A Rochester resident who didn’t expect to see another year is showing his gratitude with — what else? — a huge party.
Ed Nelson, 65, will celebrate his "first birthday" post-organ transplant with friends, family, and much of the staff of Mayo Clinic’s Eisenberg and Charlton 10.
The story begins
In 2010, Ed was diagnosed with NASH, (nonalcoholic steatohepatitis), in which fat builds up in the liver. Over the next several months, he was told to monitor the condition, and reported for MRIs about every six months to ensure that the organ had not deteriorated too much.
On Sept. 22, 2013, at his oldest son’s birthday party, he remembers taking a turn for the worse. When he got home, the problem made itself clear.
"I felt sick, so I told Kristie I was going to get up," Ed said. "When I got to the bathroom, I vomited blood."
On the way to the ER, he brought up "several more pans" of blood, which a CR scan attributed to esophageal varices, or bleeding caused by the NASH.
"They dropped six units of blood on me," Ed said. "They said my organs were starting to shut down."
The surgery fixed the bleeding, but damaged Ed’s kidneys — on top of the liver damage, he now had a chronic kidney disease and testing to go to every three months.
The kidney damage eventually repaired itself slightly, though the liver damage remained.
Getting on the list
But Ed wasn’t sure he wanted a transplant.
"We kind of had to convince him," Kristie said.
Fear of the long, laborious surgery and recovery were the first barriers. Ed said he’d lived "a pretty good life," and also worried that the organ would be needed by someone else.
"I remember saying, ‘Just put your name on the list, if you can, and then when the time comes, you can say no,’" Kristie said.
Doctor Johnson put his case before the transplant board. He got on the list.
Ed’s MELD score, a numerical score assigned to adult liver transplants, was in the high 20s at that point. (40 is the maximum, most severe, score on the MELD scale.)
By January of 2017, Ed’s kidneys were much worse. Anti-rejection drugs were hard on the already-damaged organs. The doctors predicted that even if he received a new liver, the kidneys would fail. The prognosis was dialysis for life — or a new kidney.
Both organs would have to come from the same donor to minimize the rejection risk. And that donor would need Ed’s blood type, A-positive.
Ed considered dropping off the list. But his children and grandchildren encouraged him to stay on.
Family members — even his son’s finance — offered their livers and kidneys.
"If they had actually tried to go through the surgery, I would have said no," Ed said. But their enthusiasm encouraged him to stay hopeful.
In the time between January and April 2017, Ed’s MELD score jumped to the top, and stayed there.
"You need organs, but If you’re not quite sick enough, your MELD score isn’t high enough and you won’t be high on the list," Kristie said. "But if I’m too sick, I won’t make it through the surgery anyway."
At the end of March, his kidneys shut down. Ed went on dialysis.
"I was just getting sicker every day," he said. "I could feel it, even though everyone taking care of me was very positive."
Kristie spent every day with Ed in the clinic.
On April 3, when she arrived, Ed had some bad news for her.
"I said, ‘I’m giving up. I can’t do it anymore,’" Ed said. "That was around 7:30 in the morning."
At 9 a.m., much of the surgical team filed in to Ed’s room.
Dr. Charles Rosen, a liver transplant surgeron delivered the message:
"Mr. Nelson? We have organs for you."
"You said, ‘Are you kidding me?’" Kristie said.
"I don’t kid about this," was the response.
The surgery was scheduled for that night, at 8 p.m.
But there was one more hurdle to leap over.
"I said, you have to be kidding me — there’s a game on!" Ed remembered.
On April 3, UNC played Gonzaga in the NCAA and won, 71-65.
At about 5:30 p.m., the surgery was pushed back to 10:30. Ed saw the game, but doesn’t remember it much — he already had his game face on for the surgery to come.
"I went to the OR, and before I went in, I said, ‘Let’s huddle up, because we want this to go well," he said. "They put me out, and seven hours later, I was in the ICU."
The recovery process, which began on April 4, was long and not without hurdles, but now, Ed and Kristie are living life fairly normally, except for regular check-ups with the organ transplant unit.
The Nelsons don’t know where the organs came from. They reached out to the donor’s family, but did not hear back.
Earlier in the year, Ed started thinking about the upcoming anniversary.
He’d already done so many things that he hadn’t expected. The couple attended his son’s wedding, and had other "firsts" that were special mainly because he hadn’t expected to experience them again — Christmas, family get-togethers, and celebrations.
"It’s everything — everything is a first now," he said.
So why go small for the anniversary of the lifesaving procedure? He invited more than a hundred guests, including the staff of Gift of Life Transplant House.
Gift of Life sent Ed a list of needed items — sheet sets, carpet cleaners, vacuums, and cleaning supplies. He also donated a 55-inch TV.
April is national organ donation month.
The general public is not invited to Ed’s party, but those who want to contribute to the cause can donate to the Gift of Life at gift-of-life.org/donation.
There will always be health obstacles, Kristie said, but on the whole, the organ donation was a priceless gift.
"Every day I wake up is a great day," Ed said.