For team of local doctors and volunteers, it’s all about heart
Larry Dixon and Tim Johnson, both of St. Peters, didn’t have a lot in common until their hearts started to fail.
Dixon, 33, had never been sick in his life other than a cold – he’s never even had the flu. “Never a broken bone, never really a heart problem in the family,” he said.
Tim Johnson, now in his 60s, knew early on that a long life was problematic.
“Mine was genetic. There wasn’t anyone in my family who lived more than 51 years,” Johnson said. At one time, he weighed 340 pounds. “I was pretty much a walking heart attack.”
Now, both are members of an exclusive club. They are among the more than 800 heart transplant patients who have received care at Barnes-Jewish Hospital in St. Louis, the only heart transplant center in a 300-mile radius. Surgeons’ skills and anti-rejection drugs have helped to keep Johnson and Dixon alive, but both men also are quick to point toward the support of their families, friends and caregivers – including a support group of people who have shared the same experience.
Two and a half years after receiving his new heart, Larry Dixon is doing fine. He and his wife, Cara, are expecting a baby in October. They may be the first, or among the first, in the Barnes transplant program to have children after the operation.
Ten years after his surgery, Johnson is happily active. “After that (the surgery) I didn’t know you could feel this good.”
Both men are among a group of roving “ambassadors” who are members of the Heart Transplant Association of St. Louis (HTA), the support group that meets with heart and transplant patients and their caregivers.
Providing a helping hand
Transplanting organs, while often a last option, has become an increasingly viable one because of research and technology advances. Barnes-Jewish transplant teams perform more than 400 kidney, heart, liver and other organ transplants a year. Its transplant-certified cardiologists treat 2,500 patients facing heart failure.
The HTA, which includes transplant survivors and families, formed in 1987 two years after the heart transplant program began at Barnes-Jewish. Vince Holman, president of the association, said it’s dedicated to providing emotional, educational and financial help to pre- and post-transplant patients, their families and loved ones.
Holman said the association also has raised $1.5 million for the hospital foundation and perhaps as much as $35,000 annually for heart failure and transplant research. Meetings and picnics draw hundreds of people and the association has its own website and newsletter. Help also has come in a myriad of other ways, such as paying for funerals, helping to rewire a home so a ventricular support device could be plugged in, and even retrieving a heart transplant patient who ended up in a homeless shelter.
The Casey Ann Holman Memorial Association, founded in 2002 by Vince Holman and his family, also provides four apartments that are available for transplant patients and their families who often have to stay near the hospital. The Holman Association was established in the memory of Vince Holman’s 22-year-old daughter, Casey Holman, who passed away after receiving a heart transplant.
Holman said 16 trained transplant survivors are available to go to the hospital and meet patients and caregivers before and after each operation. Those volunteers also assist heart patients receiving a battery-powered left ventricular assist device or LVAD, which helps pump blood through weakened hearts.
“There is no one who can talk to a transplant like another transplant,” Johnson said. After surgery, the transplant volunteers present patients with special T-shirts with their name and the number of their transplant. Larry Dixon was number 678 and he remembers Glenn, a 19-year survivor, and Johnson greeting him after his operation.
“These guys are doing great, they were having fun, they were energetic, laughing and telling stories,” Dixon said.
Johnson and Dixon, who these days are among the volunteers, say they can see the worry that patients have before and after the operation.
“When you see somebody who has just got out of their transplant they’re on that bed five days with their eyes open; I can see in their eyes, they’re just like ‘Oh my God, I’m breathing’ and they look at me,” Dixon said. “I’ll grab their hand, and say ‘you’re going to be fine.’”
That help extends to caregivers and families.
“I think in the beginning they were more helpful for me than they were him,” Cara Dixon said. “It was so good to see all those transplant patients sitting there along with their families and to be able to talk with their wives and husbands and children and know that I wasn’t the only one who had gone through that big of an ordeal with my husband. We have amazing friends, (but) it’s different when you find somebody who actually knows what you’ve gone through.”
Gene Ridolfi, director of transplant services for Barnes-Jewish Hospital, said the association and its volunteers “fills a huge gap in some of (the hospital’s) needs.” Ridolfi said the transplant population is broader these days than just heart transplants. “But in all transplants, the family support piece is such an important component in helping these patients through the process.”
Judi Lavy, of O’Fallon, said she and her family didn’t know where to turn when they had questions about her sister, Lynn, receiving a heart transplant. Her sister had a transplant in May and is doing great.
