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Elise Campbell was 14 when doctors in her home state of Iowa told her there was something wrong with her heart. But they weren't sure what it was.
"One of them finally said, 'We don't really know what you have, but we do know you have a pretty rare heart condition," Elise says. It would be another 13 years, however, before Elise would get a diagnosis. "Finally, they said, 'We're going to send you to Mayo Clinic because they're going to really be able to evaluate you and find out exactly what it is that you have,'" she recalls.
When Elise and her family drove north to Mayo Clinic's Rochester campus, a team of medical professionals was ready to do just that. "They did a complete workup on me," Elise says. "Through that, they determined I had left ventricular noncompaction cardiomyopathy, which — as my doctors in Iowa had said — is a pretty rare genetic heart condition."
The news wasn't easy for the 27-year-old to process. But with her family at her side and the support of her Mayo Clinic care team, Elise received the education and treatment plan she needed to return home and continue living her life. Several years later, though, the situation changed. After dealing with a stroke and battling ongoing fatigue, Elise learned her heart was giving out. She needed a transplant.
Although the process took some time, Elise eventually received that heart transplant. Since then, her world has opened to a host of new activities and adventures, including yoga, biking and hiking.
"Because I could never do it before, it's more exciting to do all of this stuff now," Elise says. "I never thought I was going to be able to do anything like this in my life."
Elise's path to a heart transplant began in 2010 when she was home alone one day, and she noticed an odd feeling. "I looked down, and my left hand was dragging across the table," she says. "I thought, 'That's kind of weird.' Thankfully, it only lasted about two minutes before I came out of it."
The episode turned out to be a stroke. Elise and her family went back to Mayo Clinic. "They put me on blood thinners and implanted a defibrillator as a precaution," Elise says. "After that, it was just more monitoring."
When Elise's husband was transferred to Phoenix for work in 2011, she worried about the future of that monitoring. Those worries eased when the couple learned about Mayo Clinic's Arizona campus.
"The Arizona campus was actually a closer drive for me than it was from Iowa to Rochester, which was quite a blessing because, although I didn't know it at the time, I was in the early stages of heart failure," Elise says.
Her body did know it, however, and had been sending her warning signs. "I was feeling more and more tired and just didn't have a lot of energy," Elise says. "But I always thought I'd feel better in a few days or the following week."
When that didn't happen, her care team in Cardiovascular Medicine intervened. "Dr. Robert Scott brought me in and said, 'We need to figure out what's going on,'" Elise says. "So he did more testing and determined I needed a heart transplant, which actually made a lot of sense."
For Elise, who'd been living with the side effects and complications of a failing heart for so long, the news was a welcome explanation for what was going on inside of her.
"It was actually a relief because I was 32 at the time and just wondering why I was always so tired," she says. "When my care team told me I needed a heart transplant, I was like: 'Oh, thank goodness. At least we now know what's causing all of this.'"
With a cause identified, it was time to start working toward a solution. "I had a wonderful team of doctors and nurses who guided me through the transplant evaluation process," Elise says.
Initially, Elise was able to remain at home as she waited for a transplant. That changed when her heart function fell to less than 10 percent. "At that point, my care team told me I needed to stay in the hospital while I waited for my heart," she says.
For the next three months, that's what she did. "Thankfully, I had a great group of nurses who were about the same age as me, and so that really made my stay easier," Elise says.
Her parents, recently retired, also had moved to Arizona and often spent time with Elise at the hospital. Elise's husband came to see her each evening after work.
"I never wanted to complain because I was actually very lucky. I was at one of the best heart transplant hospitals in the world — if not the best — and I had all of these doctors and nurses who I enjoyed hanging out with and having fun with. And I had my husband and my parents there with me, too."
Even amid all the support, though, there were times when doubt and despair would creep in — as they did one summer evening in July 2014. "My husband was there with me, and we were having a game night," she says. "It was a Friday night, and when he got up to leave, I just started thinking that this wasn't fair. We should be out having fun on a Friday night rather than sitting in a hospital room together. I was just feeling down on myself at the time."
Her mood quickly changed when Elise heard the medical transport helicopter at the hospital's helipad outside her window. "Right at that moment, I heard the helicopter landing," she says. "I thought, 'Here I am complaining, and here's someone who's coming in who's obviously much sicker than I am.' So I got over my self-pity and said a little prayer for them and for me. I said, 'Whenever God is ready to send me my new heart, he'll send it.' I actually said that out loud."
Thirty seconds later, cardiologist D. Eric Steidley, M.D., knocked on Elise's door. "He came in and said, 'We have a heart for you,'" Elise says. "The whole timing of it all was just so crazy."
Elise immediately called her husband. "I told him to turn around and come back to the hospital because we had some good news," she says. "I called my parents, and they came over, too. It was a very emotional time for all of us."
Elise's care team wasted no time. The transplant was scheduled for the following day. Mayo Clinic surgeon Octavio Pajaro, M.D., Ph.D., performed Elise's heart transplant, and everything went well. Elise says waking up after surgery and feeling her new heart beating inside of her was an experience she won't forget.
"The first thing I noticed after waking up was this big, thundering 'boom, boom, boom' in my chest," Elise says. "I was used to a heart that was very weak and to now have one that was actually efficiently pumping blood was crazy because I could feel it and hear it. My hands and feet were also warm, and that was something else I wasn't used to."
Another new sensation Elise was happy to get used to involved her leg muscles giving out before her heart did during the many rounds of physical therapy and rehabilitation her care team directed her to do after her transplant.
"Once I got out of the intensive care unit, they wanted me to start walking laps, and for the first time in many, many years, it was my leg muscles that got tired before my heart did," she says. "My new heart was ready to go. My leg muscles weren't, but my new heart was."
Once she left Mayo Clinic, Elise says wrapping her mind around her new reality took time. "The physical benefits of my new heart came easily to me," she says. "It was the mental part that took some work — telling myself it was now OK for me to exercise, to run, to do yoga. My husband had to reassure me that it was OK for me to sweat during exercise because that's what normal people do. But I'd always associated sweating with getting dizzy, and that I was about to faint or something."
With the help of her husband and newfound friends in Mayo Clinic's heart transplant support group, Elise began to realize she didn't have to worry anymore.
"One of the most memorable things someone told me was that as good as you feel one year post-transplant, you'll feel twice as good two years out," Elise says. "Then every year after that, you just start to feel more and more normal as you begin to transition out of that patient mentality and into being a regular person again."
Once Elise began to make that transition, she realized that many of the things in life she never thought she'd be able to do were now available for her to try.
"My husband and I really enjoy the outdoors, and we've now made that our priority," she says. "We've hiked Angel's Landing in Zion National Park — where you're holding on to chains as you're climbing up the switchbacks of the mountain — and we've also hiked in Canada, in Montana, and we're going to Yellowstone National Park this summer, as well. Seeing all of these new places in the world that I thought I'd only ever be able to see in pictures has been amazing."
Elise says it's all thanks to her care team at Mayo Clinic, to her family and to her donor — whose mother Elise had a chance to meet and personally thank.
"To say that was emotional would be an understatement," Elise says. "It was a very special moment. The best thing about it was her mom said if her daughter and I had known each other, we likely would have been very good friends because we liked to do a lot of the same things. She said she loves to see me out hiking and biking, and doing other things outdoors now because her daughter loved doing those same things, too. And it's because of her daughter, and the decision she made to become an organ donor, that I'm now able to."
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