The hopeful, difficult, gracious journey of Larry Anderson's new heart
Last May, Larry Anderson, of Wabasha, received his new heart. Though the path to recovery has been tough, he's determined to "put one foot in front of the other" each day.
WABASHA — On a rainy Friday afternoon, Larry Anderson is taking a long, brisk walk on a treadmill. He chats with clinical exercise physiologist Brad Ziemer, who's standing off to the side, watching Anderson exercise.
After about 20 minutes of walking, Anderson works through his exercises on the other equipment in the room: the elliptical, the free weights, the leg press, the arm bike — the hardest one, in his opinion.
When Anderson began his cardiac rehabilitation at Gundersen St. Elizabeth's Hospital in Wabasha last year, he could only leg press 30 pounds. Now, he's up to 130.
It's all part of the exciting yet grueling journey Anderson is on as a heart transplant recipient.
"You're signing up saying you're going to do whatever it takes," Anderson said. "Because everything that went into this, all these people that were involved — and there are many, I can't list them all — everyone's put their best foot forward. You have to do this, and you own it — (you're) the custodian of a new heart."
Anderson, 66, received his new heart on May 4, 2022, after several years of battling hypertrophic cardiomyopathy, a disease that causes the heart muscle to thicken, making it harder for the heart to pump blood.
In the year-plus since that day, Anderson's path hasn't been easy.
"There's stages, there's setbacks, and God willing, you just continue to put one foot in front of the other and do the best you can," Anderson said.
When Joanie Passe and Larry Anderson got married about a decade ago, Passe said she didn't know much about Anderson's heart condition. At that time, he had been diagnosed with atrial fibrillation — A-Fib — a heart arrhythmia.
"After we got married, when he came home from work, I would be mowing," Passe said, "and I could see him just getting out of the car, and he'd just be standing there, trying to catch his breath."
When Anderson was 57 years old, he tried to walk up the stairs at work.
"All of a sudden, when I reached the top of the stairs, I couldn't make it any further," Anderson said.
He said he took a deep breath. He waited for a few minutes. Then, he made his way back down the stairs, went out to his truck and drove to the Olmsted Medical Center Plainview Clinic.
"At the time, I didn't think anything of it," Anderson said. "When I was there, a couple of doctors came on in, they came in with an EKG and I thought they'd just say, 'Just rest a little bit,' give me some medication or something and tell me to, you know, rest. Well, next thing I know, they're sending me to the emergency (department) at Saint Marys."
Anderson's struggle on the stairs led to his hypertrophic cardiomyopathy diagnosis. After Anderson underwent more tests, he said his doctors advised him that getting on the heart transplant list would be his best option for survival. Anderson went to see Dr. Daniel Borgeson, a Mayo Clinic cardiologist, for more options.
"I sat down and talked to Dr. Borgeson at length of mapping out a health care plan," Anderson said. "We batted back some ideas, and then I said, 'Why don't we take the least invasive (option) first?'"
And that's what Anderson did to manage his condition for several years — treatment began with medication, and when that was no longer effective, Anderson said he had at least six conversions, where a quick electrical pulse is used to correct the heart's rhythm.
Then, Anderson's medical team moved on to ablations. He said he had two cardiac ablation surgeries where doctors created hundreds of scars in his heart to improve his heart function.
"That did not last very long," Anderson said. "And then we went on to some other medications."
When those medications didn't help, Anderson said he had exhausted all avenues except transplant.
"Over nine years, Mayo Clinic tried everything and then came to the decision that it's time to get on the heart transplant (list)," Anderson said.
In the four years leading up to Anderson's transplant, Passe said she and her husband were making trips to Rochester at least once a month. When the best treatment option for Anderson became transplant, he said he knew that could only happen once he was unwell enough to be hospitalized.
"And that point did come," he said.
It was April 27, 2022. Passe said she was doing some cleaning around the house when she noticed that Anderson couldn't get out of the chair he was sitting in.
