As a kid growing up near Houston, Amy Burant lived with asthma. It didn’t stop her from doing what she wanted.
“I played soccer and softball, did the drill team and cheerleading,” she said. “I never had any issue other than running in cold weather.”
As an adult, her health began to change. Burant moved to Colorado in 2003 and joined what is now UCHealth University of Colorado Hospital as a nurse. Around 2009, she worked nights in the neuro intensive care unit when new and unusual breathing problems cropped up. The short walk from the hospital’s employee parking garage to the ICU forced her to stop to catch her breath.
“I thought, ‘That’s not normal,’” Burant recalled. She reported the problem to her physicians, who bluntly told her she was overweight, needed to exercise more, and in her words, “threw some inhalers at me” to treat her asthma.
Burant accepted the advice. “I thought, ‘Yeah, they’re right. I’m just going to try harder,’” she recalled. Despite her efforts, though, her shortness of breath not only continued but worsened. She also began experiencing heart palpitations.
The worrisome symptoms didn’t stop Burant from getting the most she could from life. She gave birth to her daughter Sophie in 2009 and continued to work in the ICU until 2011. She then moved into a new job at UCH as a clinical scholar supervising rotations of nursing students. Her symptoms never got better, but she saw them as an unwelcome fact of life.
“Stopping while walking was normal; so were the palpitations,” Burant said. “Later, when I got better, I realized none of it was normal.”
Burant learned in 2013 that her symptoms weren’t the result of her weight or a lack of exercise, or as she once thought, the stress of working night shifts in intensive care for 11 years. The culprit was pulmonary arterial hypertension (PAH), a dangerous form of high blood pressure that creates stress on the arteries feeding blood to the lungs and the right side of the heart. There is no cure, and over time, PAH can lead to right-side heart failure.
A decade later, Burant is successfully managing the PAH that she initially feared was a death sentence. She credits her primary and pulmonary care specialists and the pulmonary rehabilitation team at UCH for recognizing, diagnosing and treating her symptoms and setting her on the path to living and maintaining a healthier life. She even credits her disease for helping her to see life from a new perspective.
Confronting pulmonary arterial hypertension
Burant’s path to her PAH diagnosis began in 2013 with a challenge from her husband, Kevin. Leaving the ICU and the night shift routine hadn’t helped her symptoms. As the six weeks of Lent began, Kevin issued a challenge. He wanted Amy to give up not seeing doctors for the problem.
“He said, ‘Your weight isn’t changing but your shortness of breath is getting worse. Go see a doctor,’” Burant recalled. She admitted to herself that she hadn’t improved and that because of her poor health, she was spending more time watching 3-year-old Sophie do things than actually joining her.
With that, Burant began seeing UCHealth primary care physician Dr. Julia Kavanagh, who ordered a battery of tests of her heart and lung functions. After an echocardiogram – an ultrasound test that yields images of blood flowing through the heart – Burant received ominous news. Kavanagh wanted to see her in person – with Kevin.
Burant learned from Kavanagh that the echocardiogram presented strong evidence that her symptoms were caused by PAH. A definitive diagnosis required a right heart catheterization, a procedure that measures the pressure in the pulmonary artery, through which deoxygenated blood flows to the lungs.
A diagnosis, not a death sentence with the right care plan
The catheterization confirmed that Burant indeed had PAH. It was devastating news. “As an ICU nurse, I didn’t understand pulmonary hypertension,” she said. In her mind, a patient with the condition was someone hooked up to a ventilator, waiting for a transplant. She was convinced that she had only months to live.
“I thought of all the things that I wanted to tell my husband, to tell my daughter,” Burant recalled. She told herself that Kevin would have to make sure that when Sophie attended her high school homecoming that her shoes matched her dress.
In fact, her pulmonologist told her, median survival rates for PAH are measured in years, not months, especially with treatments to manage the disease. You are a data point, not an aggregate number, he told her. There is no expiration date. Your curve could look different.
Treating PAH on several fronts
Burant began a treatment plan with multiple components. It started with sildenafil, a medication that relaxes the blood vessels that supply the lungs. It thus reduces pressure on the lungs and strain on the right ventricle of the heart, said Burant’s pulmonologist, Dr. Todd Bull. Today, Burant takes sildenafil, along with two other medications, macitentan and selexipag, to manage her PAH.
“The medications allow Amy to feel better, do more and exercise more aggressively,” Bull said. He added that diuretics, which reduce fluid buildup caused by her weakened heart, are another important part of her treatment, as are anticoagulants to prevent blood clots.
A previously undiagnosed congenital atrial septal defect (ASD) – a hole between the wall separating the right and left chambers of the heart – also complicated Burant’s diagnosis. The ASD caused blood from the left side of the heart to flow back to the right. The high pressure on the right side created by the PAH forced unoxygenated blood back to the left, to be pumped to the rest of Burant’s body, which became oxygen-starved. As a result, she requires oxygen around the clock.
The treatment plan took some adjustment, Burant said. She had to get used to setting reminders to take her medications. There were insurance channels to navigate. Her 24-hour dependence on oxygen was the toughest challenge.
