‘The perfect match’

Facing end-stage heart failure at age 19, Nick Jaenicke held on long enough to receive a donor heart—just like his brother and grandfather before him.

‘The perfect match’

Nick Jaenicke had just graduated from Spring Lake High School and finished saving up for a new car.

He’d enrolled at Davenport University for the fall.

The future looked full of promise.

But under the surface, life held uncertainty.

Nick had a congenital heart defect called transposition of the great arteries—at birth, the two main arteries carrying blood from his heart were attached to the wrong chambers.

Years earlier

At 1 week old, he underwent a corrective procedure called an arterial switch. This surgery swapped the aorta and the pulmonary artery, placing them in their normal positions. As a result, Nick enjoyed an active childhood.

Snowboarding, soccer and lacrosse became his passions.

As a high school freshman, though, he felt his stamina fade. Despite his athleticism, he struggled with shortness of breath.

“My heart started to fail and they found out that my valves were leaking,” said Nick, now 20, whose family calls him Nicky.

Along with the severe valve leaks he had also inherited his family’s predisposition for cardiomyopathy.

So Nick’s first high school lacrosse season became his last. At age 16 he had his second open-heart surgery: replacement of the aortic and pulmonary valves.

Even before this surgery, Nick and his family knew it would only buy him time. Eventually, his heart would wear down.

The question was how long his doctors could postpone the inevitable.

“It wasn’t certain at that stage how long he would go with the cardiomyopathy before he might need transplantation, but we have seen patients who have improved with stopping the aortic valve leak,” said Marcus Haw, MD, Nick’s pediatric cardiac surgeon at the Congenital Heart Center at Spectrum Health Helen DeVos Children’s Hospital.

The valve replacements, along with the placement of an implantable cardioverter-defibrillator to prevent cardiac arrest, got Nick through the rest of his high school years and onto the cusp of his college career.

A family story

A week or two before classes started in the fall of 2019, at a regular checkup with his adult congenital cardiologist, Stephen Cook, MD, Nick learned his heart function had deteriorated significantly.

The time had come to meet with the Spectrum Health heart transplant team and undergo a pre-transplantation assessment.

The scenario the family had always held at a distance now felt alarmingly close.

“It kind of hit us hard,” said Rhonda Jaenicke, Nick’s mom. “I mean, it was something we expected someday, but with Nicky it just seemed like it was happening really quickly.”

Here’s where Nick’s story intersects with that of his brother Tyler, 26.

Although Nick traveled his own medical path, he ended up in the same place as Tyler, who had a heart transplant in 2016—the same year as Nick’s valve replacements.

With a family history of cardiomyopathy, the brothers also have a grandfather who received a donor heart in the late 1990s. Nick was the youngest of the three—and the only one to have been born with a structural heart defect.

And in October 2019 he became the first Spectrum Health cardiac patient to have pediatric and adult surgeons collaborating in the operating room during transplantation.

Before that day came, however, Nick would have a hard month to endure.

It started the night his defibrillator fired off in his sleep in response to ventricular fibrillation. He felt weak the next day, with no appetite. But Nick had a certain toughness. He shrugged off his symptoms.

When things grew worse a couple days later, it was almost too late. Tyler picked him up from Davenport and drove him straight to Spectrum Health Butterworth Hospital.

Nick wouldn’t leave the hospital until 54 days later.

“When he showed up, he was very sick and decompensated,” said Theodore Boeve, MD, who directs the Richard DeVos Heart & Lung Transplant Program at the Spectrum Health Fred and Lena Meijer Heart Center.

The team listed Nick for transplant on Oct. 8. He spent the next 17 days in the critical care ICU, fighting for his life and waiting for a donor heart.

Doctors inserted a balloon pump to support his heart. They put him on IV medications to boost his heart rate. Yet Nick continued to struggle, continued to experience arrhythmias.

One morning, as he sat eating Fruit Loops—the only breakfast food that sounded good—Nick’s favorite ICU nurse, Joey Droppers, RN, came in to sit with him.

Moments later, Nick suffered an unusual complication, a balloon pump rupture. Dr. Boeve and the critical care team rushed him into emergency pump replacement surgery.

It would be one of many tense moments in the ICU.

“All we remember is that we prayed a lot,” Rhonda said, her voice breaking.

“It was almost like we were living hour by hour,” she said. “But he improved slowly. And the doctors were saying, ‘Now he just needs to stay the course. Stay stable, no more dips.’”

As his situation grew increasingly grim, the transplant team got Nick’s UNOS urgency level elevated to Status 1 to increase his chances of getting a match in time.

“Honestly, he could have easily not lived long enough to get a good heart,” Dr. Boeve said. “Many recipients are pretty stable (in the lead up to transplant). He wasn’t one of them.”

Room 5805

Throughout his wait, Nick always had a family member by his side—his mom, brothers Josh and Tyler, or his dad, Paul.

