My experience as I consider becoming an altruistic kidney donor

Lynne Coughlin Samson, Executive Director and CEO of HelpHOPELive

Lynne Coughlin Samson, Executive Director and CEO of HelpHOPELive, recently decided to consider becoming an altruistic kidney donor. In honor of National Kidney Month and World Kidney Day, Lynne has offered to share her first-hand perspective on the donation process.  

When an altruistic kidney donation is directed that means an individual is donating their kidney to a specific patient, most commonly a relative or friend. A non-directed altruistic kidney donation is when an individual volunteers their kidney to start a chain of kidney swaps, helping patients whose loved ones may not be a compatible match. The National Kidney Registry has developed a powerful algorithm to match those who need kidneys with non-directed donors.

Years ago, I began to consider making an altruistic kidney donation to a friend’s son. I had always kept this possibility in mind, as his own parents were not a match. However, he is now an adult with children of his own who are likely much more viable donors.

Recently I began contemplating becoming an altruistic non-directed kidney donor. I see it as a way to share my gift of good health and to support those in critical need. I have an honest intent and am working to find answers to all the important questions I have about the process. And there are some tough questions to consider. What are the chances this could compromise my own health? How will my decision affect my family? What if my loved ones need me as a caregiver in the years ahead, and could complications related to my kidney donation limit my ability to fulfill that role?

As a first step towards making an altruistic kidney donation, I met with the nursing coordinator at Jefferson Hospital in Philadelphia. She was well prepared to answer all of my questions about pain, how my kidney would reach a recipient, length of recovery, risk of death, complications, preparation, tests and insurance coverage. She took me through the process step-by-step from the medical and psychological assessment, to meeting with a nephrologist and the transplant surgeon. I was pleased to learn that my surgeon might be a woman urologist specially trained in transplant.

It turned out that the paperwork was relatively easy, and there was no need to bill my insurance company since costs are covered by a special fund for altruistic donors. It was at this stage that I took a hard look at this decision and asked myself some important questions. Will this decision compromise my health? How would I feel if my recipient died soon after transplant? Not great, for many reasons. How will I handle the pain? These questions reinforced the essential need to be informed about the facts and to assess how I really felt about this decision. But at some point you just need to trust your instinct, and mine said to continue the process.

The first test – a renal ultrasound – was uneventful, though the gel was cold. The technologist explained that they were looking at the size and general health of my kidneys and bladder, including whether any fluids were backing up into the kidneys and if there were any kidney stones. Next were blood tests.

In the “no good deed goes unpunished” category of doing something nice for others, blood tests were a bit of a challenge. The medical center I chose for the tests was near my home. An overworked receptionist tried to be helpful but had no idea what to do with my paperwork, which was necessary for the tests to be billed back to the donation center I was using. As I was providing her with more information, the lab began filling up with people arriving for their own blood work. They were very patient, and from my discussions with the receptionist they also learned why I was there. Soon I was leading a mini-tutorial on the issue of kidney donation! At least now six new people have learned about this option to help others.

When it came time for my blood to be drawn, my new friend the receptionist was a great “stick,” meaning she was able to get nine tubes of blood (!) and one urine sample with minimum pain and fuss. After that I was on my way, leaving behind a rainbow assortment of color-coded test tubes. I also learned about the next step – collecting urine samples for a full 24 hours. I am planning to do that on a Sunday when I will be home all day!

As I continue on this journey, I will keep you updated. But more than anything I feel confident that the decision to donate an organ is part of the fabric of being human, and another reflection of our mission at HelpHOPELive. There are so many ways to help each other. It might be individually with a kidney, or as a group by supporting the work of organizations like ours. In whatever way works for you, we certainly hope you will join in the effort to help others.

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