When you’ve been strong and athletic all your life, it’s easy to shrug off sporadic symptoms, chalking them up to stress, overwork or dehydration.
That’s how it worked for Tim DeGeest, 46, a lifelong athlete.
He remembers blacking out back in his high school wrestling days. In the years since, he would pass out from time to time after physical exertion.
When he hit 40, fainting spells started happening more frequently—but still not often enough to cause him alarm.
A busy father of four young children, Tim figured this happened sometimes as you got older.
You work out, you get tired, you feel lightheaded.
Not until he passed out while headed into a football stadium—smacking his face on the pavement and coming up bloodied—did he find out he had a heart problem.
The discovery came to light when he went to get stitches on his face.
Rather than patching him up and sending him on his way, the doctor at a Spectrum Health urgent care asked questions and grew concerned.
“She refused to stitch me up and wanted to send me downtown to get checked out,” Tim said.
He drove straight to Spectrum Health Butterworth Hospital emergency department, where providers administered an EKG. Not only did the test register an abnormality, but his heart went into ventricular tachycardia right there in the emergency department.
The dangerously fast heart rhythm earned Tim an admission to Spectrum Health Fred and Lena Meijer Heart Center.
“Long story short, I was in there for five or six days,” Tim said. “They put a defibrillator in me and then I had a bunch of cardiologists from there, trying to figure out exactly what was going on.”
At the time—fall 2016—his heart’s pumping power measured far below normal. Doctors put him on medication therapy and brought him in for frequent follow-ups.
Despite his healthy lifestyle, Tim had heart failure.
The diagnosis explained a lot, said Carrie DeGeest, Tim’s wife.
Before his fainting spells ramped up, the couple would often go running together, she said. Carrie would push their youngest child in the stroller while the older kids rode their bikes.
“Tim would always be able to get out there and go for a couple miles and just leave me in the dust,” she said.
But with the passing of time, the scenario flipped.
“I’m still pushing the stroller, but I’m kind of leaving him in the dust. I was like, ‘Man, that’s so weird.’ And I remember him saying, ‘Oh, I’m just getting older,’” Carrie said.
One morning in 2017, Tim woke up paralyzed on his right side.
Recognizing this as a stroke symptom, he alerted Carrie, who called 911.
He soon arrived at Butterworth Hospital, where the neurology team hurried to remove the blood clot using a catheter procedure, restoring blood flow to his brain.
Thankfully, Tim recovered quickly, without long-term damage.
In the aftermath of the stroke, cardiologist David Langholz, MD, advised Tim there could be a heart transplant in his future.
The stroke had resulted from his heart issues. His cardiac function showed continued decline.
Soon after, Tim became a patient of the Spectrum Health advanced heart failure program.
“His presentation was both heart failure and also recurrent heart rhythms which are not compatible with life,” said Milena Jani, MD, a heart failure specialist with the Spectrum Health Heart Optimization and Evaluation clinic.
Though the cardiology team had diagnosed his disease as dilated cardiomyopathy—a weakened and enlarged heart muscle—they had a hard time pinpointing the cause.
When the standard diagnostic tests yielded no answers, they sent Tim for genetic testing.
Results showed a rare genetic mutation that predisposes a person to diseases of the heart and skeletal muscles.
“It showed that he had this condition known as arrhythmogenic cardiomyopathy, which comes from the desmoplakin gene mutation,” Dr. Jani said.
Tim was the first to learn that this mutation runs in his family.
It’s understandable Tim didn’t recognize his heart disease for what it was, Dr. Jani said.
“For somebody like Tim, who has been a go-getter and fit and well all his life … it’s easy to ignore symptoms and attach them to something else,” she said.
“He probably put off heart disease for as long as he could, without knowing it, by being completely healthy. Sometimes genetics just catch up with you.”
Throughout 2018 and part of 2019, Tim pushed himself despite persistent fatigue.
He continued working as a commercial construction project manager. He kept up with his growing family and took part in church activities.
In July 2019, however, his health took a turn.
While lifting weights one morning, Tim’s defibrillator kicked in—not once, but six times.
“It felt like a baseball player was hitting me as hard as he could across my chest with a bat,” he said.
“I literally thought at that point, ‘Wow, I think I might be dying,’ because the defibrillator was not bringing my heart rhythm back into pace.”
He went to the hospital, where the electrophysiology team replaced his device with one that would provide greater control of his heartbeat.
While this new device bought him time, it couldn’t bring healing.
In September—three years after the incident at the football stadium—Tim began the transplant evaluation process. He got approved for the transplant list.
The rest of the year felt like a race against the clock: Tim and Carrie had begun building a new house in Rockford, Michigan, with Tim as general contractor.
No one could say whether they’d be able to move in before Tim’s heart ran out of time.
“The last week or two, I could hardly even put a doorknob on a door,” he said. “I was so weak.”
Just before Thanksgiving 2019, with loads of help from family and friends, the DeGeests moved into their new home.
A sense of calm
The following week, Tim and Carrie visited Dr. Jani in the transplant clinic and discussed whether the time had come to move forward with the transplant.
