By AMERICAN HEART ASSOCIATION NEWS

cathybandy

When a doctor she’d never met walked into Cathy Aumack-Bandy’s hospital room and told her husband that she had severe heart failure and should get her affairs in order, she initially thought he was in the wrong room.

After realizing the diagnosis was hers, the former psychologist from Ruskin, Florida, realized she needed to switch doctors.

“He never even addressed me,” she said. “I had been a healthy 54-year-old and he was sending me home to die.”

Establishing a bond and good communication with your doctor is crucial when dealing with complex medical conditions, said Mariell Jessup, a cardiologist and professor of medicine at the University of Pennsylvania.

“In the old days, the philosophy was, ‘Do what I say because I’m a doctor and you’re the patient,’” Dr. Jessup said. “Today, the bond has to be formed based on respect and acknowledging the need to educate patients as much as possible in terms they can understand about their disease.”

Dr. Jessup said that education is pivotal to empowering patients to make changes that can make a difference in their health, and better understand why they are taking their medication.

“If patients have to follow a complex regimen and they don’t understand why, or the consequences of missing some pills or not recognizing new symptoms, they’re not going to do well,” she said.

After the discouraging meeting with her first doctor in January 2013, Aumack-Bandy found a new doctor who made her feel more comfortable. The picture he painted wasn’t optimistic, but she felt like she could trust him.

“He said, ‘Things aren’t good, but we’re going to work on getting your heart stronger,’” she said. “I always felt he was fighting for me.”

Aumack-Bandy’s health crisis began in late 2012, when she was diagnosed with a respiratory virus. By early January, it not only hadn’t improved, it seemed to be getting worse.

“I couldn’t even walk to the bathroom unassisted,” she said.

Heart failure was the last thing on Aumack-Bandy’s mind; she’d had a full cardiac work-up done a few months earlier as a precaution because of her strong family history of heart disease. Everything looked fine.

Aumack-Bandy spent the first half of 2013 in and out of the hospital, and was given a wearable defibrillator to use, even while she was in the hospital. Her heart function was so poor, she regularly passed out. Because excess weight made her ineligible for heart transplant consideration, Aumack-Bandy’s electrophysiologist suggested an experimental device to improve her heart’s efficiency using cardiac resynchronization therapy.

“I always had trust in my doctors and I thought I knew what that meant, but until you’re dealing with these kinds of issues, trust and communication goes to a whole different level,” she said.

Aumack-Bandy’s condition improved with the CRT device and her heart failure is in remission, despite a rocky year following surgery.  Ultimately, her cardiac diagnoses included dilated cardiomyopathy, heart failure, mitral valve insufficiency, atrioventricular block and multiple arrhythmias, including atrial fibrillation. Damage to her heart also caused secondary disorders: COPD and chronic kidney disease.

She made adjustments to her growing medical team as complications arose, changing one other specialist who didn’t seem to work well with the others.

Aumack-Bandy also made lifestyle changes, overhauling her diet, eliminating added sodium when possible, adding more fruits and vegetables and cutting portions. Her efforts resulted in a 100 pound weight loss even though she was unable to do much physical activity.

While building a strong medical team is crucial, Aumack-Bandy said understanding the patient’s responsibility is equally important.

“Every day, I make decisions that affect how long I will live and how I will live,” she said. “It’s partnership and the doctors have a part and I have a part. If I’m not going to do what they recommend, I’m not going to be well.”

Before an appointment, Aumack-Bandy puts together a list of questions and notes about how she’s been feeling and any concerns she might have. She also always brings her husband so that they both have the information and an opportunity to ask questions.

“If you know you have a lot of questions, ask the scheduler to put extra time on the appointment so the doctor can take the time you need, and make sure you understand what they said and if you don’t, ask again, or call or email later,” she said.

Dr. Jessup said making an audio recording of an appointment can be helpful to reviewing the information later, as well as getting written materials or suggestions for where to go online to learn more.

“Some patients come in and they’re so overwhelmed and anxious that you could be saying anything and they don’t get it,” she said. “They’re listening, but they can’t really hear.”

Dr. Jessup said including family members and caregivers is important because they play an important role in managing health, whether it’s supporting changes in diet, addressing any misconceptions or recognizing when symptoms have changed.

“Doctors expect patients to ask questions,” she said. “We want to establish a dialogue.”

Aumack-Bandy still has some bad days, but is improving overall. She still experiences shortness of breath and fatigue and has to use an electronic cart in the grocery store, but has been able to walk in her pool some days. It’s a far cry from the exercise regimen she had four years ago, when she swam and walked several times a week and was training for a half-marathon.

“Will I ever be doing marathons? No, but I hope to be able to ride my bike around the block,” she said.

Despite her limitations, and her recognition that she will always have heart failure, Aumack-Bandy, 57, is grateful.

“I was given an expiration date of three months, and it’s been three years and eight months,” she said. “I would like to live 30 more years and I don’t know if that will happen, but I’m doing everything I can to be healthy and have quality in my life.”