Late in the game, his parents asked the nursing team if they could move Nick to a larger room, one that held special meaning for them: Room 5805, where Tyler stayed when he received his donor heart.

“It’s a very lucky room,” Paul said.

The team made that change happen.

A few days later, in the wee hours of the morning, Nick got the call they’d all been waiting for.

He’d had a rough night, punctuated by an unsettling ICD shock. Afraid of a second shock, he resisted falling back to sleep, but by 4 a.m. he had drifted off.

That’s when the unit nurse received a call from Milena Jani, MD, the advanced heart failure specialist on call.

“I called and told them, ‘You need to give the phone to Nicky,’” Dr. Jani said.

“They said, ‘Please, Dr. Jani, we don’t want to wake him up. … This boy has been so scared to fall asleep all night. He’s finally resting.’”

Though she didn’t want to break the news to the nurse first, she needed to get Nick on the phone—so she revealed the reason for her call.

Nick remembers the next moments as clearly as Dr. Jani does.

“I thought she was just calling to see how I was because I got a shock, but I answered the phone and she said, ‘Are you ready for this?’ and I was like, ‘Ready for what?’

“And she said, ‘You received your gift. It’s the perfect match.’”

Soon there wasn’t a dry eye in the room.

“I think we were all crying on the phone,” Dr. Jani said. “Everyone in the room was just emotional for the news.”

It’s moments like these that make her work so meaningful, she said.

“I live for that part of my job,” Dr. Jani said.

Collaborative efforts

Dr. Boeve, Nick’s lead transplant surgeon, knew he would need a special plan for this surgery because of Nick’s congenital heart anatomy. Doing a transplant on a patient who’d had a switch procedure requires a different approach.

“His vessels were arranged quite abnormally—even though it was the way a commonly accepted switch is done—so we had to have a plan to accommodate that,” he said.

Dr. Boeve called his predecessor, Asghar Khaghani, MD, who retired from Spectrum Health in 2017.

Dr. Khaghani, who for years worked with the surgeon who helped pioneer the switch operation in Europe, explained how he handles transplants like these. The trick, he said, is to insert the new heart at a slight rotation rather than in its normal position.

“He said, ‘When you get the heart out, you’ll see. It’ll be very easy,’” Dr. Boeve said.

Dr. Boeve also met with Dr. Haw to review the complexities of Nick’s case. The two surgeons—representing adult and pediatric cardiology—agreed to work together in the operating room to ensure the best outcome.

With a plan in place, Dr. Boeve and his surgical partner, Marzia Leacche, MD, had clarity and confidence when they accepted a donor heart for Nick on Oct. 25, 2019.

“To accommodate for Nick’s abnormal anatomy, we had our procuring surgeon take extra length on the great vessels, so we would have a little bit more to work with,” Dr. Boeve said.

“You wouldn’t think it would work, but it works fantastically well. We sewed that heart in and it just worked great.”

But Nick wasn’t out of the woods yet.

After the transplant he faced a series of hurdles: bleeding problems, an adverse reaction to an immunosuppressant drug and poor kidney function, which left him on dialysis for several weeks.

A month after his transplant, just in time for Thanksgiving, Nick achieved his No. 1 goal: to go home. In a post on his Team Nicky Facebook page, he expressed deep gratitude to his “donor family for their selfless gift of life” and the “absolute best cardiac surgeons, transplant doctors and medical team.”

Among those he singled out for special thanks was Dr. Jani: “for being my other mother.”

That sentiment fits the way she views her relationship with Nick and his family.

“He has a maturity about him that makes caring for him as if he’s part of your own family,” she said. “I look at Nicky and he is no longer just a transplant patient. He is—I am very motherly, so he is my family, too.”

Caring for both Nick and Tyler has given Dr. Jani a special connection with the brothers’ parents.

“That family has nothing but grace, respect, strength—in the worst of times,” she said.

“I mean, they’ve had to watch two of their sons go through the most difficult surgery of anyone’s life … and they’ve been a pleasure to work with. They receive good news with the same composure as they receive bad news. They never lose focus.”

Since his discharge in November, Nick has had a second hospitalization and completed another series of dialysis treatments.

Around the time the COVID-19 pandemic began, he turned a corner. Though the lockdown prevented him from starting cardiac rehab in the spring, he got it done in the summer and has made great strides in building strength and stamina.

He even got Dr. Jani’s permission to start playing lacrosse again—something she said she granted “because I know it means so much to him” and because she trusts him to be careful.

Today, Nick is back at Davenport University, having another go at his freshman year. And he’s feeling strong.

“Every time I used to walk up my stairs, I’d always be short of breath. Now I can pretty much run up the stairs and be fine,” he said.

“I haven’t felt this good since probably my eighth-grade year.”

Source : Health Beat More