October 6, 2015

The Donor’s Perspective

On March 12, 2009, at the Columbia-Presbyterian Hospital in New York, Dr. Rodrigo Sandoval extracted a kidney from my body. On the same day, Dr. Lloyd Ratner transplanted this kidney into my daughter Karin’s body. Her two kidneys were no longer functioning after twenty years of Type 1 diabetes. I will forever be grateful to Drs. Sandoval and Ratner for completing the difficult parallel procedures and for taking such good care of both patients after the operations. Columbia-Presbyterian’s helpful staff did a great job as well. In particular, I remember Nurse Wendy who was present when I woke up and later monitored our progress. Anesthesia is affecting the brain in surprising ways, and when regaining consciousness after the operation I almost felt euphoric, despite the unusually difficult and lengthy extraction of the kidney: When I saw Wendy’s friendly face and heard her say “how are you doing?” my answer was “fine, Wendy, and I’m Peter Pan”.

For me, the decision to donate a kidney was not difficult. When Karin told me about her problems with kidneys and eyes, and her fear to have to resort to dialysis, I concluded that a kidney transplant was her best option, and that among her close family members I was the prime candidate. I remember telling her so while we were walking together at a beach near our home in Westport, Connecticut, and I keep feeling good about the fact that I offered the kidney donation without having to be asked. Loving and protecting their children, isn’t that what fathers are supposed to do?

I clearly was the obvious choice as Karin’s donor although, genetically, siblings are the best choice, ahead of the parents. Karin has indeed two younger sisters, Lisa and Anna. However, asking them to volunteer ahead of me was out of the question, mostly because young women may give birth to children, and there is hardly a more stressful circumstance in life than going through pregnancy and delivering a baby. Nature has built in redundancy into our renal system, thereby enabling us to survive accidents, but going through pregnancy with only one kidney certainly increases risk, both for mother and child. Asking my wife ahead of me to donate a kidney never entered my mind. Actually, it kind of felt right to make a contribution that was almost comparable to what she did when giving birth to Karin, our first child. I know very well how hard it was because I was there and tried to help her through it.

Having answered the question of family priority, my only remaining concern was my physical fitness. Donors are supposed to be less than 60 years old and my age was 63, going on 64. Although in good physical shape, I could not be sure that the transplantation team was willing to accept my candidacy. Age increases risk of complications, and a kidney that no longer performs at a high enough level should not be transplanted.

Fortunately, I was able to pass the tests – and there were many. It was certainly a big advantage that I never have smoked in my life. However, I was slightly overweight and suffered from mild hypertension, requiring medication. My job at IBM was certainly stressful and it required a lot of travel, limiting my opportunities to exercise. Still, I was running regularly, usually 3 miles at a time, and was still capable of doing it under 30 minutes. My 15 minute stress test on February 26, 2009, was decisive: according to the cardiologist, my performance was excellent, removing the transplantation team’s concerns about my age.

In the meantime, Karin’s kidney function had deteriorated to the point that there was no more time to waste: Dr. Ratner felt it was time to set the date, and it was set for March 12. I was very much in favor of doing the parallel operations as soon as possible, for still another reason: Together with my good friend and IBM Research colleague, Ajay Royyuru, I had planned a trip to Darjeeling that would include a 5-day hike along the Singalila ridge, along the border of India and Nepal, with views of four of the world’s five highest Himalayan peaks, namely Mount Everest, the mighty Kanchenjunga, Lhotse and Makalu. Ajay and I, along with 3 other friends, had been dreaming about this trip for a long time and finally set the date of departure for May 3, 2009. There was no way I would miss this chance to visit the Himalayan foothills, so I had a second reason to get into my best shape and to get the kidney donation done at the earliest possible opportunity.

There were still important hurdles to clear, including a discussion with my surgeon, the incomparable Dr. Rodrigo Sandoval (a big soccer fan who admires the skills of Leo Messi like I do), conversations with a nephrologist (Dr. J. Crew), a compulsory interview by a psychologist, and the crucial medical imaging of my two kidneys by means of Single Photon Emission Computed Tomography (SPECT): the radio-active tracer (a Technetium isotope) is ingested and emits gamma radiation that is measured directly, thereby  permitting accurate tests of kidney function. It turned out that both kidneys performed at a good enough level, and the team felt that my mental health was strong enough to move forward. Needless to say, our family that has always been very close, provided the best possible support ahead of and after the procedure. My wife Ulla has always been at her best in crisis situations and our youngest daughter Anna is an extremely caring and good-hearted person. Finally, our second daughter Lisa, who is living in Barcelona, Spain, and was actually pregnant with her second child, made the trip to New York and teamed with her mother and little sister Anna through the difficult time during and after March 12, the day of the operation. Lisa is as strong as a rock, in particular when her family is at stake.

