Nickel: He ran 114 marathons with his heart and hopes to run one again as a heart transplant recipient

The eyes can compensate for floaters and make us think the vision is clear. The kidneys will cover for each other if one of them has cysts. The brain might try to grow new connections if there’s a impediment.

But you only get one heart. Incredible and powerful, this muscle the size of your fist makes everything work.

And Derek Lindstrom’s heart function had fallen to the 6-10% range. By the time he was admitted to the intensive care unit, the sandcastle was kicked over and the tide was coming in. The end looked near. The news was bleak.

So this is a story about miracles. And science. It’s a story about a generous and anonymous donor. And a brilliant cardiologist. It’s a story of a heart transplant recipient who ran 114 marathons with his old heart – and now dreams of running another, with someone else’s.

This is a story with a terrifying beginning, jaw-dropping middle and a beautiful present-day outcome.

“Most days, I work all morning. I go to lunch. My wife and I walk a 5K. I just feel like a normal guy,” Lindstrom said. “And then I go home and I take my shirt off. It's like, oh my gosh, you had a heart transplant. I honestly don't get very emotional about it until I take my shirt off. When you think about when they cut you open, rip that sternum open, take a heart out, and put one in; they staple you back, they sew you up. When you think about that, oh my gosh, that's a lot.”

Derek Lindstrom of Grafton has competed in more than 100 marathons, including the Leadville Trail Marathon in Leadville, Colorado.
Derek Lindstrom of Grafton has competed in more than 100 marathons, including the Leadville Trail Marathon in Leadville, Colorado.

Lindstrom has had an elite running career

The 60-year-old Lindstrom, of Grafton, raced the biggest marathons in the country. Chicago, New York, Boston, Las Vegas, Phoenix. Salt Lake City, New Orleans, Miami. Grandma's and Twins Cities marathons. He got his personal record of 2 hours 29 minutes in the late 1980s in Chicago. That’s ridiculously fast. For perspective, in 1989 a podium finish for the best runners in the world in that Chicago race was 2:11 and 2:15.

When the warning signs started, Lindstrom kind of ignored them. And if you are an athlete, or know one well, you know why. That inner dialog is usually at war with the body, overriding its aches and pains, cravings and cavings, and most of all, the injuries. The mindset needed to keep going when the body signals it is time to stop, to keep training when sleep is lacking, to keep fighting when the opponent is winning – that mindset is everything to an athlete.

So when Lindstrom finished the 2016 Boston Marathon and spent hours vomiting afterward, he told himself half-truths.

“Oh, ‘I'm just getting slower,’” Lindstrom said. “’I'm old.’ ‘I'm fat.’ Maybe it was just hot out. I was just running hard; it was a tough race. You know, whatever.”

Derek Lindstrom was admitted to Froedtert Hospital on Oct. 12, 2023, and received a heart transplant two months later.
Derek Lindstrom was admitted to Froedtert Hospital on Oct. 12, 2023, and received a heart transplant two months later.

A diagnosis of chronic heart failure

But then in 2018, there was a sign he could not ignore.

“March 3, I remember that day like it was yesterday,” Lindstrom said. “I had done a 20-mile run that morning. I was shopping with my daughter, and I was having slurred speech, so I went in. And there were all sorts of tests. And they just kept finding stuff.”

His left ventricle was “huge.” There was also “super old scarring” on his heart.

Lindstrom, then 54 years old, was diagnosed with chronic heart failure, which is the reduced function of the left side of the heart. But his story is complicated. Tests couldn’t find evidence of a heart attack. Instead, doctors found a history of inflammation from unknown causes and it had damaged the healthy heart tissue.

But because Lindstrom was such a physically fit person, it was a long time before he presented – and acknowledged – symptoms of heart failure, like the vomiting and slurred speech.

At the time his heart function was around 23%. A normal range for the heart to pump out blood is 50-65%.

Even though Lindstrom was still very physically active, doctors gave him all bad news. Running was over. Lindstrom would need drastic medicines and treatments to stay alive. And, eventually, he would need a heart transplant. But for that…

“They said, ‘You're not quite sick enough yet,’” Lindstrom said.

