My Kidney Donation Journey

March is #NationalKidneyMonth and April is Donate Life Month. In honor of this, I would like to share my kidney donation journey. In October, I became what is known as a non-directed kidney donor. While I am reminded daily of the surgery because my small scars are still relatively fresh, my overall physical recovery from my kidney donation is remarkable in just how unremarkable it has been.

I was inspired to donate a kidney by first learning about non-directed donors years ago while listening to a podcast about the NYTimes, “Who Is the Bad Art Friend?” piece. The idea lodged itself in my mind. A few years later I read the beautiful piece, “I Had to Do It Without Telling My Beloved” by Leah Hager Cohen in the NYTimes. The piece, while focused on her relationship, had a different message for me – gratitude, bodily autonomy, and abundance - gratitude for the privilege of good health, gratitude to be able to decide what to do with my body, and abundance in my life that allows me to luxuriate in my good health. As an humanitarian worker, these are emotions I feel most days but in reading,  “It had come to seem an embarrassment of unearned riches,” I felt as if Cohen was directly asking me to cash in some of these riches.  So in being ever action oriented, I started to research what it means to be a non-directed donor.

Firstly, kidneys are amazing, they are the star among organs, and so dynamic that we can live a healthy life with just one healthy kidney. As a non-directed donor, if in the future I am in need of a kidney, I will be prioritized on the waitlist. I was also able to take advantage of a ‘voucher’ program to ensure priority on the kidney waitlist if a loved one, in the future were in need of a kidney that I could not give.  After being paired with a mentor and receiving a number of medical tests (ultimately covered by the recipient’s insurance) I was determined by the medical establishment to be in good health -  body and mind (phew!) - I started to prepare for the actual surgery at NYU Langone Health . 

On October 24th, my surgeon removed my ‘beautiful’ kidney (her words not mine) and it was sent to the Mayo clinic. By the end of the day, while I was recovering, my kidney was successfully implanted into its new owner. Modern medicine is miraculous - a part of my body was taken from me, was shipped across the US and is now allowing someone to live a healthy life.  In addition to the one life that was saved by my direct donation, non-directed donors also kick off a chain which frees other kidneys that may not be a match from their donor. My donation contributed to an additional three people receiving a kidney donation/transplant.

I spent one night in the hospital and the first two days were rough but within a week I felt good, not great. While I needed a few weeks to get back to normal, especially in terms of fatigue, this temporary recovery, continues to feel like a small price to pay for the renewed life my kidney has given to the recipient. 

I recognize that kidney donation is not for everyone, but I hope for some readers to plant a seed that will perhaps grow over time, just as happened with me. 

Approximately, 100,000 Americans are in need of a new kidney and as with most health issues in the US, this is a health equity issue with more black and brown people in need of a kidney and until recently, unscientifically discriminated against when placed on the waitlist (#KIDNEYEQUITYFORALL). Right here in NYS there are around 7,000 people in need of a kidney, and while efforts are being made to encourage more donors, we know that since the early 90s there has been a huge increase in need while donor numbers have remained steady, not rising to meet the increase in demand. While waiting for a transplant, most people live with dialysis. While dialysis is very effective, it is hard on the body, and requires several hours per week interrupting the ability to work and home life, and dialysis is expensive. In the US, the most common cause of kidney disease is diabetes, followed by high blood pressure. 

In this #NationalKidneyMonth I encourage everyone to learn more about their kidney health - find out if you are at risk here. And consider becoming a donor - organs from living and deceased donors are valuable to those in need.  In NY, you can also call your state legislator to ask them to support legislation to encourage donors (S2784/A3462) by providing living donors with lifetime health insurance.

Efforts are being made to make kidney health efforts and transplants more effective, affordable and equitable, check out some recent policy wins here.

Kidney donations may be the biggest non big deal that exists. I literally (and in this case, I am using the word literally correctly) saved someone’s life. At the same time, with the support of my dear family (yay Mom!) and friends, I am back to work, back to community organizing and I will mark the 6 months post surgery by running a ½ Marathon.

In the discussion following the screening of her documentary Confessions of a Good Samaritan, Penny Lane described the parable of the Good Samaritan and why she likes to use that term when describing her donation. She noted that in life all of us are all of the characters in the Good Samaritan story -- sometimes we are the person who needs help, sometimes we are the person who walks by, and sometimes we are the helper. In this case, like Penny, I was the Good Samaritan. I have moved on from my donation while knowing there are 4 people out there living a better life because of my kidney donation. It doesn’t get better than that. 

If you’d like to learn more about the process, please reach out, or learn more at the National Kidney Foundation or check out Dylan Matthew’s Vox piece about his personal experience here.