What I Learned When My Kidneys Failed, Part V

Prior Installment: By the Numbers

My very existence is a fluke of scientific progress. I was born in 1952. Only 30 years before was the start of the first experiments using insulin extracted from dogs to treat, what was known at the time, as Juvenile Onset Diabetes (now known as Type I). Before that time, people who were born with this genetic misfire simply died young, and died miserably. Because evolution works slowly, this anomaly was not yet weeded out of the human gene pool.

I was first diagnosed 1n 1963, which was only 41 years removed from the first experiments with insulin therapy. 41 years is not even a blink of an eye in the entire course of human history. Yet by 1963, animal-extracted insulin was widely available for the treatment of Type I.

Lucky me.

Research on dialysis for the treatment of renal failure started in the Netherlands in the early 1940s. This research was done on the sly with stolen materials and done at great risk because the researchers worked under close scrutiny of the Nazis. The first patient successfully treated with this therapy was in 1945.

After the war, the researchers moved their operations to the United States where they encountered serious opposition, especially from the religious zealots of the time who declared it an “abomination”, not dissimilar to religious opposition to stem cell research today. Yet they pressed on.

Only 68 years after the first patient, I would need dialysis to stay alive. Again, a mere blink of an eye.

Lucky me.

The first kidney transplant occurred in 1954. The donor and recipient were identical twins, thus alleviating the rejection issues. Unfortunately, the recipient did not live long, but it was the first step.

Rejection remained a persistent problem. It was not until the 1986 that truly effective anti-rejection drugs were widely available. There have been steady improvements in anti-rejection therapies ever since.

Only 27 years passed between the first effective anti-rejection drugs and when I needed them. Again, a mere blink of an eye.

Lucky me.

To paraphrase National Lampoon’s Deteriorata: I am a fluke of the universe. I have no right to be here.

To sum up my lessons:

• Renal failure is a crappy way to die.
• Much of renal failure is preventable, through control of diabetes and hypertension.
• The need for the treatment of this condition is great, and the resources available are shockingly inadequate.
• Living donors are essential to the alleviation of untold suffering. If one is looking to make a difference, one should look into becoming a living donor.
• I have amazing friends who went to great lengths to help me when I could scarcely help myself.

But the  most important lesson that I learned is this: I learned how to receive. I am alive and healthy today because a great number of people devoted an almost unbelievable effort to get me here. They did this knowing that there was no way I could ever repay them.

First of all, is the donor who  saved my life–a person that I do not know and may never know. The English language does not have the words to describe this gift. From August 15th forward, every day that I am not only alive but more importantly, not sick, is due to this person, whoever they are.

There is my courageous and steadfast wife of 21 years, who gave up a kidney so that I could get one. Organ donation was not part of our wedding vows, but when she got the call she answered without hesitation or fear (at least that I could see).

My brother interrupted his Costa Rican sabbatical to stay with us and serve as our primary caretaker while my wife and I were recovering. He was here nearly a month-I am not sure what we would have done without him.

The nephrology genius, Dr. Chi Hsu, who had all the right answers at the right time. Keeping someone in my state healthy enough for transplant is no easy task.

The entire staff at Wellbound, who played a critical role in my care when I was undergoing dialysis. They were professional and caring, and most importantly, they were wise enough to let me believe that I was in charge. In fact, I was only following orders.

Dozens of friends cooked for us and brought us food because it would have been very difficult for us to prepare meals during he first month after surgery. There were many more who sent cards, flowers, and prayers. All of this helped get us through some very dark times.

For the first time in my life, I believe that I will live to retirement and beyond. To everyone who made this possible: you know that I am indebted to you and it’s a debt that I can never repay. No amount of thanks will ever suffice for what you have given me. However, I can make you this promise: Whatever extra time that you have given me will not be wasted.

I would like to close this series by putting a human face on what all of this means: My wife and I had the great honor of actually meeting the new owner of my wife’s kidney. It was a genuinely transformative experience.

Here is a photograph of the two of them when we met (my wife is the blonde):