When surgery to ease the swelling and irritation that had developed around Amber Taff's heart failed to improve her cardiac function, the 34-year-old decided to take her health into her own hands by going to Mayo Clinic.

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Amber Taff couldn't say what it was about the old house that caught her eye. But every time she drove by it in her hometown of Buffalo, Texas, she stopped and looked, even though the house wasn't much to look at. Time, weather and neglect had taken their toll, yet there was something about the dilapidated home that Amber couldn't ignore. When a for sale sign went up in the yard, she convinced her husband, Tyson, to check it out.

He couldn't understand why they were there. The house was in bad shape and certainly not the kind of place where they'd consider moving their young family. All Amber could tell her husband was that she felt something drawing her there. Once she stepped back outside, she finally saw it.

At the intersection where the old house sat was a street sign unlike the others. White, rather than green, and covered by layers of dirt, Amber was unable to clearly see what the sign said until she walked over and brushed it off. Once she did, everything leading up to that moment made sense. The sign read "Appleton Street."

Spiritual by nature, it was all the convincing Amber needed to know she had made the right decision to travel to Mayo Clinic in Arizona to see Christopher Appleton, M.D., a cardiologist, for a second opinion on her medical problems.

"I actually found him online. I Googled 'pericardial specialists nationwide,' and he was the first to come up," Amber says. "I'm a very visual person, and as soon as I saw Dr. Appleton's picture and started reading about his medical experience, I knew he was the doctor for me. My exact health issue is what he specializes in."

Troubling symptoms

Amber's health issue began in 2017 when she was diagnosed with postviral pericarditis — a painful inflammation of the thin saclike membrane surrounding her heart. After many months, she was told the inflammation had led to scarring of that sac, a condition known as constrictive pericarditis. It causes symptoms by preventing the heart from fully filling before it contracts. "It led me to have heart surgery to remove most of the sac — a pericardectomy," she says. "I did OK for a while after that surgery, but I then started developing symptoms of congestive heart failure."

For a young, active working mother, not only were the symptoms of breathlessness and fatigue troubling, so was the fact that it seemed little could be done about them. "My cardiologist just kept adjusting my medications because we couldn't figure out why my heart was doing what it was doing," she says. "Other cardiologists I saw would just tell me: 'You're 34 years old. You're fine. You're healthy.' But I knew I wasn't. I kept feeling worse and worse."

Amber decided to take her health into her own hands by researching other specialists across the country. "That's when I found Dr. Appleton," she says. "I immediately called to schedule an appointment with him."

"I felt so reassured. Somebody was finally going to take me seriously and do something to help me."

Amber Taff

When the date of that appointment came, Amber says Dr. Appleton wasted no time living up to what she'd read about him. "He'd already reviewed my medical history. So as soon as I met him, he said, 'We're going to get to the bottom of this,'" Amber recalls. "I felt so reassured. Somebody was finally going to take me seriously and do something to help me."

Dr. Appleton ordered a series of tests that revealed there was, indeed, something markedly wrong with Amber's heart. "He found that I had developed cardiac adhesions, or scarring of my heart, from my initial surgery that were restricting how much my heart could fill and pump," Amber says.

"It was unusual that the surgery Amber had to free up her heart by removing the heart sac actually made her worse when she developed even worse scarring between the bottom part of her heart and her breathing muscle and breast bone," Dr. Appleton says.

Due to that scarring, the right portion of Amber's heart became a passive conduit through which blood flowed, instead of working as it should as a pump that propels blood returning from the body through the lungs, where it gets oxygen, and on to the left heart that pumps the blood back out to the body.

The left and right heart pumps are supposed to work in tandem. "But when Amber tried to exercise, her poorly functioning right heart, inhibited by the dense scar, could not increase its output as it normally would," Dr. Appleton says. "This left the pump to her body under-filled and unable to increase the blood flow needed by exercising muscles, hence the breathlessness with even mild exertion."

Teamwork at play

Although Amber's condition was uncommon, Dr. Appleton was familiar with it. "Since my background is cardiac physiology and cardiac ultrasound, Amber's symptoms and ultrasound findings made right heart dysfunction the most plausible cause of her symptoms after seeing her initial testing," Dr. Appleton says. "Special exercise testing also confirmed her physical limitation was very severe."

