Transplant chain achieves man’s wish for new life

Jay Ernst was cut off from many of the things he loved in life in 2017 as his kidney function declined. No energy for playing with his son, going on family trips or doing anything more than just getting by.

“I slept, worked and slept. That was my life for nine months,” said Ernst, a Russet Woods resident who has lived with his diagnosis of IgA nephropathy since he was 16 years old. “My 2-year-old son loves to play, and I couldn’t play with him.”

It would take an old friend from college, a team of UAB doctors and a handful of strangers to restore him to complete life again.

In October, Ernst received a transplant as part of UAB’s Kidney Chain. The program works with patients who need a transplant and have friends or family that are willing to donate but are not a blood type match. 

Doctors pair the patient with another willing donor in the chain, while their friend or family member donates on their behalf to someone else in need of a kidney.

UAB transplant surgeon Dr. Jayme Locke said the Kidney Chain has resulted in 88 transplants performed at UAB since the chain started in December 2013 on patients ages 13 to mid-70s, with more scheduled in 2018. 

There were more than 300 total kidney transplants done at UAB in 2017 between the Kidney Chain, individual donor-recipient pairs and deceased donor transplants. 

Most of the donors and recipients in the chain are from the southeast, but a few have come from across the U.S.

“We believe it’s a world record, to the best of our knowledge,” Locke said of the chain. “We would love to get to 100 [donations] by March. We’re on our way.”

Ernst is an Erie, Pennsylvania native who moved to Russet Woods in Hoover in 2011. He works in medical device sales and has been married to his wife, Emily, for six years. They have two sons, three-year-old Brady and 10-month-old Cole.

Nephropathy led to severe fatigue and water retention in Ernst for many years, as his kidneys couldn’t adequately filter his blood. Ernst said it was not uncommon for his weight to fluctuate by 10 pounds in a day due to water retention. Ernst said he was able to avoid dialysis, but he knew his long-term options were narrow. 

“You die, you get dialysis or you get a kidney transplant. There’s no easy fix button,” Ernst said.

But at the end of 2016, Ernst’s kidneys began to decline. From November 2016 to March 2017, he said his kidney function dropped from 40 percent to 12 percent and he found out he would need a transplant. Only a month later, his son Cole was born with birth defects that led to two months of hospitalization.

“It was a very stressful time,” Ernst said. “Obviously there was a lot of mental anguish with what was going on with my son and myself.”

Through most of 2017, Ernst’s nephropathy led to him sleeping 12 to 16 hours per day. He woke up each day feeling “like someone beat me up” due to sore joints and stiff muscles. 

With his restricted waking hours, Ernst said he had to prioritize his job to financially support his family, but this came at the expense of spending quality time with his wife and taking care of his toddler and newborn.

Ernst was approved to be on the kidney transplant list in July 2017, and he looked forward to a transplant because “anything could be better than how I was feeling.” But he also knew that waiting for a deceased donor could take a while.

“I’m [blood type] O+, so it’s harder for me to get a kidney than to give something,” he said.

Locke said people with Type O blood are on the transplant list for eight to 10 years on average if they don’t have someone willing to donate to them. 

Relying on deceased donors isn’t just about wait times, Locke said: kidneys from living donors start working faster and last 20 years or more, while kidneys from deceased donors last about 10 years on average.

“It’ll start working in the operating room,” Locke said of living kidney donations. “[Patients] typically feel like a million dollars basically, sometimes the night of surgery.”

It’s part of the reason Locke wants to keep the Kidney Chain going and encourage more people who are willing to be donors in the chain.

“More than a number, our goal here at UAB is to help as many people as possible. So we would love to see [the chain] never end,” she said.

Instead of waiting years on the transplant list, Ernst appealed to Facebook for anyone willing to consider donating. 

One of the responses was from Zach Taylor, a friend from Ernst’s days on the football team at Washington and Jefferson College. Taylor was living in Portland, Oregon, but the distance didn’t bother him, nor did the fact that he wasn’t a direct match.

“He said, ‘I’ll do whatever it takes to ensure Jay gets a kidney,’” Ernst recalled.

Ernst and Taylor completed their link in the Kidney Chain on Oct. 12, 2017. They had the chance not only to meet and befriend Ernst’s donor, Tyler Williamson, but also the person who would receive Taylor’s kidney. 

They were “in and out of each other’s rooms” leading up to the surgery, and Ernst and Williamson prayed together the night before the transplant.

All of them continue to keep in touch through social media.

“We built a bond from this experience,” Ernst said.

Locke said that’s very common for participants in the Kidney Chain, both donors and recipients.

“These people all become part of this larger family,” Locke said. “It’s really remarkable the sense of community around this.”

Ernst received his transplant on a Thursday, and he was home from the hospital and off pain medications by the following Tuesday, 30 pounds lighter and many times more energetic. He was even able to take Brady trick-or-treating a couple weeks later.

Since his transplant, Ernst has been able to play with his sons, return to the gym, mow the lawn and go on a family road trip.

“I’m just able to do a lot more, things that maybe you and I take for granted at times,” Ernst said. “I’m able to do that now without even thinking about it.”

He said he continues to be impressed by the people in the Kidney Chain who would willingly give an organ to a stranger. Ernst said he likes to share his story in the hopes of finding more people to join the chain.

“It’s so selfless of them to think of others in that situation,” Ernst said. “Whatever I can do to help the next person like me out, … it makes it well worth it.”

Learn more about the Kidney Chain atuabmedicine.org or alabamaorgancenter.com.