Lifting the Weight of the Wait
Published January 2019
Abbey’s Heart Transplant in Time
Abbey Cannon will never forget the day she finally received her new heart at Northwestern Medicine Bluhm Cardiovascular Institute at Northwestern Memorial Hospital.
The heart transplant operation took half the time predicted; she was fully awake early the next morning, and walked to the bathroom that afternoon. “[My care team] called me a rock star,” she remembers with a laugh. Comparatively speaking, that was the easy part.
The 38-year-old had been waiting five years for a heart transplant following her diagnosis with a genetic heart mutation known as hypertrophic cardiomyopathy (HCM). HCM is the most common of all genetic heart conditions, affecting more than 1 in 500 people, according to the Hypertrophic Cardiomyopathy Association. Still, it was a shock for Abbey to learn she had HCM when she went to her local emergency department in Nashville, Tennessee, with a pounding, racing heart and tingling down her left arm.
“Going to the ER probably saved my life,” she says. “I hadn’t had a heart attack, but there was a ton of scar tissue that had developed over time as my septum had thickened between the two halves of my heart.” She was told she would need a heart transplant sometime in the next 10 to 15 years. In the meantime, she began taking medication and had a gastric sleeve operation that helped her lose 85 pounds, since her BMI (body mass index) was initially too high to make her a transplant candidate. But there were still more tests to pass.
An Uphill Battle
Every three months, Abbey took a “VO2 max test,” in which she ran uphill on a treadmill with a mask on her face to measure the maximum amount of oxygen she could take in. She needed a score of 14 or lower to qualify for the transplant: Her score was consistently 15. Still, she was on disability from her banking job, got winded walking to the car and went to bed by late afternoon.
“We were afraid she could die in the next six months.”— Allen S. Anderson, MD
Abbey and her husband decided to move back home with family in suburban Chicago, to consolidate their resources, get more support for Abbey and seek care at Bluhm Cardiovascular Institute at Northwestern Memorial Hospital. It was there that Allen S. Anderson, MD, a heart failure and heart transplantation specialist, asked Abbey a revealing question.
“He asked me whether my bathroom [at home] was upstairs or downstairs, and how many days a week I showered,” she recalls. “I realized I had gone from daily showers to twice weekly showers because of the stairs in my house. From there I saw all the other adjustments I had been making that weren’t normal.”
Her first VO2 max test score at Bluhm Cardiovascular Institute was a 12. Because of this rapid decline in her functional status, Dr. Anderson and her care team felt it necessary to admit her for closer monitoring and therapy. That decision also increased her priority status on the transplant list.
“The results of Abbey’s cardiopulmonary exercise test gave objective evidence of her poor functional capability and were typical for patients with end-stage hypertrophic cardiomyopathy,” Dr. Anderson says. “We admitted her because we were afraid she could die in the next six months, or deteriorate to the point that she would no longer be a candidate for transplant.”
“They told me I would get my transplant possibly within three months,” Abbey says. “I was so joyous, because it was almost my turn.” She ended up waiting only 33 days, and came through her transplant surgery with flying colors.
“Abbey had one of the shorter lengths of stay I’ve seen,” affirms her Bluhm Cardiovascular Institute cardiac surgeon, Andrei Churyla, MD. “There were no complications, and the fact that she’d had no prior surgeries was important for her good recovery.”
Abbey began cardiac rehabilitation two months after her surgery and returned to work three months after that. Now, she’s ready to do even more.
“You’re scared to do anything physical when your heart has been bad for so long,” she says. “But rehabilitation gives you trust, and now I’ve run my first 5K.” Almost two years after her transplant, Abbey is still quick to credit her Northwestern Medicine care team for her newfound confidence and capabilities.
“From day one, Dr. Anderson advocated for me, so I didn’t have to sit at home and pray that I would live long enough to get a heart,” Abbey says. “He knew I couldn’t afford to wait. Northwestern Medicine works collaboratively for you. They always ask, ‘What is good for this patient?’”