Dr. Appleton understood that the best course of treatment for Amber would be to have another surgery, even though he knew getting her back in the operating room would be a challenge. "To get that lung pump to work again would require removing the encasing scar tissue," Dr. Appleton says. "But because her first surgery was supposed to do that, and the fact that some scarring is common after heart surgery, I felt it might be hard to get somebody to agree to do it."

Then Dr. Appleton found himself on a golf course with Hartzell Schaff, M.D., a cardiovascular surgeon at Mayo Clinic in Rochester. "I send almost all of my patients who need complicated heart muscle reduction surgery to him. Over the years, we've had a great professional relationship that has benefitted many patients, but we'd never actually met in person before," Dr. Appleton says. "The first year I was taking care of Amber, however, I saw him at a meeting we were both attending, and we ended up playing golf together."

As they made their way around the course, Dr. Appleton brought up Amber and the complexity of her case. "I told Dr. Schaff that she was young and previously vigorous, but now very disabled, with an ultrasound that made me believe her limitations were due to an unusual pattern of postsurgical scarring inhibiting her right heart pumping function," Dr. Appleton says. "I asked Dr. Schaff if he'd be willing to see her and at least consider the idea of repeat surgery to free up the scarring."

Dr. Schaff agreed, but he wanted another physician to weigh in before moving ahead with surgery. So Amber traveled to Rochester, Minnesota, and met with Mayo Clinic cardiologist Rick Nishimura, M.D.

"He was great," Amber says. "He and one of his fellows looked at my imaging, and then had me do an echocardiogram, EKG, blood work and an X-ray. After getting the results, Dr. Nishimura left our visit to call Dr. Schaff. When he came back, he said, 'OK, you're good to go for surgery tomorrow."

Dramatic turnaround

It was the way forward Amber had been looking for. "Before coming to Mayo Clinic, I'd become so physically debilitated that I couldn't walk a city block, couldn't walk up a flight of stairs, couldn't do much of anything because I'd get so out of breath, and my heart would be racing," she says. "I just wanted all of that to be over."

Soon after Dr. Schaff performed the surgery, it was. "As soon as I woke up in the intensive care unit, my color was back, and I was feeling great," Amber says. "It was crazy how instant the turnaround in my health was after Dr. Schaff's operation. In fact, my kids now call my surgery date my 'heart-iversary' because the surgery has been so life-changing for me."

"My whole patient care experience at Mayo Clinic has been life-changing."

Amber Taff

After surgery, Amber went through cardiac rehabilitation, where the changes in her physical abilities were quickly apparent. "During my first week of cardiac rehab, I was able to do 10 minutes on an elliptical machine. I told my care team, 'Eleven weeks ago, I was being wheeled around Mayo Clinic in a wheelchair,'" Amber says. "Now here I was exercising again. My whole patient care experience at Mayo Clinic has been life-changing."

When Amber returned to Mayo Clinic in Arizona for her first follow-up visit, Dr. Appleton agreed with that assessment. "Her results were remarkably better after surgery," he says. "Dr. Schaff really did a nice job of freeing up her right heart pump, as I knew he would."

It was just the outcome Dr. Appleton had been hoping for when he sent Amber to see Drs. Nishimura and Schaff. "Amber's was an unusual problem that we all learned from," he says. "Her outcome would not have been possible without the team approach of Dr. Nishimura providing a second opinion, and Dr. Schaff and Amber both being willing to go forward with surgery without being certain of the outcome. This is a wonderful outcome and story for everyone involved, and it's great for me to just be a part of it."

As for that "Appleton Street" sign that was so infused with meaning for Amber? "She gave me a picture of it that I now keep in my office," Dr. Appleton says.

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HELPFUL LINKS

• Learn more about pericarditis.
• Read about the departments of Cardiovascular Medicine and Cardiovascular Surgery.
• Meet people living with heart conditions like pericarditis in Mayo Clinic Connect’s Heart and Blood Health group.
• Explore Mayo Clinic.
• Request an appointment.

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