The coronavirus pandemic has wreaked havoc on what was previously considered a normal way of life. But don’t tell Ed Kranepool and Al Barbieri how inconvenienced you are. The men — both recipients of life-saving kidney transplants at Stony Brook Medicine’s Kidney Transplantation Services in May 2019 — have quite a different outlook on what “inconvenience” means in their post-transplant lives.
“This pandemic is the least of my headaches,” said Kranepool, an 18-year major league baseball veteran who spent his entire career with the New York Mets.
“I know people feel restricted, but they’re not going to die because they’re locked in their houses,” said Barbieri, before soberly adding, “the pandemic will end; I was waiting for my life to end.”
While the two men could never have imagined the pandemic that awaited them and the rest of the world months later, it’s also true that both had to deal with the very real possibility that they wouldn’t be here at all in May 2020. Instead, not only were they given these past 12 months, they’ve also been given a future.
“The opportunity to improve quality of life for renal failure patients by performing kidney transplant surgery is incredibly rewarding,” said Frank Darras, MD, clinical professor professor of urology/renal transplant and medical director, Transplantation Services, at Stony Brook Medicine, and the operating surgeon.
Darras added that the majority of patients who receive a donor kidney can survive for many years longer than if they remain on dialysis, thus allowing them to be more active, returning a sense of “normality” to their lives.
So what does an extra year of “normality” look like? As it turns out, it doesn’t look terribly different from what many of us would call it. But for Kranepool and Barbieri, a volunteer firefighter with the Glenwood Fire Department, the transplants brought with them a profoundly different perspective. Illustrating that point, both men say the biggest burden to be lifted was the psychological one.
“Life is much more positive,” said Kranepool, “I don’t have constant worry on my mind. I feel good, and mentally I’m good.”
“You don’t have to live your life wondering when it’s going to end,” added Barbieri. “I was on dialysis, and there were no donors. It was constant disappointment, and I was hooked up to a machine.”
Kranepool said he now welcomes the daily chores that many people dread.
“It’s a great feeling to be able to move around with no restrictions,” he said. “Before the transplant even walking was difficult. I’d wake up fatigued. Now the day begins positively. I have my strength back, I’m able to do the everyday activities I couldn’t do. I can take care of the animals again, I’ve done the floors, I’m looking for projects.
Kranepool was also able to spend some time at the Mets’ spring training facility before the pandemic occurred, as well as a 50th anniversary celebration of the Mets’ 1969 World Series championship that took place in 2019.
“I get up, I feel good, and I’m doing what the doctors tell me,” said Kranepool, whose diabetes puts him at higher risk for COVID-19.
Barbieri also cited things that many would consider “ordinary” — such as yard work and the mundane pleasure of taking care of the odds and ends most take for granted. He also was able to get back to something that was a very important part of his life — volunteering at his local firehouse.
“I can’t do everything I used to, but I’m still involved,” said Barbieri. These days he dedicates his time to helping his fellow firefighters by working on initiatives that concern lawmaking and cancer bills that currently affect 9/11 first responders.
Barbieri, who spent years coping with life on dialysis, describes the new future he was given a year ago. “With this transplant, I’ll be able to see my children graduate, I’ll be able to go to their weddings, I’ll be able to see my grandchildren. And that’s a very special thing.”
Kidney disease ranks as the ninth leading cause of death in America. 37 million patients suffer from chronic kidney disease and more than 725,000 have end-stage renal disease. Darras said there are nearly 100,000 Americans waiting to receive a kidney transplant [Source: National Kidney Foundation].
“Each year more than 100,000 Americans begin dialysis to treat end-stage renal disease,” adding the grim reality that 50 percent of them will die within five years.
As part of the Kidney Health Initiative, Stony Brook was chosen as one of only a select few US transplant centers by CMS (Centers for Medicare & Medicaid Services) to participate in the ESRD (end-stage renal disease) Treatment Choices Kidney Transplant Learning Collaborative Technical Expert Panel (TEP) on February 23 and 24, 2020. The TEP shared knowledge and experience to finalize two CMS Change Packages, one focusing on increasing organ donation, and the other on reducing the number of discarded kidneys.
“Kidney transplantation is considered the best treatment choice for ESRD as it is associated with lower mortality and better psychosocial outcomes when compared to dialysis,” said Darras. “In most cases, kidney transplantation markedly improves a patient’s quality of life.”
Perhaps it’s Kranepool and Barbieri — the men who actually went through the experience — who best summed up in real-world terms what “quality of life” can mean.
“Every day is a new day and a new experience that I’m very grateful for,” said Kranepool. “I don’t let things bother me anymore. I take it one day at a time.”
“Being able to live without my family seeing me sick all the time means so much,” said Barbieri. “They saw a lot of pain. I was not ‘living’, I was just ‘going on’. Today, just opening the door and breathing in the fresh air is special.”
— Robert Emproto