Lab results confirmed that it had. Three days later, Tim checked into the hospital.
“I remember one of the doctors saying they were amazed that I came walking into the hospital—that everything was so bad, the output of my heart and everything else,” Tim said.
The transplant team measured his cardiac output using Swan-Ganz catheterization. Based on the results, the interventional cardiology team placed a balloon pump in his aorta. This would keep the blood pumping while he waited for a donor match.
Tim spent most of December in the ICU waiting for a heart. He and Carrie processed complex emotions throughout their wait.
“It is very sobering to think that someone has to die for Tim to live,” Carrie wrote on Tim’s CaringBridge page.
At the same time, Tim said, he felt a profound sense of calm.
“I don’t even know if I can explain it very well. It’s just, throughout the whole process, I’ve been completely at peace with it,” he said.
“You know, my faith in God is so strong and I just trusted that everything would turn out as God had planned—and left it in God’s hands.”
Not that waiting for his story to unfold was easy. In the ICU, the weeks passed slowly for Tim. To brighten his days, the nursing staff brought in board games and Christmas lights. They spent time with him in conversation.
“I really took to him and wanted to make him feel less like a patient and more like a person,” said Joseph Droppers, NP.
“So after talking with him—and I was his nurse for multiple, multiple days—I got really close with him.”
As the nursing team supported Tim in the ICU, the family’s community rallied around Carrie and the kids as they shuttled between home and school and church and hospital.
“God was just kind of bringing us through, using people in our lives to walk us through that whole journey,” she said. “We couldn’t have gotten through this so well without them.”
The gift of life
On Dec. 31, a transplant team member woke Tim with the news that they’d identified a match for him.
The transplant came on New Year’s Eve 2019.
That morning, after sending Tim off to the operating room, Carrie notified his CaringBridge community, writing, “Dear friends and family, WE HAVE A HEART!”
His transplant surgeon, Marzia Leacche, MD, said the timing of this transplant made it particularly poignant.
“There’s nothing better than on New Year’s—during the holidays—to transplant a heart. It’s very, very meaningful to be working during the holidays,” she said.
Both affected families loomed large in her mind as she approached Tim’s transplant.
“You’re really trying to do your best for two families—one that’s cheering and the other that’s grieving the loss of their loved one,” Dr. Leacche said.
“You want to make sure that … the patient has a very good outcome, because a good outcome for this patient means a good outcome, in a certain way, also for the donor family.”
Tim’s transplant surgery went just as planned.
And true to form, Carrie said, Tim nearly set a record for the shortest time before discharge after transplant.
Even so, the rehab process demanded more from him than either of them expected.
“No matter how much the transplant team tries to prepare you for the recovery period, you’re just never truly ready. It’s hard,” Carrie said.
Tim admits he wanted to see bigger gains faster. More than once, his post-transplant coordinator, Megan Stickroe, RN, had to remind him not to overdo it.
“We had a couple conversations about ‘Your head may want to be going 100 miles an hour, but your body isn’t ready to go 100 miles an hour yet,’” Stickroe said.
“He just had that drive—and he still does—to be the best that he can be. … He’s a great steward of the gift that was given to him.”
Though he challenged himself at every turn, it took a full year for Tim to feel that his body—and his life—had returned to some version of normal.
Now, two years post-transplant, he’s achieved most of his goals, including resuming his longtime role as a high school wrestling official, both locally and at the state finals.
For the whole family, Carrie said, this journey has brought lessons they never anticipated.
“We’re kind of forever changed in the sense that even our kids have more empathy for people going through difficult times, health journeys,” she said. “And I would say that’s true for Tim and me as well.”
Another thing that will never be the same for Tim? New Year’s Day.
Now it’s not just a moment to turn the page on the old year, he said, but a time to celebrate the “miracle that I’m still alive.”
I’m so grateful to read this story. Tim and my youngest son were good friends in high school, and Tim’s transplant came just over a year after my own double lung transplant. My wife and I followed his journey closely on Caring Bridge and continue to be inspired by Tim and Carrie’s faith and courage.
So very grateful to relive your amazing story and see the images of you and Carrie. Grace upon grace…
Tim, what a wonderful testimony to God’s faithfulness, your perseverance, and a huge family of people who loved you thru it all. I’m honored to be a part of it. God bless you all!
Although I have never had the privilege of meeting Tim I have had the privilege of meeting Carrie. I’ll never forget her strong faith and strength that she had as she went through this very difficult time. You have been an incredible testimony of your faith in Jesus.
Such a powerful story of God’s grace, love and provision! You have taught us so much through your faithful walk with God during such a tremendously difficult time. Thank you for sharing your story!
Your faith is an inspiration. Thank you for sharing your story. Dr. Leacche is amazing! She did my OHS in April of 2019 and I will be forever grateful to her. God bless you and your family.❤️
Your story is an amazing one and I’m so glad you have shared it publicly. Love that you were able to share your faith and how you were in God’s hands thru it all. My husband Gary had triple bypass surgery at Meijer Heart this summer and we are so grateful for the great care and outcome. Thankful you are doing so well! Love the family pictures!