In six days, Zach Engelken will scuff his shoe on the pitcher’s mound, wind up and throw out the first pitch for the Kansas City Royals.
Just months ago, Engelken, a 31-year-old Seneca construction worker, was hooked to machines that kept his heart beating, knowing that a heart transplant was the only thing that might return him to a normal life.
A lifelong baseball player who once aspired to join the pros, that first pitch stands for every thing the University of Kansas Health Systems’ heart transplant program gave him back six months ago today, Jan. 17, when he became the fourth person in the program to get a new heart.
Engelken sported a No. 4 shirt on Sunday when he joined nine other heart transplant recipients for a backyard picnic as part of an informal support group started by transplant recipient No. 1, Rob Beck, to help each other take on the challenges of adapting to a new heart and lifestyle.
“You just think that you’re pretty much invincible when you’re young like that,” Engelken said of the months preceding his transplant when he was sickened from a virus that attacked his organs. Before the transplant, he received an LVAD, a left ventricular assist device that is implanted to help his heart pump blood.
His fiancee, Jennifer Melvin, was by his side through months before the transplant, watching as Engelken spent a week in a drug-induced coma and news for the family was not optimistic. Today, sitting on a sofa near him, she is thankful for care at KU Health that saved his life and gave them a future.
It was a theme reiterated throughout the late afternoon picnic, where family members and transplant recipients expressed gratitude for the team of people at KU Health that led them through the scary process and also for the donors and their families that made the transplants possible.
On July 22, Engelken will throw out that first pitch as part of the Royals’ Organ Donation and Transplant Awareness Night. Catching for him will be Andrew Sauer, a cardiologist and medical director of KU Health’s Center for Advanced Heart Failure &Heart Transplantation. The two practiced in Beck’s backyard while children played and the heart transplant recipients and their families laughed and talked.
It’s like a family gathering, said John Findlay, 44, of Liberty, Mo., who was the second heart recipient at KU Health.
“We’ve all really bonded a lot. We’re kind of like our own support group. What really helped me when I went on the transplant list, is I had some other transplant recipients that had come and visited me,” he said. “It was just so nice to be able to see somebody that had gone through the transplant, to see them walking, talking, basically leading a normal life. Me, as a transplant recipient, I want to do the same for anybody else who’s facing the same situation, share my experience, and hopefully get some potential recipients some hope.”
That was exactly Beck’s thought as the first heart transplant recipient at the program. Even before having his, he was determined to reach out to others on the waiting list and share his experiences and be supportive. He was sick for about eight years as his heart failed, and as he faced a transplant, he happened to meet a man on the golf course who had had one nine months before.
“At that point, when I got in the hospital, I just knew how much it meant – the doctors can tell you whatever they want, but seeing someone walk into that room or meeting that guy, Frank, who you were never able to tell he had a heart transplant, that’s what helped me the most. That’s what I was determined to do for all patients who came after me.”
Beck’s commitment has been strong. Annie Zheng, whose husband, Tony Zheng, received a transplant May 20 and sported a No. 10 shirt at the gathering, couldn’t find the words to adequately express her thankfulness for the transplant team but also for Beck.
She was on an airplane when her husband received a heart and couldn’t get home quickly. Beck went to the hospital and sat with him all night, telling her not to worry, he would stay there as long as necessary.
A Chinese immigrant who has been in the United States for 28 years, Zheng’s strong emotions overcame her English, and she struggled to make herself clear.
“We really love this country,” she said. “I talk to my family in Hong Kong and Canada, and everybody say I’m so lucky. The country (gave) for my husband a second life; we never forgot. We really thank you to the some people that gave the heart for my husband and the hospital that helped give him a really, really good life.”
A “new life” looks different for everyone, as does the technical aspects of each transplant and what led to them was also different. For Findlay, part of his joy in his new heart came with a return to music. A tuba player in college for the University of Wisconsin, he also played bagpipes. But he had to stop as his heart failed.
”It takes such an amount of expansive breathing, and it was too tough on my heart,” he said. “My heart would actually go out of rhythm when I played.”
But a few weeks ago, Findlay began playing again with the goal of preparing two songs for the Sunday gathering. The emotionally evocative notes boomed through the house, a loud and expansive reminder of what a healthy heart looks like.
Sauer and two heart transplant coordinators attending the weekend event said the support group Beck created and the familial feeling that was evident there can only help the healing process.
The two coordinators even laughed about how they had to adapt to the world of social media, its impact on their jobs providing support to patients and families as they answer questions and coordinate the transplant. The patients sometimes will reach out to each other to ask about symptoms, rather than calling them.
”All 10 of these people will tell you that the most informative part of the evaluation was when they actually met someone who had been through the actual transplant to know exactly what happened,” said Joey Crane, adding that the transplant team encourages everyone to be honest because it’s not all “all rainbows and unicorns.”
“It’s been great for them because they’re all very open with each other,” said coordinator Sarah Anderson. She and Crane will find out from one transplant recipient that another one had been having headaches.
“So we call them, and they say, ‘we didn’t want to bother you,’ ” he said, laughing a little at the efficient communications network the group has.
A heart transplant is tough, not only physically but emotionally. Crane said the acceptance phase during the evaluation can be difficult.
“They know they have heart disease, but hearing those words ‘you need a transplant’ really takes some time to mentally accept that,” he said.
Sauer said a supportive group like the one Beck has created makes a difference.
“I think it does because at the end of the day if you have ability to have support, you’re more likely to do the things you need to do to take care of your heart, to take care of your body,” he said. “We tap into the support group all the time for candidates that we have who are scared, who don’t know what they’re getting into. It’s one thing for us to try to explain what a transplant’s all about to patients. It’s very different when a patient who’s gone through explains it.”
KU Health System restarted its heart transplant program last year after stopping its first program 22 years ago. Sauer, who came to KU from Chicago to be part of the program, said patients are cared for by about 30 different people.
“It’s a big group, and it’s extremely intimidating for a patient to go through something like cardiac surgery, but to go through something like potentially an LVAD and then a heart transplant … I think the support group is probably an understated (benefit),” he said.
Sauer said the program is on target to do 10 to 15 transplants this year, and expects to do between 20 and 40 transplants annually within the next five years.
Beck will be happy to continue making shirts that reach eventually into the triple digits. The 11th transplant, in fact, has already happened.
For people like Ricky McElwee, of Kansas City, Kan., who got his new heart on Feb. 11, it’s tough to express how much the group’s support means.
“They’re the world,” he said. “I met this guy (Rob Beck) two days after my transplant and he opened up my life. We’re a happy group, believe that.”