Remember, he ran 20 miles that day. He was still walking and hiking and biking regularly.

“And that's just not what a heart failure patient does,” he said.

Derek Lindstrom spent two months in an intensive care unit at Froedtert Hospital awaiting a match for a new heart.
Derek Lindstrom spent two months in an intensive care unit at Froedtert Hospital awaiting a match for a new heart.

Living with a dying heart

The following years were difficult. Lindstrom's body did everything it could to compensate and help the failing heart. Renee Kursel, a cardiologist who specializes in advanced heart failure and transplant cardiology at Froedtert Hospital and the Medical College of Wisconsin, explains.

“What happens is over time when patients do have heart failure – when the pumping function, the strength, isn't as strong – the heart actually stretches out and gets bigger,” she said. “And that's one way it can compensate.

"When people are younger and every other organ tissue is healthy, that also kind of compensates. Better vascular flow can maintain your blood pressure better. The more physically fit you are, having healthy muscle tissues, and not having diabetes, high blood pressure, the things that put too much stress on your body – it meant he could keep up even when that function percentage was so low."

But back in 2018, Lindstrom fell into depression over losing running. He was a running coach, a running competitor and a running event organizer. It was his life and his lifestyle, his social network and friend group. Also, runners think they can run forever – that they possess the secret map to the fountain of youth.

“It was really hard at first,” Lindstrom said. “Those first few months were, I gotta be honest, they were tough. My identity was as a runner. And then I have somebody tell me, ‘No, you're in chronic heart failure.’”

Lindstrom’s doctors couldn’t pinpoint the root cause, either. Lyme disease? A virus? No answer. And then just when it was bad, everything got worse.

Derek Lindstrom poses with the surgical team before his heart transplant surgery on Dec. 3, 2023.
Derek Lindstrom poses with the surgical team before his heart transplant surgery on Dec. 3, 2023.

Getting treatment...and waiting

Lindstrom needed regular heart catheterizations, a highly invasive procedure that is painful and exhausting, to test the pressure and strength of his heart.

“I was getting those a lot, and they’re just awful,” he said.

In the middle of his treatment, Lindstrom had to switch insurance companies, which meant he had to leave Froedtert for another medical care organization. He was getting different opinions, then, too. Froedtert wanted him on the heart transplant list; the other place deferred him.

“It was those kind of emotional roller coasters,” Lindstrom said.

As luck would have it, he switched insurances again a year later, which got him back to Froedtert in 2021. And back to his favorite caregiver.

Lindstrom's mother-in-law, Janice Collins, picked a cardiologist based on her bio on the Froedtert website: And it was Dr. Renee Kursel. She’s a clear speaker, exceptional explainer and passionate caregiver. Kursel played volleyball, basketball and ran track at Brookfield East High School (Class of 2003) and that made her even more understanding of Lindstrom's case.

“And she was amazing,” Lindstrom said. “The care that we had at Froedtert – I don't know why anybody would go anywhere else. She's a hugger, as we are, and doesn't sugarcoat anything. ‘Derek, you're not doing this. Derek, yeah, you can do this.’

“She's got this attitude like, she was a college athlete or something. She was … strong. I think athletes are kind of a little different. She was just confident and just told us what it was, and we 100% trusted her.”

Through it all, Lindstrom kept hiking and biking. His wife, Kirstin Lindstrom-Collins, also detailed Derek's story with fascinating, uplifting, heart-wrenching social media posts.

Derek Lindstrom (left) ran the 5K race at the Brew City Marathon in April 2024, four months after receiving a heart transplant.
Derek Lindstrom (left) ran the 5K race at the Brew City Marathon in April 2024, four months after receiving a heart transplant.

'We're keeping you'

In March 2023, he was put on the heart transplant list. He was still going on two-hour walks.

In October 2023, he checked in for another right heart catheterization.

“The surgeon said, ‘We’re keeping you,’” he said. “We had stuff planned for that week and that weekend, and we said, ‘OK.’”

With the extremely low heart function, he was placed on the LVAD Impella pump that he dreaded and tried to avoid until absolutely necessary; the Left Ventricular Assistance device is a small pump inserted in the body that helps the heart pump blood. The ICU was his home for two months. As sick as he was, he still got in 10,000 steps a day.

