Riding the waves of kidney disease

In the 1980s, AKF Ambassador Ronald 'Ron' Krokey was in the best shape of his life. He was doing triathlons, running 10K races and frequently participating in interoffice competitive events. So, when the same group of businesses decided to hold a health assessment event, Ron didn't hesitate to get evaluated. "Human resources wanted me to take part because I was in such great shape," said Ron.

However, the health assessment revealed that something was off in Ron's body. "They said my blood pressure was a little high, but I didn't think too much of it because I was in amazing shape and relatively young - about 23," said Ron. Still, he decided to have his urine tested as a precaution, which showed protein in his urine. After further tests and a biopsy, it was determined that Ron's elevated blood pressure was caused by focal segmental glomerulosclerosis (FSGS), a rare kidney disease that causes scarring in the filters of the kidneys.

Ron was shocked. Although his late mother had diabetes and was on dialysis at one point in her life, she never had FSGS. "It's odd that we both developed kidney failure but under unrelated circumstances," he said. However, Ron came to learn while FSGS is sometimes genetic, it is possible to get the disease even if no one in your family has had it.

Ron was able to avoid dialysis for 11 years after his diagnosis by monitoring his blood pressure on a daily basis, following a kidney-friendly eating plan, taking medication and staying as active as possible. Unfortunately, that all came to an end in 1999. "I came in for an appointment to do a review of bloodwork and the doctor said that I needed to go to the emergency room and get started on dialysis," said Ron. 

From that point until 2008, Ron was on peritoneal dialysis and doing manual exchanges to keep himself alive. "[Peritoneal dialysis] made me feel tired all the time," said Ron. In 2008, he switched to nocturnal peritoneal dialysis and then to in-center hemodialysis in 2009, which he found was a better fit for him. 

Dialysis is "an intermittent interruption in your day every day of the year," Ron said, comparing the treatment to being in an ocean. "The waves don't stop," he said. "You get hit by a wave and recenter yourself, and then you get hit again. As long as you can accommodate yourself and get used to being in the waves, you're good. You're not on the beach anymore, you're in the water."

After switching to in-center dialysis, Ron found out about AKF and quickly decided to become an Ambassador to help other people living with kidney disease. "I wanted to help as much as I possibly could and AKF has ample opportunities to do that," said Ron. As an Ambassador, he has taken part in several Kidney Action Days on Capitol Hill in Washington, DC, and has spoken on behalf of AKF on various occasions. He also has written inspirational letters to kidney patients to help them overcome feelings of powerlessness and depression. In 2018, he received AKF's Hero of Hope award, one of the highest honors given to a kidney patient in the United States, in recognition of his advocacy for kidney patients.

Yet despite all of this, Ron said he wants to increase his involvement with AKF, which decreased after receiving a kidney transplant in 2015. His transplant enabled him to return to the workforce for the first time in several years but returning to work also consumed a lot of his free time and made him incredibly busy.

However, for Ron, busyness is not an excuse to not give back. "[Helping others with kidney disease] is literally part of my DNA," said Ron. "I've been there and have gone through every phase and am well-versed in all the different dialysis options, so it's horrible if - with all of that - I don't help somehow. I have a responsibility [to help] and I take that very seriously."

For more information on FSGS, visit our website.

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