For my wife, the hours of waiting on March 12 must have been particularly difficult. We left Karin’s New York apartment at around 6am, my anesthesia was performed around 9am, and it took until 4pm before Drs. Ratner and Sandoval informed my wife and daughters about the positive outcome of both operations.

My recovery after the operation was quite quick. I did not experience much pain and was released from the hospital into my family’s care quite quickly.

Karin, however, had to struggle much harder, because the newly inserted kidney needed a few days of adaptation before it started doing its job. We were all quite nervous during this waiting period, it would have been such a disappointment to go through what we did together and then having to accept failure. However, the medical professionals at the hospital assured as that we needed to be patient and that it was quite normal to experience a delay in the startup of a newly transplanted kidney.

Finally, “Pisse-Nisse[1]” started working, Karin started feeling better, and our family was back to having fun and making jokes.

Karin’s recovery was much slower than mine, but she soon felt better and stronger than during the weeks prior to the transplant, when her kidneys no longer performed the important functions of cleaning the blood and regulating blood pressure. She was able to get back to her work at Johnson & Johnson, where a great number of very nice colleagues had rooted for her and sent her beautiful flowers during her recovery at our home in Westport, CT.

As to myself, I went back to work after less than 2 weeks, started running on March 28, and participated in a warm-up hike for our Himalayan trip as early as April 12, one month after the operation.

On May 3 I boarded a plane to India and arrived at Darjeeling on May 5, along with Ajay and friends. It was a wonderful experience hiking the Himalayas. Dr. Sandoval had told me that there was a good chance I could do the trip and I did not want to disappoint him.

On the first day of the hike from Darjeeling to Sandakphu and Phalut, on the Singalila Ridge, we arrived at a Buddhist Monastery. I purchased the largest candle and a young monk lit it for me. Figures 1-4 below show how our hiking team, a young monk at the Meghma monastery, and how I held a picture of Karin and myself next to the candle. My friends and the monk joined me in praying that Pisse-Nisse would like his new home and do his job faithfully for many years to come.

Starting in 2010, every year on March 12, our family is getting together and celebrates Pisse-Nisse day by eating well and drinking well. Pisse-Nisse thrives on water, so he always gets lots of water on his anniversary. We have done it 6 times so far and I sincerely hope we will continue for many more years. Lisa is not always able to join, but we talk to her and use “What’s Up” to send her our pictures and to receive hers and Ingrid’s and Octavio’s and Busolito’s[2].

So far, I have talked about the deeply personal part of my kidney donation.

Let me add a few thoughts about the current system in the US (and most other Western countries), and what could be improved to deal with significant organ donation bottlenecks.

Many patients experiencing kidney failure have to receive dialysis. They are unable to receive a kidney donation because there are not enough potential donors. For ethical reasons, it is not possible for patients to pay donors for their sacrifice. The most frequent source of organ donations are therefore the relatives of patients.

There are other countries where such ethical considerations are set aside – for example Iran – and in those countries there is no longer a bottleneck in kidney donations.

I strongly feel that new ways should be tried in the US to encourage living donor organ transplants. Instead of paying donors for their organ (as is done in Iran), ethically acceptable ways of incenting donors should be found, such as providing free healthcare, paying for a donor life insurance, etc.

In addition, I think there should be more studies done of donor health after the donation. Before my donation, I was told that my life expectancy was still about equal, that I could buy life insurance without a penalty, and that my remaining single kidney would start working harder and achieve close to 80% of the previous combined workload of both kidneys.

After the operation, there was not much follow-up. There seems to be no real interest in monitoring and studying the health of kidney donors. For example, I have not seen any research results regarding physical performance before and after the donation. In my case, I am clearly seeing a 5-10% drop in lap times when I’m running. It’s not that I mind very much – at age 64 or 70 it really does no longer matter how fast one is running a mile. However, I have not found a doctor that can give me a clear answer when I’m asking about physical performance with one kidney versus two kidneys.

Creatinine values are higher with one kidney, that’s all I am told, but how are Creatinine values related to physical performance? How are the heart and the lungs impacted by the loss of a kidney.

Aside from such second order problems that are mostly caused by scientific curiosity, I am doing very well since March 12, 2009. Some people call me a “hero”, others just tell me they would do the same, without hesitation, for one of their children. I believe them. And whenever I meet Karin and give her a hug I have this strange feeling that a part of me is inside her and I’m hoping and praying the Pisse-Nisse will do his job and continue to make me a proud father, for as long as I will live.


[1] to understand the meaning of this name (given by Lisa) you have to learn Swedish!

[2] Busolito or Octavio Jr. is her (currently) 5-year old boy, a huge FC Barcelona soccer fan like his grandfather