Tag: Stormi Murtie

Amping Up the Advocacy in Music City

Capitol Hill kidney summits–like the most recent one I described in my last post–typically draw more than 100 advocates from all over the country. The events are exciting and always include a day of informative talks, valuable training, and practice. It’s a tight program focused on the day of imminent meetings ahead, and there’s inevitably some anxiety about schedules and security lines if not the meetings themselves. So it was a real treat to be able to discuss advocacy at a more leisurely pace this week in Nashville with a smaller group of advocates from the region: American Kidney Fund Ambassadors.

The AKF advocacy team prepared an interesting day-long agenda, which left me motivated to (1) do the online training to become a kidney health coach and (2) think about someday pulling together a local advocacy event. And, as always, I left with admiration and fondness for my fellow advocates.

There I met up with living donor Stormi Murtie (center of pic), whom I’ve written about here (stepson Brecon is unfortunately back on dialysis and working full time while waiting for another transplant). I spent the most time with Stormi and Crystal King, a transplant recipient I’d met at a previous AKF event. I knew that Crystal’s quest for a transplant was several difficult years in the making. What I didn’t know is that she was one of the many casualties of the old race-based calculation used to designate kidney function (eGFR).

Under the old system used until 2022, lab results for creatinine (the level of waste products in the blood) showed different estimated kidney function for African Americans and non-African Americans. In other words, the same creatinine reading that might indicate kidney failure in a white woman, for example, was considered higher functioning in a black woman, based on assumptions about differences in muscle mass.

In practice, that misclassification meant that Crystal’s eligibility for a transplant was delayed by about three years. Her transplant was further delayed by the start of the covid pandemic when centers temporarily halted transplants. Fortunately, Crystal ultimately received a kidney from a living donor.

Today she’s a healthy, active, and effective kidney advocate. She’s the founder/director of the Kidney Champion Foundation, a nonprofit dedicated to helping historically marginalized and underserved communities of people living with kidney disease.

I am always honored and inspired to spend time with such remarkable, dedicated, and warm individuals in the kidney advocacy community.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.

Happy to Pay It Forward

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.)

Stormi writes:

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.

A clearly happy Stormi and her undeniably healthy-looking stepson, Brecon, after his transplant.

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.