“Oh my gosh, it’s like she feels like a new person,” Lavy said. “She says ‘I’m a teenager again.’ It’s like a completely new life.”
Doctors and nurses are often busy and Lavy said it was good that someone could explain things.
“As siblings, we just panicked. We didn’t know what to do and we were there every day during the bad part of it,” Lavy said. “You sit there and you worry more because you don’t know. It’s not knowing that scares you.”
And despite the surgical skills and technology, there is still plenty to be scared about – just ask the Dixons.
A patient’s long journey
Treating a failing heart is daunting. Not all patients are transplant candidates because they may be too weak or too heavy or have other conditions that preclude it. LVADs implanted in patients serve as a “bridge to transplant” for many patients and can help build their strength, but LVADs are often uncomfortable and difficult to live with – and they aren’t always successful.
An LVAD saved Dixon’s life for a time and allowed him the chance to receive a suitable heart. But eventually it became a question whether the quality of that life was worth it. Dixon remembers talking to a surgeon who said “this isn’t a way to live.”
For Dixon, heart disease came out of the blue. In 2008 he caught a cold and went to a doctor, who didn’t like what he saw in Dixon’s tests. Medications helped for two years and Dixon and Cara were married in September 2010. Then, he caught another cold the week of his wedding and it wouldn’t go away. In November, he developed pneumonia and things went downhill. Dixon was diagnosed with congestive heart failure. Wearable devices eventually led to the LVAD.
“It got so bad that I wasn’t working and I was just sitting home depressed,” Dixon said. “I couldn’t do anything but just sit in the chair. I couldn’t sleep. I was up all night long, and I couldn’t do anything.”
Further tests results continued to be bad. But because the LVAD put such a strain on his body, it took 15 months for Dixon to lose weight and get in better physical shape, making him suitable for a transplant. He was on the transplant list another seven months. The Dixons were always on call and couldn’t be more than four hours away from the hospital. If he had a cold or was sick, an available heart could go to the next person on the list.
“It was definitely nerve wracking; every time his phone rang, I would stare at him and wait to see if I could figure out who was calling,” Cara said.
The first call about a potential heart came on their wedding anniversary in September 2012, but tests showed that the heart wasn’t suitable. Months went by.
“In December, right before he got his transplant, a week or two before Christmas, his doctors just said that if you don’t get a heart very soon, you’re not going to make it,” Cara said. The right call came on Jan. 3.
“We got the call at midnight and we were driving in the middle of night down to Barnes. I was just a nervous wreck, crying and shaking,” Cara said. “I looked over at him and he was cool and calm. I said ‘aren’t you nervous’ and he said ‘No, I’m excited, I’ve been waiting for this.”
He doesn’t remember much about the operation, “until they woke me up in the middle of it.” Cara said the surgical team wanted to make sure he hadn’t had a stroke and woke him several times during 10 hours of surgery. The operation usually takes about eight hours. “He always has to be difficult,” Cara said.
“Immediately after we walked into his room, he looked better,” she said. “He had all those tubes and wires coming out of him (but) his color had come back and it was like he was a whole new person.”
Dixon was on a ventilator for seven days, mostly sleeping. “The pain wasn’t that bad,” he said. The hard part was rehabilitating muscles that had already atrophied. “My legs were like wet noodles.”
Dixon went home to resume a life he hadn’t known for years. “To explain what it’s like when I wake up, it’s like I want to do stuff immediately like mow the lawn; there was so much energy,” he said.
“His dream was to work in the garage on cars,” Cara said.
The baby is another dream. “Our dream was always to be parents. My whole life I wanted to be a mom, so that was very difficult to wrap my head around,” Cara said. “We had to make sure he was healthy before we could have a family. He wants to be a good dad and he wouldn’t have been able to be around very much with the heart problems and being in and out of the hospital.”
Today, Dixon is more sensitive to heat and cold. He stays indoors during 90-degree-plus days and has to wear a coat and gloves when temperatures drop to the 60s. He walks, eats healthy and drinks three 32-ounce containers of water each day – a promise he made to a kidney specialist who let him go home. “Now, it’s two and a half years out. People look at me and I say I’ve had a heart transplant, and they are like ‘really?’” he said.
He’s going back to work this month working on web applications for the state of Missouri. Cara works as a bank teller supervisor. Although his insurance covered much of his medical expenses, his portion of those bills are still high. A heart transplant can cost millions of dollars.
“People ask me how I could stay so positive,” Cara said. “I had to be his rock, and I had to be there for him.”