Tom Cooper is a lucky man.
Thirty-five years is a long time to be walking around with someone else's organ. Transplanted kidneys often don’t last so long.
Among the things this retired federal employee has to be thankful for, including his brother who donated a kidney to Cooper in 1979, is the Federal Employees Health Benefits Program (FEHBP). Its prescription drug coverage allows him to get the medicine too many kidney patients can’t afford.
That points to a divide in the nation’s health system that can punish the uninsured in the most mean-spirited way — early death.
“I’ve been very fortunate,” said Cooper, 61, a former Bureau of Prisons employee living in Fredericksburg, Va.
It didn’t always seem that way.
Though he and his family didn’t realize it, his kidneys apparently began deteriorating when he was 9 months old, the result of crystallizing sulfa drugs. Cooper didn’t know anything was wrong with his kidneys until he was 14. Long suffering with respiratory problems, he passed out and was taken to the hospital where he stayed for two weeks. That’s when he found out his kidneys were slowly failing.
He recalls being told by a doctor, “You probably won’t live until you’re 24.”
The doctor was almost right.
When Cooper was 24, he suffered from ankle swelling and severe exhaustion.
“By the time I realized what was going on and went to the doctor, I was pretty much in heart failure and kidney failure and probably was two, three days away from dying at that point,” he recalled.
Dialysis saved his life, at least temporarily.
Dialysis is a life-saving procedure for many, a technological miracle that cleans a patient’s blood when the kidneys can’t. But it wasn’t working well enough for Cooper. By age 26, he wouldn’t live much longer.
“It works well for some and for others not so well, and I guess I fell into the latter category,” Cooper said.
His brother Ed, then just 18 years old, was asked if he’d donate one of his kidneys to Tom.
“It was really a pretty simple decision for me,” said Ed, now a Nashville businessman. “Tom was dying.”
Humans come equipped with two kidneys, but need only one.
While Ed’s kidney has renewed life for Tom, it has in no way interfered with Ed’s life.
“I’ve never had any problems,” Ed said, “never been limited in any way. I’ve played sports . . . raised three kids. It’s basically an afterthought.”
Now the brothers “promote organ donation and transplant education with our story,” said Tom, noting that March was National Kidney Month and April is Donate Life Month.
Tom has written a memoir that covers his transplant and other experiences. “Miracle at Exit Number 3” is named for the Interstate 24 exit that cut his Paducah, Ky., family farm in two.
“Part of our story is to encourage potential donors that longevity of their gift is possible," Cooper said. “Their gift may sustain the recipient’s health for decades and allow children and grandchildren to thank the donor for their gift of life so long ago.”
After the transplant, Cooper married and had children, so “that gift of life to me gives life to others as well,” he said.
He knows that gift might not have lasted so long without FEHBP’s prescription drug coverage. Many others aren’t so fortunate. Medicare covers anti-rejection medication for three years after a transplant, saidHarold Helderman, a nephrologist at Vanderbilt University in Nashville where Cooper had his surgery. Helderman said studies show poor and uninsured people have lower rates of survival after the Medicare coverage expires.
If those patients don’t keep taking medication that allows their bodies to accept a foreign kidney, they might have to go on dialysis, which Medicare does cover. But dialysis has lower survival rates and is much more expensive than the anti-rejection medication.
Medicare’s limited drug coverage is “penny wise and pound foolish,” Helderman said.
Cooper didn’t have to worry about his drug coverage because of his federal employee benefits.
“That’s one of the reasons I decided to work in law enforcement and the federal government,” he said, “to ensure we had health insurance for our family.”
Even now, with the Affordable Care Act taking effect, not everyone has that choice.
Previous columns by Joe Davidson are available at wapo.st/JoeDavidson.