Month: January 2023

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 The medical community had changed and with it many of the systems previously in place were stretched very thin or no longer applicable to our situation.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.

Righting Another Race-Based Handicap at Last

Critical wait times on national lists for a kidney–typically several years long–are finally being adjusted to make them more accurate and fair to African Americans. This move is all the more important because black people in the United States are nearly four times as likely as whites to have kidney failure.

I don’t think most people realize that until recently when you got your kidney-function blood test results, the same creatinine reading (level of waste products) was rated differently if you were African American. Let me illustrate with my own test results. A couple of years ago my blood tests showed a creatinine of 0.94 (higher than my usual since my donation but still fine for one kidney). Beneath the 0.94 was my eGFR (“estimated glomerular filtration rate,” or kidney function): 60. The 60 is just on the cusp of normal. Of course, as a white person, I was looking at the line that read “non-African American female.”

If I had looked instead at the next line–African American female–I’d have seen a 70 (completely normal). Note: same level of creatinine.

When the levels are lower, the differences can have serious ramifications for treatment approach because these are the numbers that categorize stage of chronic kidney disease. Ultimately, below 15 denotes kidney failure, meaning an imminent need for either dialysis or kidney transplant.

The eGFR formula had been in place in the United States since the nineties, based on a few characteristics, including muscle mass. Fortunately, in 2021, after the National Kidney Foundation and the American Society of Nephrology got together to look at the use of race in these calculations, their task force announced a new race-free calculation. Now GFR readings differ only by male and female.

Just think about the implications. The point at which someone is put on a transplant wait list, and their priority on that list, is based on numerous factors, including GFR. If patient A is listed with a higher kidney function–that is, seemingly less sick–despite the same creatinine, that naturally affects their wait time.

Now, as of January 5, 2023, in “an unprecedented move to correct racial inequity in access to kidney transplants,” all U.S. transplant centers are required to review their lists to see which black patients were listed based on the old, race-based formula, according to yesterday’s article in USA Today.

“It’s a restorative justice project in medicine,” said Dr. Martha Pavlakis, nephrologist and kidney transplantation committee chair at the Organ Procurement and Transplantation Network, which develops policies for transplant centers.

Given that the overall wait for a kidney is already tragically long (5 to 10 years or more), anything that unfairly misinterprets a patient’s kidney function has life-and-death consequences. These race-based formulas for interpreting kidney function have clearly contributed to the shamefully longer waits for African Americans, who make up about 35 percent of people on the wait lists (but only 13 percent of the U.S. population).

This is huge news for African Americans and for everyone concerned about health care inequities.

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.