Duayne and Nancy Johnson are counting their blessings this holiday season.
Last year at this time, a failing heart caused Duayne to spend Christmas in a hospital room surrounded by doctors, machines and mediocre food from the cafeteria.
But this year, the couple who still hold hands after 43 years of marriage say the spirit of the season is a little brighter after Duayne received the greatest gift of all — life.
In June, the retired Falls High School athletic director and active community member received a new heart allowing him to potentially live a longer, healthier life.
“I sit back and marvel at the fact that this has happened,” Duayne told The Journal. “I was actually able to be the recipient of a new heart. It’s a miracle.”
Duayne suffers from amyloidosis — a condition where amyloid, or insoluble fibrous, proteins are abnormally deposited in organs or tissues and cause harm. Symptoms vary widely depending upon where in the body amyloid deposits accumulate.
In Duayne’s case, the deposits got comfortable in his heart and would not allow the muscle to relax, he explained.
“It cannot be stopped,” the 69-year-old said of the condition he was diagnosed with six years ago. “Once the heart cannot relax and fill with blood, it doesn’t have enough blood to pump. When it doesn’t have enough blood to pump, it could be a long, slow end.”
The diagnosis left a heart transplant as Duayne’s only survival option.
If only it were that simple.
Duayne’s blood type is O positive, meaning donors with a matching blood type can give organs to people with any blood type, creating a high demand for O positive organs. This made getting a new heart more of a challenge for Duayne.
Despite his odds, Duayne said he and Nancy stayed positive through the experience and are thankful Duayne is able to share his success story with the community that helped him survive.
Going downhill
When Duayne discussed his condition with The Journal in October 2012 to promote the importance of organ donation, he was looking and feeling good. He had been on a transplant list for more than a year, but a medication called milrinone, which is used to stimulate cardiac function, allowed his life to stay “pretty close to normal.”
Shortly after, however, he said everything went downhill.
An infection at the milrinone injection site landed Duayne in the hospital Nov. 21, 2012 – the eve of Thanksgiving.
He traveled to the Mayo Clinic in Rochester where he had been doctoring since his diagnosis. Upon arrival, Duayne said doctors thought he reached a point that he wouldn’t be leaving the hospital without a new heart.
“I was relieved when he was finally put in the hospital,” Nancy said. “I knew he was failing...And I had so much confidence in the Mayo doctors.”
Staying positive
At the time Duayne was admitted, it was uncertain when – and if – he’d receive a heart.
“Doctors came in everyday and told me there was a heart out there for me,” he said.
Days turned into weeks and weeks turned into months. While Duayne said he was able to stay positive a majority of the time, he admitted there were days that were more of a struggle.
“There were times I said, ‘This is it, I’m cashing in my chips,’” he said. “It was a long haul and sometimes tough to deal with, but the goal was always in mind. And having Nancy as my wonderful support really helped.”
Nancy said she was able to accept that Duayne’s fate was out of her hands, but was appreciative of the community support the couple received on dark days.
“It was just astounding,” she said of the support. “Family, friends, acquaintances and even strangers reached out to us...It was wonderful.”
Still, there were setbacks.
In April, Duayne developed vasculitis, an inflammation of blood vessels. The infection kept him off the donor list for 30 days.
“That was scary,” Duayne said. “That was something we weren’t prepared for.”
Nancy agreed. “That was our most difficult time.”
A new heart
On June 11, Duayne just finished his daily pep talk with his doctor about eventually getting a heart, when a nurse told him not to eat or do anything – a heart was on its way.
“We were excited,” Duayne said. “A lot of things have to match up when receiving a heart, but (doctors) said it was a good chance.”
Still, Duayne and Nancy said they didn’t let their hopes soar too high.
Several months prior, a heart had come for Duayne, but the hospital rejected the organ. marking a letdown for the Johnsons and their family.
This time, however, fate was on their side.
After spending more than 200 days in the hospital, Duayne was a free man with a new heart June 22.
“Walking out of that hospital was a great feeling,” he said.
The couple say they know very few details of where Duayne’s new heart came from, but said they knew the donor was young and helped more than 20 people.
“We wrote to the donor’s family,” Duayne said. “We have not heard from them yet, but hopefully we will.”
Nancy said while her husband was in surgery she had a positive feeling of the outcome.
“We’ve had a good marriage and a good life together and I thought if this is it, it’s been good,” she said. “But I knew things went well the minute I saw him after...his skin was pink again.”
The Johnsons say they have a lot to be thankful for during the holiday season, especially to whoever gave Duayne a second chance.
“Someone out there had to give a life for me to keep a life,” he said. “I think this whole process has caused me to think things through a little bit more...Nancy and I are pretty lucky people.”
The couple urges people who are not organ donors to rethink the decision.
“You never know who you will help,” they said. “You never know whose life you can save.”
Becoming an organ and tissue donor is only a few clicks of the mouse away. Those interested can visit a number of websites including: www.life-source, org; www.donatelifemidwest.org/mn; or www.organdonor.gov.
