Crosslake man shares the good news of organ donation
CROSSLAKE -- Paul Kohl, Crosslake, was born with a bicuspid aortic valve. His condition was exacerbated by rheumatic fever at age 10. He had an aortic valve replacement at age 33 and a mitral valve replacement a year later. A flu-like virus settled in his heart in 1994 with congestive heart failure. A pacemaker was implanted in 1997. Still his condition deteriorated.
Kohl needed a new heart. He shared his story as National Organ and Tissue Donor Awareness Week, April 21-28, approached.
Kohl was admitted at Abbott Northwestern Hospital in Minneapolis Nov. 16, 1998. Then he waited.
Kohl needed a heart specifically from a donor with blood type "O", and it had to be proper for his size and weight. Since a heart from a donor with blood type "O" is universal and can be used in patients with any blood type, Kohl could wait a long time if there were patients who were in poorer condition and had a higher priority.
So, there were 10 or more heart transplants just in his hospital while Kohl waited.
"You never know," he said. "They can say your wait is going to be a long time, and then they call the next week. ... You never know when you are going to get your match."
And there are patients in this region waiting at the Mayo Clinic in Rochester, Fairview-University Medical Center and Abbott. It's a matter of priority and best match.
Kohl wasted away. His kidneys were "just sort of hanging in there." He could eat and eat and not put on any weight because a good blood supply is needed for the body's systems to work well. His hair turned gray and thinned out, and he ate, slept and went everywhere with an IV pole and ECG wires on him.
While Kohl waited, there was plenty of time to get to know the hospital staff and the other waiting transplant patients. He made many friends as people came and went. There were children and even a brand new mother waiting for new hearts.
A man younger than Kohl came in to be evaluated for a heart transplant. By that time his body had deteriorated to a point where he couldn't have a heart. He knew he wasn't going to make it. He came in thinking he'd have a chance at life, and then he was told he wasn't going to have any time at all. This remarkable man did everything he could to make it as easy as possible for everyone he cared for.
"I had some neat conversations with Victor," said Kohl. "He was at such peace. It was my first experience with someone like that. It was so remarkable, indelible. It makes you look at things in a completely different way. Friends, life is fragile, enjoy each other while you can."
Attitude was a big part of getting through the waiting. There were the patients who would say to Kohl after they'd been there for a couple of weeks, "Gee you look like you're about ready to get out. How long have you been here?"
"Oh, I've been in here seven months," he'd answer. They'd just clamp down after that -- they'd been thinking, "I can't stand it anymore. I just have to get out."
But Kohl was happy and truly grateful to be in the hospital. He wanted to be there because he knew it was his only opportunity to live long enough to get a new heart.
"We made the best of a bad situation. The bottom line is that I survived and came out with no complications. I was in the hospital all that time and came out with a wonderful gift, a new heart. And here I am, still walking and talking three years later."
Kohl got his call May 23, 1999. He called his family and rounded all the staff up for a group picture. His positive attitude and experience with other recipients who'd gone before him helped him remain relatively calm as the May 24 surgery approached.
Ten days after the surgery, and 199 days since he'd entered the hospital, Kohl went home. He said he's only recently "become a real person." The drugs had him pretty out of it for several months.
"And I still have some strange little limitations -- medical side effects from the drugs. It's so much better than being where I was or being dead. I'll take this any day. I love my new heart."
And Kohl shows that love and sense of responsibility for his precious gift by making sure he takes good care of his new heart.
Kohl used to go outside and drive the riding mower to get to the upper or lower levels because he couldn't use the stairs anymore.
"Now you know what I do for exercise?" he asked. "I take the stairs about 30 times a day just because I can."
In addition to recovering well, Kohl has developed a unique relationship with his donor's family. Donor and recipient are allowed to exchange anonymous letters. If things go well and everyone agrees, they may eventually meet. Some people don't want to know about the person on the other end of the transplant. It's a very personal and emotional situation that everyone handles differently.
Kohl's donor was a young man and new father named Dustin Hart. His mother, Connie Hart, needed the satisfaction of knowing those whom Dustin's death touched. It makes her feel like it wasn't for nothing.
Kohl met Connie for the first time March 24, 2001, at her home in Elizabeth. "I didn't want to disappoint the donor family. I had no idea at all what a mom must think. She loses an 18-year-old son, and here's this old guy knocking on the door."
But Connie welcomed Kohl with open arms and a sign that said, "Welcome to our family, Paul!" Together with Dustin's friends, Connie has organized an Adopt-a-Highway cleanup in remembrance of her son. So Kohl traveled back to their Minnesota home to help pick up the highway and have a potluck dinner with Dustin's family and friends. It was hard at first, but it gets easier every time he sees them.
Everything is getting better and easier with time. And Kohl feels lucky to be able to say he has more time, a wonderful heart and great new friends, his donor family.