For the first decade after Gail Boyer Hayes was diagnosed with idiopathic pulmonary arterial hypertension, there was no Pulmonary Hypertension Association and little information about PH.

Diagnosed in 1983, Hayes is among the longest-living people with pulmonary hypertension. She authored the first three editions of PHA’s “Pulmonary Hypertension: A Patient’s Survival Guide,” the precursor to “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients.”

Years before her diagnosis, Hayes experienced typical pulmonary hypertension symptoms and had a challenging pregnancy in the mid-1970s. After her daughter Lisa’s birth, Hayes saw doctor after doctor, and received multiple misdiagnoses.

In 1983, Hayes and her husband Denis moved to Palo Alto, California. In December of that year, she was correctly diagnosed at Stanford University. Because of her health, she stopped practicing law.

Although doctors at Stanford suggested a heart- lung transplant, Hayes said her disease was progressing slowly enough that she believed science would develop something less drastic than a transplant. She committed to being active, convinced it would improve her wellbeing. She got a dog, which she says weighed more than she did, and it needed to be walked.

Because information about PAH was so difficult to find, Hayes often went to the Stanford University medical school library to read every article she could find.

In 1993, the family moved to Seattle. The move was stressful, and Hayes’ heart was failing. Her heart rate rose to more than 100 beats a minute. It finally slowed, and her doctors at the University of Washington suggested a single-lung transplant.

Hayes again declined transplant. Just before moving to Seattle, she found an article in the Stanford medical school library that discussed how calcium channel blockers helped some people with PAH.

Armed with that information, Hayes worked with David Ralph, MD, at the University of Washington to see how she might manage on nifedipine. She was lucky: it kept her alive another 10 years.

Finding her people

Meanwhile, Hayes saw a notice on the bulletin board in University of Washington’s pulmonary division that some people with PH had started a support group. She immediately connected with them. She also learned about PHA’s first International PH Conference and Scientific Sessions in 1994 near Atlanta.

At the conference, she met others with PH for the first time. She loved getting to know them and the doctors who devoted their careers to her rare disease. The passion within the small community was palpable.

“These are my people,” she thought. “They understand!”

Hayes attended PHA’s first 12 conferences and frequently gave blood samples in the conference Research Rooms, knowing she was helping advance understanding of PH.

Getting involved

Hayes became good friends with Bonnie Dukart, the first person with PH to serve as PHA board president. She jokes that Dukart “tricked her” into writing the Patient’s Survival Guide. Later, Hayes joined the PHA Board of Trustees, serving from 2004 through 2007. PHA gave her the purpose she missed from her career.

Although she no longer volunteers for PHA, Hayes reads Pathlight cover to cover and skims every issue of Advances in PH to keep up on research. (She recommends the July 2023 Advances article on diet and exercise.)

She still attends PHA events, including the PHA Connects: PH Community Workshop in San Diego, where she learned about new medicines in development and connected with staff, patients and health care providers.

“Volunteering — whether it’s serving as a support group leader, answering the support line, participating in research or sharing your story — is all so valuable,” Hayes says.

True survivor

Hayes chalks up her longevity with PH to luck, her own research, excellent doctors and tenacity.

She also credits her strong relationship with Denis, to whom she has been married for 52 years. When PH forced Hayes to give up her career and become dependent on Denis, they experienced relationship problems. But they found counseling and made it through.

Hayes also believes her lifestyle contributes to her health. She walks at least a mile every day and eats primarily a Mediterranean diet, with almost no red meat and no processed meat.

In 2021, Hayes moved to Santa Barbara, where Jeffrey Sager, MD, has helped her try newer PH drugs.

Though she no longer has hopes of playing tennis, at age 80 she’s trying to maintain the status quo: “Just walking up the down escalator is good enough.”

She also tries to stay socially engaged. She connects with others through continuing education classes and book and writing groups.

Gail and Denis Hayes recently revisited California’s redwoods and sequoias, where they stood quietly among living things far bigger than themselves and “in many ways wiser.”

Although the Big Basin Redwoods fire of 2020 destroyed every structure and most trees, the old-growth redwoods survived and are sending out new green shoots.

“Redwoods were around when there were dinosaurs; they’re the real long- term survivors,” Hayes says.

Such experiences help her get through the challenges of PH.

“We PH patients have our good days when we can almost kid ourselves into thinking we’re normal,” she says. “Then there are those days. I try to recall moments of joy when I’m down. I remind myself that patients far sicker than I, and less fortunate, are still leading happy, useful lives.”

This story originally appeared in the most recent issue of Pathlight, PHA’s quarterly member magazine. Join or renew your membership to receive Pathlight at home.