IU Health Methodist Hospital

Methodist’s ‘model’ patient talks about life after his heart transplant

Patient Stories

March 20, 2019

It wasn’t an episode of “Cake Wars,” but Jeremy Carr celebrated his 39th birthday March 9 with a surprise party and a cake fight.

“I was covered in blue cake; it’s not a good look for me,” said the Avon father of two and longtime patient of IU Health Methodist Hospital. But it was all in good fun.

What better way to mark a date that he might not have reached if not for a heart transplant. The one-year anniversary for that life-changing surgery is coming up March 30, and Carr will celebrate that day in a different way.

He’ll be writing a letter to be given to his donor family. The idea both excites and terrifies him.

“I’ve been thinking about it for two months,” he said. “I just don’t know what to say. What do you say to someone that lost a loved one? There’s things I want to say, but I don’t want to bring up bad memories for them.”

He knows they haven’t forgotten their loss, yet he doesn’t want to be a painful reminder.

Carr’s life in the year since the transplant at Methodist has been one of renewal. He has strengthened personal relationships. He tries to stay active, eat right, take care of the gift he has received. It took him three months before he could refer to his donor heart as his heart, but now he and his life-giving organ are more in synch.

He got to swim for the first time in seven years. He was in the pool so long, he said, “I looked like a 90-year-old man when I got out.” He built a flower bed at his home for his girlfriend of 20 years, Jennifer. He rode his Harley one last time before agreeing to sell it at the request of his 14-year-old daughter.

“Four wheels are better than two,” he said with a sigh.

But the thing he most looked forward to during the 200-plus days he spent at Methodist was buying a 1978 Chevelle to restore in his barn. It’s his favorite classic car, and this man named Carr knows his cars.

“I’ve always been a hot rod fan,” he said. “I grew up around them.”

He also grew up with a hole in his heart that never closed. As a young adult, he did some “stupid stuff,” he said, and he thought maybe it was normal that he had heart palpitations. It was on his birthday in 2012 when he found out he was in congestive heart failure. He had eaten out at a buffet, and by the time he got home, he was having trouble breathing. A trip to the emergency room revealed the problem.

“They told me my heart was working at 7 percent,” he said.

He spent two weeks in one hospital before being moved to Methodist for several more weeks. He went home with a dobutamine pump in his arm to deliver medications that kept his heart working. Two years later, he got an LVAD, a left ventricular assist device, used in patients with advanced heart failure whose heart can’t pump enough blood to the rest of the body. Then came the long wait for a heart.

Carr was at Methodist last week for a heart catheterization to check his progress since his surgery a year ago. He wears a pendant around his neck given to him by his mother. It reads: My dear son, May God always protect you and give you strength.

He brought along a shoebox containing two of his favorite model cars. One is a Trans Am, the other a Chevelle hybrid. Both contain bits and pieces of his hospital environment – tubing from a thermometer, pieces from an insulin injection pin, bits of plastic from a bedpan.

That’s how Carr kept his sanity while spending months in the hospital waiting for a heart. He admits driving his nurses a bit crazy with his antics, which included adapting a back scratcher to extend up and switch off monitors when they beeped. He was moved three times during his stay at Methodist, the last time to the biggest room on the second floor in the cardiac critical care unit – all to accommodate his growing hobby of building model cars, helicopters and ambulances.

When people heard about Carr and his love for cars, they indulged him by shipping more his way. By the time he returned to his home after surgery, he had an entire room full of donated model cars. One by one, he takes them and customizes them to his taste.

He can’t begin to count the number of model cars he’s built over the years. Thousands probably, he said.

“I’ve done this since I was 8 years old. I try to build cars I’ve owned or would like to own.”

He even built a model IU Health LifeLine helicopter that’s on display in the cardiac unit at Methodist. The racing fan got to take his own flight on the real LifeLine last May for Indianapolis 500 Carb Day festivities, just weeks after he came home from the hospital, and he loved every minute of it.

But it’s the full-size car he has in his barn that he’s most excited about working on now. As a surprise, friends and family took the stock hood that he had taken off the Chevelle and turned it into a 55-pound birthday card, decorated with photos of his days in the hospital, his dogs, his Harley and more.

As grateful as he was for a new heart, Carr admits to feeling on edge for the first few months after transplant. He didn’t have the security of the LVAD or the defibrillator that could save his life. It felt strange having someone else’s organ beating inside his chest. He worried about over-exerting himself.

A few times since the transplant, he did pass out, likely due to low blood pressure. Once, he thinks, was because he got up too quickly when his dogs woke him up to go outside.

“I got up and halfway to the door, I hit the floor,” he said. “I woke up to the dogs licking my face.”

All in all though, it’s been pretty smooth sailing, he said. Doctors have worked to adjust his medications, though he still takes 30 pills in the morning and about 20 at night. He folds them into applesauce and swallows them in one fell swoop.

“Down the hatch,” he says. “It makes people cringe, but I find it easier to do that.”

Next up for Carr is a job – something he’s been without since the transplant. He starts a new job as a service manager for a company in Plainfield on Friday, and despite his nerves, it feels good, he said.

“That’s what I wanted when I was in the hospital – to go out and be normal like everybody else, to have a job, have a purpose.”

That purpose is all the more important because of the second chance he’s been given. Now, Carr spends his free time back at the hospital – not for him but for his mother. He takes her to all of her appointments. He visits with physicians and nurses in the cardiac unit when he gets the chance. Recently, he found himself watching soccer, a game he never cared about. He wonders if his donor liked the sport. He wonders about his donor a lot.

“I have dreams about him or her. I really want to meet the family.”

Back to that letter he plans to write – “I’ve started it a hundred times, but after the first sentence, I can’t do it.”

Still, he imagines meeting them someday, having dinner, spending holidays together. Sure, he’s getting ahead of himself, but every beat of his heart reminds him that first it belonged to someone else.

– By Maureen Gilmer, IU Health senior journalist

Email: mgilmer1@iuhealth.org

Photos by Mike Dickbernd, IU Health visual journalist

Email: mdickbernd@iuhealth.org

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