“And on Dec. 3, they found me a heart,” said Lindstrom, who unconventionally walked himself into the operating room.

Derek Lindstrom's wife, Kirstin, has chronicled her husband's medical journey on social media.
Derek Lindstrom's wife, Kirstin, has chronicled her husband's medical journey on social media.

Thanks to the donor

This is a good place to pause for reflection and to pay our respects.

While Lindstrom was dying in the ICU, his last hope was for someone else to pass away and leave behind a good, healthy heart.

Frequently in these cases, it's an unexpected death and Kursel is one of the first to get the call, because she has to determine if the heart is in condition to be donated, and, if the donor's heart is a good match for her patients.

“My heart breaks. Often,” Kursel said. “Donors are definitely under 50 years old a majority of the time and more frequently are under 30 or 40 years old. When we get a young person's heart it absolutely breaks my heart to hear, because we do have to hear about how they passed away, for our evaluations. It makes me really grateful every day for not only what my life is, but it really does put things in perspective.”

Once Kursel determines the donor’s organ is a good match – Lindstrom is 6-foot-2, 200 pounds, so the donor had to be within a good range – Kursel often has conversations with her transplant patients, who experience a range of emotions from elation and relief to sadness and guilt.

“I often tell them while a tragedy has already happened, the organs go on and live through the recipients,” Kursel said. “It is not as if the donor died for them. In the most tragic time, a part of someone can actually save someone else's life.

“I tell them, If you could take care of that organ going forward, knowing that tragedy happened, it's almost like it's not in vain in some small ways.”

With such a great gift comes so much responsibility and so much conscientiousness.

Transplanted hearts on average last 12 to 15 years, or less if they are not cared for well. Kursel said they can even last 20 to 25 years. Care and management is so important, from taking medication, to living a healthy lifestyle – even staying out of the sun since skin cancer is a big risk for transplant recipients who are on immune-suppressing medications – to the mental aspect of a living a renewed life with a donated heart, and all the choices one makes with that heart.

A new heart, a new life – and new expectations

Lindstrom is 60 now. The man can’t just stop moving, either. Don’t suggest another hobby, he’ll laugh at you.

He owns and operates a sports event management company, 22 events (LIVE), that hosts 11 events in Wisconsin and Michigan, where Lindstrom spends most of his summer. On May 25 he coordinated the Cedarburg half marathon and 5K, which was also a fundraiser for Camp Odayin in Elkhorn for kids with heart disease.

Baby steps? Sort of. He struggled to climb his favorite Hogback Mountain in Michigan at first, but now he’s up and down it. Everything is a challenge and he must crush it. Stair climbs. Trail runs.

And he has lofty goals.

He talks like he’s going to do the 50K trail run – Marji Gesick 100 in Marquette, Michigan, in the fall, a race so demanding that one year the rate of those who did not finish was 70% during a heatwave. Lindstrom plans to run a marathon in November in Indianapolis, surrounded by family there.

After that, who knows? The Boston Marathon has had heart transplant recipients before, but did those runners get admission on a charity bib? Or has anyone qualified for Boston with the new heart? Lindstrom isn’t sure. The qualifying time last April was 3 hours 50 minutes for the 60-64 age group. In his mind, that’s easy; in the real world, that’s so challenging.

That kind of fighter spirit, that kind of determination, must be one of the reason why Lindstrom has made it this far.

But there’s also a harsh reality.

“The running has still been a bit of a struggle; I probably couldn't do three miles right now,” Lindstrom admits. “But I can hike for three hours and I can bike for three hours, but just the running piece - yeah, it's been really hard.”

Doctor: Can he still run on a new heart?

Behind the scenes, mowing the lawn can be taxing for Lindstrom. He might get headaches from exercise. He just keeps pushing through it.

Kursel is very, very careful when she’s asked if Lindstrom could, or even should, be making plans to run such big cardiovascular events with the new heart. She said:

One, it can take up to a year for someone who had open-heart surgery to fully recover, not to mention someone who had transplant surgery.

