June 19, 2019
Bert and Cathy Carlson were teenagers when they married and began a life together in southeast Kansas. That life included Bert's service in the U.S. Army, a self-built welding business, the family ranch and children, grandchildren and friends.
"Today, I'm retired," Bert says. "I've got 5 acres and my wonderful wife. And I'm sure thankful for that."
The gratitude was born of uncertainty. A decade of heart problems threatened Bert's life until collaborative care across communities and a heart transplant gave him a new beginning.
A complex journey
The Carlsons' home of Fredonia, Kansas, is 110 miles south of Topeka, Kansas, and 50 miles north of the Oklahoma state line. When Bert had a mild heart attack 9 years ago, the care team at his local hospital discovered an aortic aneurysm, repairing it before it ruptured.
"That was the beginning of my journey," Bert says. "My heart was never the same after that. I was told to expect a downhill slide, but that we'd make it as slow a slide as possible."
Several years later, Bert learned – in a frightening manner – that his heart was no longer pumping sufficient oxygen throughout his body. He passed out while driving, coming to in the middle of the highway. Back in the local hospital, the care team implanted an emergency pacemaker, soon followed by a defibrillator.
"I felt like that thing would blow the top of my head off," Bert recalls. "It felt like a lightning bolt. It would hit me full force and curl my toes." He was transferred to The University of Kansas Health System's St. Francis Campus in Topeka, Kansas, into the care of cardiologist John Joliff, MD. There, evaluation revealed that Bert's defibrillator had been shocking him up to 37 times a day.
"That was some kind of record, they told me," Bert says. "They were really good to me there, and after 60 days in the hospital, I was well enough to go back home."
At Bert's next follow-up appointment, Dr. Joliff told him he'd done all he could to slow the progression of Bert's heart disease. He introduced the possibility of a heart transplant.
"I didn't want that," Bert says. "I didn't want to take a heart from a young person who needed it. I asked, 'What about an artificial heart?' They jumped right on that and referred me to the specialists at the main campus."
"It is very difficult as a physician to watch a patient deteriorate, especially when we have exhausted all conventional medical therapy," Dr. Joliff explains. "Mr. Carlson had progressive symptoms despite maximal therapy. It was very gratifying for the cardiologists at The University of Kansas Health System St. Francis Campus to work as a team with our colleagues at the Kansas City Campus to evaluate Mr. Carlson for the next options."
A change of heart
In Kansas City, Kansas, Bert saw a cardiology team. Unfortunately, it was determined that Bert's heart was in too bad of shape for him to receive a ventricular assist device.
"They said my only chance was a new heart," Bert says. "I said, 'Okay, let's look into it.'"
His name on the transplant list, Bert settled in to wait. Given his health status, he expected to wait about a year. But further deterioration altered that forecast. Bert's status was updated to 1A.
"That meant the next available, matching heart would be mine," he says. "They got me tuned up to wait. In 24 hours, they found the heart, and I got my transplant."
While Bert was excited to be on the road to recovery, it wasn't an easy road.
"There's a lot I don't remember," he says. "I'd been so close to the edge, and my body just didn't want to respond. But top-notch care got me back on my feet."
A powerful team
Bert's care team included multiple specialists in fields including cardiology, advanced heart failure, transplant, nephrology, hepatology and infectious disease. It also included nurses whose warm and compassionate care guided Bert toward his turning points.
"The floor nurse in Topeka, Angie, was absolutely wonderful," he remembers. "When I was at my lowest, she was the one who pushed me to focus on exactly what I wanted to live for. I decided I wanted to see my granddaughter graduate. And I did that. Angie is the one who put me on a positive track."
In Kansas City, Sarah Anderson, RN, was Bert's touchstone.
"She's the best," he says. "She put up with my sense of humor – if you don't have that, where are you? – and got my mind off my problems. She got rough on me when she had to, always with a smile, but she got her point across. I have great respect for her."
"We meet patients when they're at their sickest and most vulnerable," Anderson says. "It can be a chaotic and scary time, and we strive to be the familiar face, the constant, in a complex process that involves many providers. Bert, with Cathy always by his side, is absolutely a fighter."
According to the cardiothoracic surgeon who performed Bert's heart transplant, "Without a doubt, the team was the key to Bert's recovery. We have worked extremely hard to form the best possible team, and the result is care that is second to none. Doing our best to ensure patients' success is what we're here for."
Care close to home
Today, Bert is doing and feeling well, but receives regular care and monitors his health closely. Collaborative care teams help him remain as close to home as possible for as much of his care as possible. He receives blood draws locally in Fredonia. He has physical therapy in nearby Chanute. His medications are mailed from Kansas City to his home. And he visits the cardiac catheterization lab in Kansas City.
"The relationships we have with doctors like Dr. Joliff ensure patients have access to high-quality services closer to home," the surgeon says. "They can see a local expert whenever possible, yet have ready access to specialty care available only at a large, academic medical center. They can count on our collaboration to help them achieve the best outcomes."
"When Mr. Carlson returned to see me after his transplant, I saw a complete transformation," adds Dr. Joliff. "A patient who was slowly dying now had a new lease on life. His turnaround was one of the best I've seen in 25 years of practice. We all thank the dedicated team of nurses, staff and providers that make it possible to provide hope and health to the patients of our region."
Bert could not agree more wholeheartedly.
"I've come a long, long way since I was looking down that barrel," Bert says. "The hospital at St. Francis Campus is an excellent hospital with excellent doctors, especially because they're wise enough to know when a patient needs something more. The University of Kansas Hospital in Kansas City is that next step above. They are top quality. There's nowhere else in the world I would recommend more. I am so very thankful for all that everyone has done for me."
He's looking forward to getting back to some light work and maybe doing a little camping with Cathy.
"I ask myself now, what am I going to do with this new heart I've been given?" Bert says. "It can be a lot to weigh on the mind. I'm ready to figure out my next goal in my life, ready to go out and start living."
Patient testimonial: As with all treatments, individual patient results vary. It is important to discuss your treatment options with your healthcare provider.