Tireless advocate for organ donation finally gets ‘the call’
James Myers of Gary poses with U.S. Sen. Joe Donnelly in Washington D.C. on March 16 on behalf of the National Kidney Foundation while advocating for the Living Donor Protection Act. (Handout – James Myers)
Jerry DavichJerry DavichContact Reporter
James Myers looked weary but cheerful when he returned home from an Indianapolis hospital with his little bundle of joy.
It weighed a quarter of a pound, and was the size of a fist. It’s name is “Woody.”
“It’s a family name,” said Myers, 61, of Gary.
After nearly four years of waiting and wondering, Myers finally got the call he had been praying for, hoping for, advocating for. It came on April 26.
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At 11 a.m. that day, Myers posted on his Facebook page: “I just got THE call. IU says they have a kidney for me!”
This post was dramatically different from hundreds of previous posts over the past few years, many which read like this one from April 18 of this year: “My name is Jim Myers, from Crown Point, IN, and I am an ESRD patient currently on dialysis, awaiting a transplant. I am on the list. If you are interested in becoming a donor…”
I read dozens of those somber posts, each one pleading for a life-saving transplant amid other social media friends who posted about their pets, chronic gripes or daily errands. I always wondered how Myers felt while reading such nonsense, relatively speaking.
“I am a type O blood type,” Myers wrote again and again to friends, followers and strangers. “All medical costs are covered by insurance and incidental costs can be worked out.”
When I first met Myers in 2013, he sat quietly in a large chair inside the Fresenius Medical Center in Crown Point. He read a newspaper while his blood was artificially cleansed of waste by a whirring dialysis machine that beeped every few seconds.
With a blanket draped over his legs and a catheter connected to his chest, Myers sat patiently for hours, as most dialysis patients must do. He visited there three times a week for at least four hours each time to undergo hemodialysis, which replaces the function of his failing kidneys.
Myers suffered from polycystic kidney disease, which took the lives of several family members, including his father, he said. Though Myers was diagnosed in his younger days, his positive lifestyle choices the past three decades only delayed the inevitable.
His genetic fate caught up to him in 2012 and he had been on dialysis ever since. “I have no choice. You either submit to dialysis or you die,” Myers told me that day.
James Myers, 61, heads into surgery April 27 with a thumbs up, flanked by his “sweetheart” Tori Pines, his son, Jim Myers, and his son’s wife, Monica, at Indiana University Health hospital in Indianapolis. (Handout – James Myers)
Chronic kidney disease may be caused by diabetes, high blood pressure and other disorders. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant to maintain life.
This was the dilemma Myers faced each day, each week, each month.
He didn’t settle for only waiting and wondering or for posting pleading messages on social media for a life-saving transplant.
Myers became a tireless advocate for kidney donation, organ donation, live donor legislature and anything related to kidney disease. He put a local face on the national “Share your spare” live donor campaign.
He became a state advocate for the National Kidney Foundation, and an ambassador for Dialysis Patient Citizens and the Polycystic Kidney Disease Foundation.
He became an outspoken activist on behalf of thousands of dialysis patients throughout Northwest Indiana. He became their voice. And their hope.
He traveled to Washington, D.C., to meet with lawmakers, including U.S. Rep. Pete Visclosky, D-Merrillville, and U.S. Sen. Joe Donnelly, D-Ind. On behalf of the Kidney Advocacy Committee, he advocated against budget cuts and for the Living Donor Protection Act.
Myers alerted us that he was among more than 400,000 Americans with irreversible kidney failure. And that more than 26 million people in this country struggled with chronic kidney disease, a figure that’s growing each year. Millions of others are at increased risk but have no clue about it, according to the National Kidney Foundation.
“It could be any of us someday sitting in the same dialysis chair as Myers,” I wrote in 2013.
James Myers, 61, of Gary, recovers from kidney transplant surgery April 27 at Indiana University Health hospital in Indianapolis. (Handout – James Myers)
Since then, I’ve talked with several other Northwest Indiana residents who were diagnosed with kidney disease or kidney failure and had to undergo dialysis. Some of these patients are kids.
“These children have unique issues among dialysis patients, and are one of the fastest growing dialysis groups,” Myers told me recently.
This is why he started a new foundation for pediatric dialysis patients and their parents. It’s something Myers is very proud of, and rightfully so.
He has met hundreds of patients through his advocacy. His Facebook page lists post after post for other people also waiting for that phone call. The same call Myers received April 26.
“Jim, we have a kidney for you,” the nurse said.
That day, Myers was admitted into Indiana University Health in Indianapolis, in the organ transplant unit. His transplant surgery took place the next day, April 27, under the care of Dr. William Goggins.
The procedure went smoothly and Myers said there were no serious problems.
Because Myers is polycystic, surgeons removed only one kidney and transplanted a new one. They will remove his other kidney at another time.
Myers is thrilled to have the one kidney. Still, he’s now waiting and wondering if the anti-rejection drugs will allow his body to accept it. Only time will tell.
He’s not sure if all his advocacy played a role in getting that call. Or maybe it was fate. Or divine intervention. Or random luck. He also doesn’t know the donor of his new kidney. He’s forever thankful.
Within hours after he returned home, his tireless advocacy got transplanted into a new campaign. He asked for signatures on his petition for the Living Donor Protection Act.
“I got my chance, can you help someone else get theirs?” he asked.
For more information on kidney disease or to become a living donor or organ donor, call the National Kidney Foundation at 800-622-9010, or visit https://www.kidney.org/.
Copyright © 2016, Post-Tribune
Opinion Joe Donnelly Pete Visclosky