“The National Kidney Registry used my non-directed donation to start a kidney chain in which four people got the life-saving kidney transplants they needed. ”
Many Philadelphians can tell you where they were on February 8, 2018, especially if they are Eagles fans. In this city, the Eagles Super Bowl Championship Parade was taking center stage that day. There's another big reason I remember that day, I was in a hospital room on the transplant floor of the Rhodes Building at Penn Medicine with my younger sister, Ann-Marie.
Two days earlier Ann-Marie had donated one of her healthy kidneys to someone awaiting a kidney transplant. We watched the parade on TV, witnessed Jason Kelce's passionate speech and hi-fived each other. I was really happy to be with her on this great day; but at that time, I thought she was insane for donating a kidney.
Back to the Very Beginning
Ann-Marie's road to kidney donation started back in 2000. She was in college and got a job working as a dialysis technician. It was here that she learned that medical education and advocacy were her passion. It was also here that she learned that living donation was not only possible but completely safe. She decided if someone in her family ever needed a kidney, she would give one up without hesitation. Hold on to that last part for a minute.
Fast forward to 2006 where Ann-Marie was invited to volunteer at a sleepaway camp for kids with cancer and thought it sounded like a way to meaningfully give back. That invitation, and that camp, changed her life. The volunteers became a large and extended family. Fast forward again another ten years when, in 2016, someone from her "camp family" posted on Facebook that they needed to find a donor. Back to the beginning of the story, the date was set, 2/6/18. Since then, Ann-Marie and her recipient are both living beautiful, healthy, amazing lives. Her recipient became a grandmother three times and post kidney donation, my sister started running distances, has an awesome career, volunteers and is a mom to two young kids.
Educating Others, Inspiring Myself
As Ann-Marie was preparing for her surgery date, my sister decided she wanted to create a “1KidneyClub” to provide education and raise awareness about living kidney donation. Together we started the country's first local 1Kidney Club chapter for the National Kidney Donation Organization (NKDO). The NKDO is a non-profit organization that educates prospective living kidney donors about how to donate as safely and effectively as possible.
I really wanted to support her so I volunteered to be the Facebook page administrator. I collected all kinds of stories, statistics about waiting lists, living versus deceased donation outcomes and anything I could find to post to the page in hopes of building awareness about living kidney donation.
As I worked on the page and saw my little sister managing her whole busy life on one kidney — and not missing a beat — I started to wonder, "Could I be a kidney donor?" I mentioned it and Ann-Marie advised me well, told me I could do some testing and continue to think about telling me, "You don't have to decide now, you can change your mind at any time."
I visited the National Kidney Registry (NKR) website and answered the health questions for living donors. The NKR's whole mission is to improve the lives of people facing kidney failure by increasing the quality, speed and number of living donors. In addition to helping find donors and match their kidneys, they provide a LOT of protection for the donors. For example, should my remaining kidney ever fail NKR prioritizes me to receive a living donor kidney. They also provide donation disability insurance coverage, lost wage reimbursement during the donation period and even travel and lodging reimbursement related to kidney donation. If I was going to do this, I was in good hands.
Not long after I completed my NKR questionnaire, an enormous box with a jug for 24-hour urine sample showed up at my door. I remember texting a picture to my sister saying, "This sure got real, real FAST!" I had not even told my husband I was considering this donation. I really was not 100 percent sure I was going to do it and the urine jug sat for months.
Months passed with the idea of kidney donation secretly living in my head. I kept thinking about it, and things would happen in my everyday life that kept pointing me in that direction. For example, I attended a conference in Boston and happened to end up in the same elevator with delegates to a National Kidney Conference. A book I read had a character die of kidney disease. A months old NY Times newspaper left in my carry-on caught my eye with a story of living kidney donation. Coincidences were giving me encouragement.
Taking the Next Step: My Living Donor Testing and Evaluation
The first round of testing went well and I was approved moving onto the next round which included meeting with the full Penn Medicine Kidney transplant team. After all the screenings, and learning more about my body than I ever needed to know, I was approved to donate. Since I did not have an intended recipient, I was considered a non-directed donor. A nondirected donor is a living person who donates an organ, usually a kidney, and does not name or have an intended recipient. The organ is donated with no expectations of return and no connections between the donor and transplant recipient. The transplant recipient is determined by medical compatibility and need.
By this time, I was finally confident that I was going to share my spare kidney. My core team at the Penn Transplant Institute — living donor coordinator Donna Collins, RN; nephrologist Dr. Amanda Leonberg-Yoo; and transplant surgeon, Dr. Peter Abt — they all made me really comfortable. That Penn team, along with a rich community of other living kidney donors I found through social media, got me where I needed to be, I was ready.
Two Sisters and the 1 Kidney Club
On July 15, 2020 my left kidney got a ride down I-95 to be re-homed in a 30 something year old woman who needed it more than me. Dr. Abt said it started working as soon as it was transplanted. The National Kidney Registry used my non-directed donation to start a kidney chain in which four people got the life-saving kidney transplants they needed.
When I woke up from my surgery I was "giddy". Maybe it was the anesthesia but I felt completely elated. The incisions and my memories are the only lasting proof I did it. I am back to running and doing CrossFit, working and doing all the things I love.
I think some might think I was self-less or brave but really, I was just able to see that I had something I could share to help someone else. People enjoy giving of themselves to help others in all kinds of ways. It turns out I was fortunate enough to be able to give away a kidney. It was a very joyful gift to give and I am so thankful I was able to do it. Thank you to the Penn Transplant Institute for helping make that happen. Now I can continue our work with the 1 Kidney Club educating others and increasing awareness of living donation.