The lives of more than 2,000 Minnesotans will be impacted by their placement on a list.
One of them is Duayne Johnson’s.
The retired Falls High School athletic director and active community member is one of the more than 2,000 Minnesotans whose names have been added to a list of people waiting for a healthy heart to be donated and transplanted so they may again lead healthy lives.
Although he is able to continue normal, day-to-day activities while his name is on the donor list, he knows it is one among thousands.
“The same amount of people are donating each year,” Johnson said. “We need more people to donate to match the demand.”
Johnson 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 Johnson’s case, the deposits have taken up residence in his heart and ultimately will not allow the muscle to relax, he explained.
“It cannot be stopped,” the 68-year-old said of the condition. “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 only solution is a transplant.”
Each day, there are more people like Johnson waiting for a transplant than there are organs available. That’s why Johnson and his wife, Nancy, are encouraging more people to make an active choice to become organ donors.
“We want to raise awareness or at least clear up some misconceptions about organ donation,” Nancy said of the couple’s efforts.
Diagnosis
Duayne was diagnosed with amyloidosis five years ago following a wrist surgery that alerted his doctors to an irregular heartbeat. Not wanting to take any chances, the Johnsons accepted a referral from a local doctor to visit with specialists at the Mayo Clinic in Rochester.
“That was a good thing,” Nancy said of Duayne’s decision to visit Mayo.
The couple say it didn’t take long for doctors to figure out that there was something causing the irregular heartbeat, but it did take several months to pinpoint the condition behind the irregularity.
“There are several types of amyloidosis,” Duayne said.
The next four years consisted of doctor appointments and Duayne’s health weakening.
“During one visit to Mayo, it was suggested I get on the transplant list,” Duayne explained. “Had I been told that five years ago, I’d probably have a new heart right now.”
Nancy said her husband is lucky to be placed on the transplant list and agreed that to get there was “a very long process.”
“He was getting progressively worse in the first four years following his diagnosis,” she said. “This is the best he’s been in awhile.”
The next step
Feeling and looking good can be attributed to Duayne taking milrinone, a mediation used to stimulate cardiac function. The medication is fed into the heart constantly so that it will pump harder and accept more blood. The medication has been a permanent part of Duayne’s life for 14 months. When asked if his heart will be able to hold out for a transplant, he didn’t have an answer.
“That’s a question I’ve had for Mayo.” Duayne said. “And they don’t know. Milrinone doesn’t work for everybody and I’m told eventually, it will not do what its supposed to do,”
With that in mind, the Johnsons know Duayne will have to get worse before he gets better.
“To get a heart, I have to get sicker, I have to be hospitalized,” he said. “The process seems strange, but there are a lot of people who need hearts.”
Should Duayne receive a heart that would be compatible with his body for a transplant, he will be on medication for the rest of his life, but should return to “fairly normal” health.
“I just hope there is a heart out there for us,” Nancy said.
Becoming a donor
In June, Minnesota Public Radio news reported that the Minnesota Department of Public Safety launched a new program in June aimed at increasing the number of organ donors in the state.
Now when drivers apply for or renew their driver’s license, they can voluntarily donate $2 to raise awareness of organ donation. Similar programs in other states have raised as much as $350,000 a year.
About 60 percent of Minnesotans are registered organ donors, which is well above the national average of 42 percent, but the Johnsons hope to recruit more through their efforts.
Nancy said raising awareness and clearing up misconceptions of organ donation is the couple’s focus until it becomes Duayne’s turn to get a heart.
“We’d like more people to sign up to become a donor or at least consider it,” Nancy said. “It may not impact Duayne in any way, but it’ll hopefully help someone else.”
She added that up to 60 lives can be saved from organ and tissue donation. While age and medical history are factors in organ donation, most people should be able to donate, Nancy said.
Duayne said he understands his wait could be far from over and “if nothing happens, I know I’m going to die, it’s that simple. I’m to that point where I can accept that. For awhile it was hard to deal with, but I’m there now.”
He encouraged people going through similar circumstances to keep an advocate by their side.
“I would never be anywhere near where I am without my wife,” Duayne said glancing at the teary-eyed Nancy. “She’s been a great partner on this whole thing. We appreciate each other.”
“We don’t like what has happened to us, but I really feel we’ve had so many good things in our lives,” Nancy added. “We’ve had a good 42 years of marriage and it can’t get any better. I have confidence Mayo will do the best possible for us, and that may mean we won’t get a heart. We realize (the future) is out of our hands. It helps to live in such a supportive community.”
She said that her hope is that Duayne doesn’t fall under the statistic that shows that 18 people die each day waiting for a transplant, and she says she’s grateful the couple live their lives as normal as possible.
“I’m doing well,” Duayne summed up. “Right now, that is what matters.”
To become 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.
