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Gift of a Lifetime

 Brian and Lee Adams immediately before transplant surgery, with family friend Doug Rehberg.
Doug Rehberg, a longtime family friend and pastor at Hebron Church in Penn Hills, visited Brian and Lee Adams  before Brian donated part of his liver to his dad.
L

ee Adams recognized the signs, because he had been down this road before. Despite following all the rules and taking all the precautions, the liver that he received in 2004 started failing him early in 2019. Although he was hit harder the second time, Adams says because of a change in the rules governing transplants and the sheer number of people waiting for a transplant, it was harder to get a liver from a cadaver.

“I was a lot sicker that time around,” said the McCully Street resident, “But because the rules had changed in the past 15 years, it was harder for me to be prioritized on the list. UPMC was really promoting  living donor transplants as another option,” Adams said.

His daughter, Elyse Hacke, Ridgeview Drive, began searching online for candidates for live donation, and a surprising number of people answered the call, but Adams faced yet another hurdle—his blood type, B negative, is one of the rarest. Less than 2 percent of the world has B negative blood. Adams can only accept organs from others with B negative, or from those with O negative, which is the universal donor blood type.

As if that wasn’t enough, “I’m not the type to ask people for things,” he said. “I couldn’t bring myself to ask someone to give me part of their liver.”

Elyse agreed. “Dad wouldn’t even ask to borrow someone’s lawn mower, let alone ask them to donate part of their body to him,” she said.

Lee’s son, Brian, watched his dad get sicker and sicker as 2019 wore on and the candidates’ list dwindled. By then Lee had moved up on the cadaver organ list, but it was still looking like a long road.

“It was like a horse race,” Brian said. “Dad was on the cadaver list, but how long could he hold out to get a call for an available organ?” He didn’t like the odds of this horse race.

So Brian, without Lee’s knowledge or approval, began the workup for the living donation process with the doctors. A 28-year-old former multisport athlete in high school, Brian met the physical requirements and, of course, sharing his dad’s B negative blood sealed the deal. Then came the argument.

“I didn’t want him to do it,” said Lee. “I said, ‘I could never let you put yourself in harm’s way like that. He told me, ‘Dad, I’m not doing anything you wouldn’t do.’”

Elyse’s husband, Mike, asked Lee perhaps the toughest question of all. “He said, ‘Brian’s ready to donate and if you refuse, you’ll die. What does that do to Brian?’”

Argument over.

Portrait of Lee Adams, his son Brian, daughter Elyse and her husband sitting on a porch.
Lee Adams’s (far right) liver transplant surgery and recovery was a family project. Son Brian (second from right) donated more than half of his liver to his dad; son-in-law Mike Hacke, second from left, made the argument that convinced a reluctant Lee to accept the gift; daughter Elyse Hacke coordinated the search for a donor and brought Lee into her home for four months of recovery. She even offered herself as a donor despite giving birth to a baby girl just a week before the transplant surgery. “Do a C-section and take the liver at the same time,” she said with a smile.

Right around Halloween, 2019, Brian gave his dad 55 percent of his liver. And here’s the great part: within three months, he had grown 95 percent of it back.

“It’s remarkable how quick a liver can regenerate,” said Brian.

After the surgery, Brian was out of the hospital in three days. “I tied the record!”

Lee’s recovery took longer than three days. He was in “Hotel Montefiore,” as he calls the hospital, for three months. Brian, Mike and Elyse—who incidentally had a baby girl one week before the transplant—came to visit every day for three months. After his discharge, Lee moved in with Elyse for another four months while his recovery continued.

“Elyse was the conductor; she kept everything on track,” he said. “Your kids—you hope you raised them right.” In the Adams house, that’s not a subject for argument.

Lori and Matt Keener with their baby son in a park in Mt. Lebanon in the fall time.
Lori and Matt Keener, with their son, Ryan. Matt died when Ryan was six months old. His organs saved six lives.

Lori and Matt Keener had just left Mass two days before Christmas, 2018, when Matt started feeling sick. The 43-year-old had a heart attack and died on Christmas Eve, leaving behind a six-month-old son, Ryan.

Lori had a friend who worked at Allegheny General Hospital, and he was on Matt’s floor when he passed. He reached out to Lori to tell her how he overheard the phone calls that the Center for Organ Recovery and Education (CORE) reps were making all over the country to alert people on donor lists that they had some good news. A lung patient who had been waiting four years. A kidney patient who was waiting for six. Christmas miracles. Six of them. Matt saved six lives that Christmas Eve. Matt was a rare find. In the absence of long-term illness, his organs were in excellent shape.

“The people from CORE were so respectful, there was so much love surrounding the process,” Lori said. “I learned so much from them. They told me ‘From this point on, we don’t say organ. We say gift.’” Matt’s gifts found their way into lives all around the country.

Amy Weisgerber is a transplant coordinator for CORE, which partners with hospitals in western Pennsylvania, most of West Virginia and Chemung County on New York’s Southern Tier to facilitate organ recovery. If a hospital is unable to offer lifesaving treatment, a CORE representative will speak with the family about the possibility of organ donations.

“I meet people on the worst day of their lives,” said Weisgerber. “I’m really a bummer at parties when people ask me what I do,” she said wryly.