“Managing the oxygen was the trickiest part – making sure I had enough and getting more if I ran low,” she said.
Rehab and medications: Living with PAH
Under the care of Bull and his team in the UCHealth Pulmonary Vascular Disease Clinic, Burant incorporated the treatment path in her daily life. The positive results dispelled, at least to some extent, her fears of an early demise. The diuretics stopped her heart palpitations. Wearing an oxygen backpack, she began walking short distances and riding her bike to the park with Sophie.
“I felt relief very quickly,” she said. “I hadn’t thought I could live on an outpatient basis.” A trip to Copper Mountain with Kevin and Sophie about a year after her diagnosis brought a welcome sense of hope. Burant couldn’t ski herself, but she relished joining them on the slopes in better health.
“Being present and part of it was awesome,” Burant said. “Hiking from area to area with my oxygen was a big accomplishment for me.”
Building back better with pulmonary rehabilitation
A cornerstone of Burant’s treatment is pulmonary rehabilitation, which she began in July 2013 and continues regularly 10 years later. Of course, she’d rather not be pushed by her PAH to a four-day-a-week regimen in the gym at UCH, but she calls it “the best place you never want to be.”
Pulmonary rehabilitation is a vital part of Burant’s care, Bull said. For many years, he said, providers thought that exerting PAH patients was too risky. In fact, the opposite is true, he said.
“We have learned that exercise benefits patients with chronic conditions, just like it benefits people without medical illnesses,” Bull said. “It builds muscle mass and helps patients use oxygen more effectively.”
Burant said the rehab sessions not only help her to maintain her breathing capacity under the care of an expert team; they offer motivation, camaraderie and inspiration.
“Pulmonary rehabilitation has made me feel strong,” she said. She has lost weight and improved her stamina since returning to the four-day routine that was disrupted, in part, by the COVID-19 pandemic. “It’s as important as the medications I take. I feel better physically, and when I’m not as faithful to it, I feel worse.”
That perception is more than a feeling, said UCH respiratory therapist and pulmonary rehabilitation coordinator Alexandra Worl. Worl pointed to Burant’s improvement on her six-minute walk test, a key measure of a patient’s exercise capacity. Burant’s increased by 70% after starting pulmonary rehab she and has maintained that level for a decade, Worl said.
“Had she not started exercising this improvement may have peaked at about 33%,” Worl said.
Burant’s early challenge was getting enough oxygen while she worked out, Worl added. That’s no longer a worry.
“We learned how to adjust to that and read her needs,” Worl said. “Now she’s independent.”
The benefits of rehab in addition to pulmonary arterial hypertension medications
The pulmonary rehab team does far more than watch over Burant and other patients as they purposefully pace on elliptical machines or treadmills. The therapists help educate patients about the shortness of breath and fatigue they encounter as they work to strengthen their lungs, Worl said.
A rehab session that produces dizziness, faintness and an inability to do everyday activities like doing laundry afterward means it’s time to back off, Worl explained. But with time and consistent practice, many patients learn that their shortness of breath occurs because they are working themselves harder.
“It’s typical to see over time that a patient’s shortness of breath rating remains the same despite an increase in the time and intensity of their exercise,” Worl said. “Patients learn how to interpret their symptoms as a message – not a negative one, but rather, ‘I’m exercising and therefore I’m short of breath.’ They embrace that signal from their body.”
Worl noted that after several moves, the gym has a new home, new equipment and more staff. That’s key because patients referred for rehabilitation can get started quicker. Pulmonary rehab offers many proven benefits for patients, including reducing the risk of hospital readmission and improving survival, Worl said.
As patients regain strength, their quality of life improves and working with a group “empowers patients to see what they are capable of and to encourage others,” she added. “Psychosocial benefits are a built-in part of pulmonary rehabilitation.”
Pulmonary rehab and medications: Pillars for a new outlook
Taking part in pulmonary rehabilitation contributed to another important change in Burant’s outlook. For three years after her PAH diagnosis, she continued to work at the hospital in her nursing role. But she had another job on the same campus, as a patient managing a chronic illness.
“I was a nurse and a patient simultaneously,” Burant said. She had worked at the bedside as a nurse with Worl and other respiratory therapists. In the pulmonary rehab gym, the same people were her medical providers. She was grateful to know them but initially found it difficult to process the change.
“My peers were no longer medical staff; they were patients,” Burant said.
After she left the hospital in 2016, her outlook shifted. “My job became pulmonary rehab, not being a clinical scholar,” she said. “I felt the camaraderie. It was inspirational to see people working as hard as possible to get better. There were no excuses.”
Burant now understands life on the other side of the curtain, as a patient who received a devastating diagnosis. But she also savors, perhaps more than others, the chance to live a full life. Ten years ago, she was preparing Kevin to raise Sophie without her. Today, she is watching Sophie show sheep and ride horses with 4H.
“Having a lack of hope is hard,” Burant said. “Now I actually feel I can get stronger and better, whereas for a long time, I was just trying not to get worse.”