Specialized pulmonary hypertension care helps patient breathe easier

Two years ago, Chris had to climb hand over hand just to move. Only 39 at the time, the Anthem resident said he couldn't move 20 feet.

"There was no charge in my battery. I was panting for breath," he said. He also had narcolepsy-like symptoms, falling asleep suddenly during the day. It's fair to say he wasn't able to perform his sales job to his employer's satisfaction.

"They let me go," Chris said. "My doctors thought I was overweight and sedentary, and that sleep apnea was causing the sleep issues." However, he had been diagnosed with and treated for apnea in 2016, and was compliant, using the machine and mask. He also was careful with his diet and was exercising. Yet he kept gaining weight.

"It just didn't make sense," Chris said.

Faced with the loss of income and feeling ill, he sold his condo and furniture and moved back in with his family. It took two years to receive disability benefits.

Care team uncovers source of unusual weight gain

The fact that he had a serious health issue became apparent in September 2017 when he accompanied his family on a car trip to Denver.

"I felt groggy and tired," he remembers. The edema (swelling) in his legs began creeping up his body. His brother told him he didn't look right.

"Looking back, I no doubt was in congestive heart failure due to the rise in elevation, but I didn't know yet what a dire health situation I was in," Chris said.

After returning to Phoenix, he was admitted to HonorHealth John C. Lincoln Medical Center.

"I weighed nearly 450 pounds," he said. "Thirty pounds of it was fluid. Lasix helped me lose those 30 pounds in three to five days."

Anselmo Garcia, MD, a pulmonologist who is an independent member of the HonorHealth medical staff, visited him in his hospital room. The physician quickly recognized that Chris couldn't even lie in bed comfortably. Something was seriously wrong.

"He told me: 'We need to change things, or we need to make you comfortable so that you can check out (of life),'" Chris remembers. "But I love life! I'm going to ride the wave and listen to the doctors. I'm going to battle to a different outcome."

"With early detection and early treatment, we can extend a patient's life and his or her quality of life. That's why we created HonorHealth's pulmonary hypertension program on the John C. Lincoln Medical Center campus."

Therese Sargent, HonorHealth Pulmonary Hypertension Program

A diagnosis: high blood pressure in arteries

Preliminary tests pointed to pulmonary arterial hypertension, also known as PAH. Simply put, it's high blood pressure in the lung arteries. The small arteries in Chris's lungs had become narrow or blocked, forcing his heart to work very hard to pump blood through them. PAH can lead to heart failure in the right side of the heart.

The pulmonologist conferred with Therese Sargent, a nurse practitioner who runs the HonorHealth Pulmonary Hypertension Program on the HonorHealth John C. Lincoln campus. She is an HonorHealth expert for patients with PAH. She diagnoses and treats this rare condition, ensuring that the appropriate tests are performed to confirm a PAH diagnosis and that, once confirmed, treatment begins and is closely monitored.

After 14 days in the hospital, Chris went home. He returned within a week for an outpatient right-heart catheterization that confirmed a PAH diagnosis.

"It showed pulmonary arterial hypertension that was causing severe debilitation," Therese said. "Now we knew exactly what we were dealing with."

Why does Chris have this serious disease at such a young age? It might be genetic. His maternal grandmother died in the '90s waiting for a heart/lung transplant. Many of their symptoms appear to be similar. PAH genetic testing is available through the HonorHealth Pulmonary Hypertension Program.

Pulmonary arterial hypertension treatment makes a 'big difference'

Once diagnosed, Chris started taking two medications, riociguat and macitentan, and began to improve.

"My feet had looked bluish, but with treatment, they got warm and were coming back to their normal color. Blood was reaching places it had not been able to reach before. I could walk farther. When I started taking both medications, I noticed a big difference," Chris said.

But he wasn't out of the woods yet. Two months after his diagnosis, an ambulance rushed him back to John C. Lincoln Medical Center.

"I had two blood clots in my lungs. Therese evaluated me and made the CTEPH diagnosis: chronic thromboembolic pulmonary hypertension," Chris said. Next came a prescription for a blood thinner to dissolve the blood clots and prevent future ones. "Since then, I feel better," Chris said. "With the medicines I'm on, I have more energy. I can travel again and go to concerts. I've lost a lot of weight — about 100 pounds. I'm working hard to get more off."

"Dr. Garcia and Therese have been an amazing team for me," he continued. "They saw me as a person, not as an illness. That's what I needed. I am not my disease! I'm back to doing what I love now, traveling and glamping. On a scale of 1 to 10, I'm at an 8 right now."

In 2018, he returned to Denver on vacation, "and everything went great." He hopes to eventually use a degree he earned at Arizona State University in 2015, a bachelor's degree in liberal studies.

"I want to go into human resources and train employees," he said.

Therese noted that there is no cure for PAH, but a recent right heart catheterization showed improvement in Chris's condition.

"He went from severe to moderate pulmonary hypertension within a year of the diagnosis," she said.

"With early detection and early treatment, we can extend a patient's life and his or her quality of life. That's why we created HonorHealth's pulmonary hypertension program on the John C. Lincoln Medical Center campus," she said. "In Chris's case, he had been seen by pulmonologist before Dr. Garcia saw him, and by a cardiologist, but they missed the possibility that he had PAH."

Learn more

Learn more about PAH by consulting the pulmonary hypertension program at 602-786-0200.

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