and walking – not fast, but walking.
David was feeling very chipper the morning after surgery – or at least chipper enough to walk down the hall and visit me. My kidney was behaving very well in him. It was such a relief to see David looking better than he did before the surgery. It is true that having a functioning kidney is a good thing.
Interesting factoid – transplanted kidneys are not put in the same place a person’s original kidneys are. They are sewn in under the skin of the groin, right under where David has his had. Weird, huh? But this allows doctors to access the transplant for biopsies and such if needed.
I was discharged the day after surgery, less than 24 hours after I left the OR. Here I am on my way out – still 4 kidneys, just one in me and three now in David (he kept his diseased kidneys).
Because I could not fly home until after my 1-week check I was discharged to an Embassy Suites about a block from the hospital. AL the out of town recipients and donors stayed at this hotel. It seemed like we were about 10-20% of the hotel guests and we were quite a site down in the breakfast buffet area. Regular tourists must have thought there was zombie invasion as we post op guests shuffled around guarding our incisions.
I have to call out the hotel staff here – they took awesome care of us and I did not miss the hospital at all.
After my 1-week check I said my farewells to David and his wife, Susan and went home to my family in San Diego. My life went on normally. I kept it easy for a few weeks but missed minimal work.
I have had a healthy decade since the transplant. I haven’t missed it once and doubt I ever will. If the rare event occurs that I need a kidney transplant some day, I will be moved to the top of the waiting list – a little known perk of donating.
What really matters is that David has lived a healthy life since receiving my gift. He held true to my request and has made good use of my kidney. He retired from his corporate job and became the Chief Scientific Officer of the Polycystic Kidney Disease Association, a position he held until just recently. While there is still no cure there has been progress and at least one experimental treatment is in clinical trials.
David has had the opportunity to see his eldest son marry, and his youngest son receive his MSW. Susan and David have travelled the world, only this summer checking off a bucket list trip to Rwanda to go on a Mountain Gorilla trek. David has spent the last decade living a full life and loving his family – and I get to say that I made that happen. I was his hero and it is humbling and gratifying to know I made that difference.
How can you become a living donor?
There are many ways you can help someone in need of a transplant. You can even become a living donor, like me. David’s sister, Rachel, also has PKD and now needs a transplant. Maybe you can help?
The American Transplant Association has a lot of good information for people wondering if they could become a donor. Send me a message if you have questions – I am happy to answer.
The nonprofit organization, Donate Life describes the numerous ways to become a donor. You don’t even need to know someone in need of a kidney. Non-directed donation is possible, and you can become a hero to someone you have yet to meet. The first step can be made here.
Even if you cannot donate, and I understand there are many reasons why a person cannot, you can still spread the word. Rachel needs help finding a kidney and the more people who know about it the more likely she is to find a one.
Share this story and you can help Rachel or another person now!