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Crown Point kidney recipient dedicated to helping others get transplants

Jim Myers, of Crown Point, runs several social media pages dedicated to connecting organ donors with recipients. He got his own kidney transplant in 2016.

It was in 1983 when Jim Myers started experiencing chest pains.

It was just months after his father died from polycystic kidney disease, or PKD, an inherited chronic condition in which liquid-filled cysts form on the kidneys.

Myers, 25 at the time, went to the hospital, where an X-ray showed large cysts on his kidneys.

“That's how I was diagnosed” with PKD, said the Crown Point man.

The news came as a blow to Myers, who has lost five family members to the disease. But he found support, including assistance from a family doctor who referred him to Indiana University Health for treatment.

That's where Myers met Dr. Richard Hellman, who put Myers on a renal diet and high blood pressure medication. Medical personnel at IU Health monitored him by taking blood and urine samples every six months.

“They kept a close eye on me,” Myers said.

Through early treatments, physicians can help forestall the growth of cysts on kidneys and protect patients from other complications, including cardiac conditions that could arise from high blood pressure.

Because PKD is an inherited disease, Hellman recommends people get examined if they have a history of it in their family.

Tests can includes ultrasounds to analyze kidneys.

Such early diagnosis and comprehensive treatment helped Myers put off dialysis for more than 20 years.

“I was very fortunate,” he said.

Dialysis, and his wait for a new kidney, started in 2012.

He said he had two or three “false alarm” calls in which he was told a transplant would take place, but the situations didn't turn out — and his condition worsened.

Though he was told in April 2016 that it might be another year or two for a transplant, he was called that month because a kidney was available.

Myers headed to Indianapolis and came home with a new kidney.

His follow-up monitoring included weekly blood draws. That has increased to every three months, Myers said, adding that his numbers “have been great” since the transplant. “I've been very, very fortunate,” said Myers, who is now 64.

Though Hellman is no longer treating Myers, the two stay in contact. “I’m glad he’s doing well,” Hellman said, after seeing Myers recently.

For his part, Myers works to spread that good fortune as an advocate for others who need a kidney.

About six months after starting dialysis, Myers learned of potential funding cuts that would have reduced services to dialysis centers, putting staffing from nurses, dialysis technicians, dietitians and social workers at risk.

“They are all very important to people taking dialysis,” Myers said.

Many of the people taking dialysis with Myers at the time didn't have such an early diagnosis, so some “were not in good shape,” he said. Many came in to the center in wheelchairs, walkers and canes. He stepped up to fight for them.

His early efforts included a petition on change.org. Myers said he also contacted newspapers, reached out to kidney organizations and met with lawmakers to oppose the cuts. His efforts succeeded. 

That was just the beginning.

There are about 100,000 people awaiting kidney transplants in the United States, but about 20,000 transplants took place last year, Myers said.

So Myers helps those searching for kidneys and advocates for a variety of causes, including organ donation, early detection and treatment legislation and live donor legislation.

Myers is active on social media, running 60 Facebook pages and Twitter and Instagram accounts.

He serves on the board of the American Association of Kidney Patients.

Myers said he is proud of the work he has been able to accomplish, including helping four recipients locate kidneys, and he has no plans of slowing down.

“This is what I want to do for the rest of my life,” he said.

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