Miriam Godwin - "I just knew".

by Miriam Godwin, Health Policy Director for National Kidney Foundation

Miriam Godwin Banner with photo of Miriam

I donated a kidney in April 2021 at the MedStar Georgetown Transplant Institute in Washington, DC, where I live. The kidney, formerly known as my right kidney, was most of the way to the Mayo Clinic in Arizona by the time I woke up from my procedure. Starting from the earliest days of the evaluation, I had been asked why I wanted to donate. As I began my recovery after surgery, I started being asked more often. The questions sometimes felt disorienting – kidneys have been donated by living donors for a long time. Was it really such a big deal?

I learned that I could live with one kidney when I was a teenager. As soon as I knew I could donate the other one to someone waiting for a kidney transplant, I wanted to. I heard about living donation several more times over the years and my interest was piqued, but not knowing anything about the world of transplant at that time, I had no idea how to turn interest into action. It was only after I joined the National Kidney Foundation (NKF) as a policy analyst and spent my second year on the job hunkered down at home during a global pandemic that I had the space in my life to really consider being a living donor. The people in my life who know me best would describe me, with a shake of their head and a sigh, as stubborn and impulsive. So, when I say I “considered” living donation, I mean that I thought about it for approximately 30 seconds. I just knew it was something I intensely wanted to do. That I felt so completely sure and solid may not be how other living donors experienced their decision to donate. But if you’re thinking about living kidney donation and want to know if any other donors just felt it was right—quickly and firmly—I did.
I just knew.

I did worry that I would be screened out due to my scattered psychiatric history. I try to speak honestly about my mental health, which is generally less than optimal. I remember sending my friend and colleague, who also happens to the director of the kidney and pancreas program at Georgetown, a text message asking if he knew of a program that would take me and my, er, unique brain as a living donor. He wrote back right away. “Mine,” he responded incredulously. My fear that I would be excluded from living donation due to my mental illnesses was my first indication of just how attached I was to the idea of being able to donate. As the evaluation went on, I was constantly anxious that I would not pass through the gauntlet of medical tests. Five minutes after my lab work appeared in the patient portal, I was frantically telling one friend that something was wrong with my creatinine. A different nephrologist friend patiently reviewed my CT scans and assured me that I was being neurotic and that nothing was wrong with my kidneys.

Being a living donor was something that felt essential for me to do. Two months later, I still consider it my privilege. For me, giving up a kidney didn’t feel like a sacrifice at all. I’ll joke that I am afraid of practically everything in the world except surgery. In fact, I often tell people who ask that I can’t imagine my recipient got more out of my donation than I did (although I understand this is probably untrue). I didn’t think at length about becoming a living donor because I didn’t need to. I didn’t make pro and con lists. I didn’t need to do a literature review. I didn’t need to catalogue the risks. I don’t know who got my kidney, and I might not ever know.

As to exactly why donating a kidney was so important to me, there are several answers but here are the two most important. What it came down to in large part was that if I could do anything to help a kidney patient get off dialysis, doing so would be easiest decision in the world. And it was. It’s no coincidence that my job is Health Policy Director for NKF. I love what I do, and I also struggle the more I understand the contours and limitations of the US transplant system. It is frustrating to see people suffer in a system that can put their needs and preferences last. It is frustrating to see deep rooted social injustice, poverty, and racism, play out in healthcare. It is frustrating to not always have the answers or the tools to drive progress and to know that even when we are certain of the path forward, we face the glacial pace at which policy and culture change. Donating a kidney was almost entirely in my control and I could do it right away. It was tangible and immediate.

Another reason for my conviction to donate was about identifying with living with chronic illness. While I don’t know what it is like to have kidney disease, I do know what it’s like to be chronically mentally ill. Chronic illnesses spare nothing. They don’t care that we had plans for how our lives were going to go. And, eventually, they come with perspective and some days, gratitude. In almost 34 years, here is what I have learned from mine. In a life that can be marred by darkness and pain, the fastest way to find the light is to give of yourself to others. I know that I will feel grateful, every day for the rest of my life, for the joyful experience of living donation.

Several thumbnails of Miriam Godwin during the donation process

A video countdown till surgery!

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