"He just was so short of breath, just gasping," Passe said. "I called the Mayo Clinic and made an appointment, told them that he wasn't feeling the best, what the symptoms were and they said, 'You need to come over now.'"
As they left for Rochester, not knowing if this hospital stay would result in transplant, Passe recalled how Anderson stopped the car halfway down their driveway.
"He said, 'You know, I don't know if I'm going to be home,'" she said. "But I said, 'We are. We are going to be home, we're going to be just fine. You're going to be home.'"
At Mayo Clinic Hospital-Saint Marys, Anderson underwent surgery to place an intra-aortic balloon pump into his heart to keep it beating effectively. With the pump, Anderson said he'd never felt better.
"I was on it for a few days, and that was a tremendous adventure — and so is the new heart, I won't diminish that," Anderson said with a laugh. "But for the pump itself, you can only be on it for so long, so I'm very fortunate, grateful."
"That would keep him alive until he got a heart," Passe said of the pump.
At that point, Passe and Anderson didn't know when a heart would become available.
That changed on May 3, 2022.
That day, Passe said Anderson's doctors had been visiting with him for a while, checking him over and talking with him. After they left, Passe said Anderson "was so dang tired." He wanted to sleep, and Passe decided to go take a walk.
"I got as far as ... by the Apache Mall," she said. "I was just hoofing it down the road, and he called me and he's all choked up."
Anderson told Passe: "I've got a heart."
"I turned around, I said, 'I'll be there in a minute,'" Passe said. "But I was a mile away, so I started running."
Then, Passe said she saw a car approaching. She ran into the middle of the street, waving her arms.
"I'm sure the woman thought I was insane," she said. "I said, 'Help me, help me!' And when I got by her car, because she had slowed down, she locked both doors, thinking there's some crazy woman out there."
Passe told the driver that her husband was getting a heart transplant, and the driver let her in and drove her to Saint Marys.
"She was very kind, and she just said 'Breathe, just breathe,' because I was very emotional," Passe said. "I was calling my kids and telling them and ran up those stairs like a crazy person, let me tell you, and ran down the hall."
Later that day, Passe's adult children, Anderson's stepchildren, were able to join them in the hospital. Passe said Anderson's transplant was delayed a few times before he finally went under the knife the morning of May 4.
"The donor family was struggling with this," Passe said. "They had to give them more time."
As the surgeons worked to place the heart of Drew, a 36-year-old father of two, into Anderson's chest, Passe and her family waited anxiously, watching text updates roll in from the OR. One of the first texts: The heart has arrived.
Over several hours, Passe received updates: The patient has been opened. The heart is ready to be put in. The patient is doing OK. The heart is in and beating. The patient is being sewn up.
"It was so exciting, but it was so frightening," Passe said. "One time during the day, I broke down and sobbed because I thought, 'Oh my God, this poor family is going through hell, and we're excited.'
"We just held on to hope and believed that God was going to get him through this," she continued. "And he did."
Anderson spent the first two weeks post-transplant in the intensive care unit.
"As soon as possible, the doctors said, 'We got to get you going,'" Anderson said. "Anytime you lay in bed for two weeks, you lose ... over 50% of your strength or your muscles, and you can't even sit up, you can't get out of bed."
With the help of his medical team, Anderson began to regain his strength by sitting up in his hospital bed and gradually progressing to bigger, harder movements.
"How difficult is that? To the point it brings tears to your eyes," he said. "You're trying so hard to get up, but all the doctors said you have to do this. Recovery is crucial to this. So, you have to do it, whatever it takes."
By the end of May, Anderson was discharged from the hospital, and he and Passe lived at the Gift of Life Transplant House for several weeks.
"Boy, if that wasn't something," Passe said. "By then, you're kind of on your own."
It was a difficult, exhausting month for both Anderson and Passe. While Anderson was still regaining his strength after transplant, Passe said cleaning, cooking and caregiving throughout that month was an exhausting process.