Weisgerber knows the importance of empathy and knows that she is not trying to sell people something, but instead is offering an option and a chance for each tragedy to have a positive outcome for someone.

“Meet people with kindness, meet them where they are, see the place they’re in, the trauma they’re suffering,” said Weisgerber.  “It’s like families are suddenly dropped into a foreign land. When you’re lost, you look for whoever looks like a nice person to help you. It’s important to see the place they’re in, to meet them with kindness and to not have an agenda.”

Lori Keener standing with her some Ryan.
Lori Keener lost her husband, Matt, on Christmas Eve, 2018, when their son, Ryan, was just six months old. Lori and Ryan have gone out to stores the last two Christmas seasons to hand out gift cards to shoppers and tell them Matt’s story.

“You need to take a moment to appreciate the loved one,” she added. “I get to view them through their family’s eyes. I carry those memories with me. Nothing is more important than those moments with the families. I feel like the time I’ve spent with them has made me a better person.”

“I’m very grateful for the trust that families put in us,” Weisberger said. “We are the good stewards of the gift they give us.”

Once the family gives permission, CORE sends the pertinent information to the United Network for Organ Sharing (UNOS), a national clearinghouse for donations and transplants. UNOS has a matrix that factors blood type, body size, medical urgency and length of time on the transplant list. Once organs and recipients are matched up, the transplant team takes over.

Cardiac surgeon Stephen Bailey, Hoodridge Drive, is the director of Allegheny Health Network’s Cardiac Institute. Before that, he ran AHN’s transplant program for 15 years.

For hearts, the window of viability is anywhere from two hours to two days to get the team together and get the process started. This can play havoc with a schedule. “Despite every effort, a lot of times the calls (for surgery) come in the middle of the night,” he said.

Bailey sees his transplant patients out and about. “Outside of the hospital, you’d never know they just had a heart transplant.”

The father of a friend of Bailey’s from church had a heart attack in Cumberland, Maryland. “We were able to get him transferred to AHN. I did the transplant and he is doing well.”

After Lee Adams’s 2004 transplant, Elyse, then a junior at Mt. Lebanon High School, wrote a paper on the operation and its effect on her family for health class. She started a group at Penn State to promote organ donor awareness and registration, and went on to a career in biomedical engineering. “Dad’s experience really shaped our futures,” she said.

Elyse’s high school paper was so well received, Lee said, that her health teacher, Jan Billotte, invited him to address the class. Thus launched an avocation that he still practices.

He’s heard all the reasons people have for not becoming an organ donor. One of the most common is the most insulting to a medical professional: “People say ‘Oh, they see that organ donor stamp on your driver’s license and they’re not going to try to save you.’”

Aside from the preposterousness of that statement (Hippocratic Oath. Look it up.), discussions with family members about donation don’t even begin until after a patient has been declared dead.

For kids or their parents who may be hesitant to put that stamp on their driver’s license, Lee boils it down to street-level common sense: “If you needed a donation to save your life, to save the life of someone in your family, would you accept it? Then don’t you think it’s fair that we all donate? If you’re going to take, shouldn’t you give? Can’t take it with you.”

The talks hit home for Lee when one of the kids who heard him speak was diagnosed with a very aggressive cancer while still in school, and he asked for a visit from Lee.

“They were giving this kid a 30 percent chance of surviving two years, and he asked to talk to me!” The best part of this story is, the two years came and went, and more years passed and the kid was still around.

“He was back visiting me in Montefiore.”

CORE’s network includes 150 hospitals and seven transplant centers. In 2020, CORE received the gifts of 86 hearts, 206 livers, 442 kidneys and 1,224 tissue donations. The gifts were responsible for saving 792 lives, and improved the quality of life for close to 90,000 people with corneal implants, bone and ligament repair and skin grafts.

“Don’t disqualify yourself,” Bailey said. “Just because you may not look like a donor, doesn’t mean you can’t donate something. We go to great pains to see that we use the precious gift that we’re given.”

CORE follows up with letters to the family and to the hospital staff detailing the impact of the donation.

“CORE found out that Matt loved sports, so they gave us a little Build-A-Bear with a Pittsburgh Penguins sweater on,” Lori said. “They recorded his heartbeat for us and gave it to us on Christmas night when we went to say goodbye before his surgery the next morning.  It was so beautiful, our family said a few words and the representatives of CORE and staff from the hospital came.  It was a beautiful memory of so many people honoring my husband.”

Lori hopes one day to hear from some of the people who benefitted. So far, she has received one letter, from someone who received the gift of a tissue donation from Matt.

“It was from a woman who worked construction, and who suffered from terrible back pain,” said Lori. “Because of the donation, she doesn’t have the pain anymore. It was such a beautiful letter, it was an honor to donate.”

The last two Christmases, Lori and Ryan bought some gift cards, one year at Target and last year at Giant Eagle, and they handed them out along with a brief description of Matt’s story.

“I call it honoring Matt’s Angelversary, sort of rolls off the tongue,” she said with a smile.

Before this happened, Lori, was not herself an organ donor, but that has changed. “I’m a reformed donor,” she says with a laugh. “I had to reframe what happened with Matt into something positive. Organ donation wouldn’t change what happened. I still lost my husband. But he saved some lives, and my son knows his daddy’s a superhero.”

Photos by John Altdorfer