The Regretful Donor and The Reluctant Donor

As another living donor, I, too, have often had some of the same thoughts and worries as Michael Poulson, the regretful living donor, soon-to-be physician. He regrets his decision, at age 18, to donate his kidney to his stepfather’s brother. His story was featured in the Washington Post October 2, 2016.

https://www.washingtonpost.com/national/health-science/at-18-years-old-he-donated-a-kidney-now-he-regrets-it/2016/09/30/cc9407d8-5ff9-11e6-8e45-477372e89d78_story.html#comments

I call myself The Reluctant Donor. Do I regret my decision to have become a living donor to my sister twelve years ago? Not every day, but maybe on some days, when my faith falters. The question, though, is would I do it again if I could go back in time, right?

I was a much older living donor than Michael was at the time of his donation. Although I danced through my life in excellent health, many of the people around me – people I loved most – suffered from rotten kidneys.

When one of my sister’s collapsed in renal failure, I knew she faced a six to eight year wait for a transplant – because the number of people listed on the UNOS waiting list for a kidney had exploded.

I blurted out that I would give her one of my kidneys and immediately regretted saying it. I was terrified of surgery, of possibly dying, and having a part of me cut out and removed.

I would never have done it without witnessing first hand the pain and heartache kidney disease causes.   I hunted and researched for long-term studies on living donors. In 2004, I could not find much of anything. But, I trusted I was doing the right thing.

A hereditary disease called polycystic kidney disease has ravaged my family. My grandmother died of kidney disease when my mother was a teenager. Then my mother lost four siblings to kidney disease. One of her sisters and Mom were both in renal failure at the same time. Sadly, that sister died after five months on dialysis.  Mom spent ten years on dialysis. She used to say she was “lucky” because medical advances helped her live.  She put her name on the transplant waiting list and after two years received a kidney transplant from a deceased donor. But the joy was short-lived.  Mom’s daughter, my youngest sister, was in renal failure then. She also received a kidney transplant from deceased donor.

That’s why I donated one of my kidneys to my other sister when she was in renal failure later. It was scary. Michael Poulson never mentions the awe and wonder involved in saving another person’s life. The miracle of life itself and the giving of oneself are very powerful.

I have harped and lectured for more long-term studies and data regarding outcomes for all living donors and am repeatedly told the cost is prohibitive. Why? Living donors save Medicare millions of dollars keeping patients off dialysis; many recipients return to their jobs and contribute to society.   I’ve spoken to my elected leaders for the Living Donor Protection Act to be passed.

I’ve met and spoken to many living donors. One comment often heard is: After we become donors, when we do have a medical issue of our own, in the back of our minds is a nagging concern and worry that it is because we gave away one of our kidneys. There is the risk of our blood pressure running higher because we donated a kidney. It rises as we age, too, so it is critical to know these facts. Risk of hernia is another risk for living donors. Living donors are now cautioned not to use NSAID’s after donation. A difficult cross to bear for life if one has migraines, arthritis or other aches and pains.

At this point in time because it’s what modern medicine has right now, living donation was the best option for my sister and me. Soon Poulson will soon be entering the medical community and perhaps he can use his voice and experience as a living donor to highlight these issues:

• Living donors save Medicare thousands of dollars by keeping the recipient off dialysis. Why ISN’T funding available to follow the long-term outcomes of living donors????????
• Why has it taken so long for the medical field to improve and redesign dialysis machines?
• Why aren’t doctors compensated better while doing research to find cures for diseases?
• As a physician, Michael Poulson can go to Capitol Hill and meet with his senators and representatives about the Living Donor Protection Act (HR 4616 and S.25840 and ask for long-term studies and NIH research on kidney disease.
• Help formulate a well-planned follow up care program for all living donors to have for the rest of their lives. (I am in the process of writing an article on this subject right now.)
• There is absolutely NO common sense in the fact that Medicare covers dialysis but not the immunosuppressive drugs needed to keep a patient from rejecting the transplant after three years. If a recipient loses his transplant because he has no insurance and cannot afford his drugs, a living donor will have sacrificed himself for nothing. Talk to his Congressman about HR 6139 Comprehensive Immunosuppressive Drug Coverage for Kidney Patients Act.

I’ve never joined the ‘rah-rah’ mentality of some who promote living donation. It is am intensely personal decision. I want cures. I want living donation to be something medicine did for a short time until better solutions are developed.

So, do I regret my decision? Sometimes, when I don’t take a Motrin or Advil for an ache. But when I listen to my sister, twelve years post transplant, sing a lullaby to her two grandsons, I know I made the right decision and I’d do it again.