"The Gift of Life is a godsend. It's just a godsend," Passe said. "I couldn't say enough about it. But it's still difficult."
For the last few weeks of Anderson's Gift of Life stay, his brother stepped in as his caretaker. In July, Anderson finally went back to his home in Wabasha. Soon after, his cardiac rehabilitation began at St. Elizabeth's.
"He's made great strides," said Ziemer. "When he first started with me, he had difficulty just doing a six-minute walk test that first day."
Over the course of a few weeks, Anderson completed his rehab exercises at St. Elizabeth's with a heart monitor around his chest so that Ziemer could keep a close eye on him. By the time October 2022 rolled around, Ziemer said Anderson was doing well enough to advance to the "maintenance" phase of rehab where he didn't need the heart monitor during this thrice-weekly visits.
But winter had a few bumps in store for Anderson and Passe. In November, Anderson fell ill with COVID-19.
"Then he got pneumonia," Passe said. "And then he got CMV, which is a bad, bad infection — you can die from that stuff. But it took us until January to get those three things all cleared up."
It was a big setback, and during that time, Anderson couldn't do his cardiac rehab. In early 2023, Anderson also had to deal with serious bleeding in his eye and had a rough transition from one anti-rejection drug to another.
"Our doctor says everything that could go wrong in this last year kind of went wrong," Passe said.
It was a lonely winter, too. Because Anderson was exhausted and immonosuppressed, Passe said they limited visitors.
"He just didn't feel well enough," she said.
Anderson's goal, he said, was to get to the one-year anniversary of his transplant. Gratitude has been his guiding point.
"What helps is ... when I get up in the morning, I'm grateful," Anderson said. "When I lay my head down, I'm grateful. Whatever happens in between is just frosting on the cake."
Anderson emphasized how important his cardiac rehab regimen at St. Elizabeth's is to his recovery.
"There's not an institution around that would disagree with that statement," he said. "They're all saying you have to, in order to get stronger, you have to do this. So, it is crucial."
Passe said she's seen how much better Anderson feels when he does his cardiac rehab.
"He comes back and he's got energy," she said. "Yesterday, he came back home and he said, 'Boy that feels good.' He said, 'I've got energy today.'"
It's been a taxing, trying road toward that first year post-transplant for Anderson and Passe. And they know there are still obstacles ahead — the medications that keep Anderson's body from rejecting his new heart predispose him to complications such as cancer.
Passe and Anderson were touched by the words of Amy Silverstein, a novelist and two-time heart transplant recipient who died on May 5, 2023. In April, she wrote in The New York Times about the terminal cancer that would kill her and her healthy, transplanted heart and how advancements in transplant medicine need to be pursued to better protect recipients from those secondary health effects.
"Transplantation is no different from lifelong illnesses that need newer, safer, more effective medicines," Silverstein wrote. "Improvements in drug regimens are needed for lupus, Parkinson’s and a host of others. The key difference is that only in transplantation are patients expected to see their disease state as a 'miracle.'"
Passe said she and Anderson saw Silverstein speaking about this on CBS News and "both sat there in awe."
"She said this is your duty because you're were so blessed to have a heart, do something for the next generation and try to get more research on these medicines," Passe said. "Because the heart's not destroying him now. The medicines are."
"The first year is the hardest, but it's the most critical," Anderson said. "But there's also things that can go awry within, you know, the third or fifth year, and some of it is the drugs."
But it's a trade-off Anderson said he'd choose again.
"After this point, right now, I'll take my worst day, which is those days I could not swallow, I could not walk, I could not do anything myself, and (if) someone asked me, 'Would you do it again?' I'd say, 'Of course,'" Anderson said. "Even my worst day, I'd do it."
As Anderson's recovery continues, Passe said she's hopeful they'll get to get out and do more things this summer that they couldn't last year. And that's looking promising — on the day that Passe and I talked on the phone, she said Anderson was out mowing the lawn as we spoke.
"That's where we are a year later."