Recently, I was excited to receive a very happy update to a long, frustrating quest for a kidney. Stormi Murtie, a North Carolina woman who had contacted me last year when she learned of our book, had been tirelessly trying to get a kidney for a loved one to whom she could not donate. She’s now getting ready to pay it forward by sharing her healthy spare kidney with someone else. I thought reading her moving story might give hope to anyone who has ever despaired of getting “the call.” (I took the liberty of adding emphasis to a few passages that seem particularly important or instructive.)
Two years ago my then 32 year old firefighter step-son Brecon contracted a very rare life threatening condition called Goodpasture Syndrome. It did not kill him, but it killed his kidneys. Left in total renal failure, his new normal was 4 hour dialysis sessions 3x’s per week. His body could not tolerate home hemodialysis, so after his work day ended he would spend hours at the dialysis center. It was exhausting. With us in NC and Brecon in FL my husband made countless trips back and forth and we learned everything we could about renal failure, antibodies, point systems, hospital protocols, kidney transplants–and living kidney donors. From books, articles, organizations, we poured over every snippet of info we could. The process can be extremely complicated, and feels frustratingly slow.
We learned that much of the info we received was from a pre-Covid system and did not apply. The medical community had changed and with it many of the systems previously in place were stretched very thin or no longer applicable to our situation. I came to understand the incredible need for living donors of all ages, and I was committed to being healthy enough to be approved.
Slow motion forward to August 2022: after extensive medical appointments, a new lifestyle, testing at Shands in Gainesville, and 25 lbs lighter, I was approved to be a donor in a “paired donor exchange” program.
While waiting for the computer to uncover any viable options, Brecon was also on the waiting list at 2 Florida hospitals for a deceased donor kidney, and multiple friends and family were being tested to see if they were a match. Wherever a viable kidney could be located first, we were casting as wide a net as possible. Since he was highly sensitized, finding a match was very difficult. Suddenly and unbelievably, after many false starts, on November 7, 2022 Brecon received that call. And after waiting all day for a thumbs up or down, he received a kidney from a selfless family of a deceased donor. He is currently doing well and we are so hopeful he continues to thrive with his new kidney. After two years, the very first trip Brecon was able to make was to us.
Now: It is time for me to pay it forward. Details are still in flux but I have also received the call that a chain donation is on the table. With me as the altruistic first cog in a chain of donations, three wonderful people are in queue to finally receive their transplants (nationwide, over 93,000 are on the kidney transplant waiting list).
One day soon, multiple surgeons, donors and recipients will converge in Gainesville, and like a fine-tuned performance, an intricate ballet of donors and recipients, following multiple operations, lives will be changed. I am honored to be able to donate my kidney to help a stranger in need, to ultimately pay it forward just like the selfless donor family did for Brecon.
For related posts, resources, and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.