Two, Lindstrom’s kidneys are not in great shape right now because of the poor health, the transplant, all the treatments and medications, the stress.

“I remind him that he was in the hospital sitting and waiting for a prolonged period of time,” Kursel said.

Three, Lindstrom is also wired differently now, literally.

"When a heart goes into the body, we connect all the blood vessels, but the nerves are not reconnected to the heart,” Kursel said. “It's called a denervated heart so it doesn't have what we call the sympathetic and parasympathetic systems that naturally go from our brain directly to the heart. That's our flight or fight response.

“So when you start working out, your brain tells your heart, 'let's increase the heart rate. Let's increase X, Y and Z pumping' and all those things. But there's no communication there from a nervous standpoint after a transplant.”

Exercise is very different for heart transplant recipients. Transplant patients don’t tolerate interval and high intensity exercise as well. Most heart transplant patients are advised to take off for six months from work, even a desk job, to recover. With exercise, the advice is also to take everything slow.

A slow return to fitness, and perhaps even modified goals, is the best way to take care of that new heart, she said.

“I emphasize to him you don't want to stress the situation without any benefit,” Kursel said. “There's no studies out there with a patient within the first year trying to do a 50K hike. The most important thing is not to stress your body out in this first year post transplant. Your whole body is still recovering.”

That means there’s a bit of a clash here between the patient and cardiologist, and really, it’s a clash of the best kind. Lindstrom wants to do great things. Kursel wants to preserve him, the heart and all the work that went in to this miracle. It’s just not for anyone other than those two to discuss, judge and determine what’s best.

“He is a go-getter,” Kursel said. “I don't think he would ever be reckless with it. It's just that he has big goals, which I love for him; I think it motivates him.”

The toll it took

Maybe you’re reading this story in the newspaper over a morning cup of coffee, or maybe you’re scrolling online. That’s great, but that really sanitizes the ordeal, the pain, the fear, the waiting, the up and down emotions, the exhaustion, the mystery of medicine.

Lindstrom is both grateful and also hiding a little bit of how painful and scary this all was. Athletes and competitors don’t like feeling or expressing vulnerability. But after 45 minutes of talking, he does open up a little, especially when he thinks of the younger heart patients he's since begun to support through charity efforts.

"I was doing all those right heart caths, all the time, and they're just awful. And I could think about is, I can't imagine a kid doing this,” Lindstrom said. “All the stuff that I went through – and I think I'm a pretty tough guy – I can't imagine like an 11-year-old girl or a 14-year-old boy going through it. I get a little teary-eyed just thinking about that.

“There was some ugly pieces. You know, when you wake up after surgery, those first couple of days, it's ugly. Those first couple of days after a transplant - it's an ugly deal. Even the first couple of weeks at home afterwards. Tough. Tough. Tough going.

“Having a team – my wife, my mom, my mother-in-law – they were there all the time. I'm not sure how somebody would do it without a team.

"There were a couple of times where I died and had to get zapped back to life. That was really hard, physically and emotionally.”

A living testimony

Lindstrom works with Froedtert now, speaking about his experience to ICU nurses-in-training, or giving interviews, his testimony, to the media. He wants to inspire you (are you a donor) and he wants to encourage you (can you move a little more today?).

There’s two other things he wants for himself, as well.

A beer. He refrained, for all those years because he didn’t want to be turned away for any reason.

“Since the transplant I want my first beer. I want it to be epic and I just haven't found anything epic enough to have it," he said with a laugh.

And, he wants to see the donor family on the sideline of one of his races.

This is a dream right now. The family of the person who donated a heart to Lindstrom has chosen to remain anonymous.

But Lindstrom can’t help but envision that run. The fans along the street curbs, the wind cooling his face. And something every runner seeks: the rhythm between the heart and legs, falling in sync perfectly, powerfully.

"I've always loved the idea to see the donor family at a race,” Lindstrom said. “Showing them what their son or their dad or their brother’s heart is doing now.

“Obviously those days of me winning anything are done. I'm back to just be a normal guy, but to finish a marathon with a new heart is just… you know, I can't wait.”

This article originally appeared on Milwaukee Journal Sentinel: Transplant recipient wants to run a marathon with new heart