Reaching Her PAH Goals

Trailblazing Down an Unmarked Road

When Gwen first experienced symptoms, she spent time in the hospital while doctors looked for the cause. Eventually doctors diagnosed Gwen with PAH—at the time called primary pulmonary hypertension. During that time, Gwen was a military wife, a mother to a preschooler, and just 25 years old. Her doctor told her there was little known about the condition due to lack of research and treatment. He sent her home and told her to get her affairs in order because he didn’t think she would live past age 28.

But Gwen didn’t go home and prepare to die. Instead, she went to the medical library and looked up her condition—only to find a single paragraph about it in all the medical literature she could find. She didn’t know how to navigate her new situation; she only knew that she must.

Why Me? Why Not Me?

Gwen never asked herself, “Why me?” Instead, she asked, “Why not me?” This perspective helped her keep the attitude she wanted as she forged a path for herself through unknown territory. Gwen focused on a lifestyle that included healthy eating. She changed her diet, cutting out salt and unhealthy foods. She also became a support group leader for others living with PAH.

Several years later, Gwen and her family were living in California when she began her first PAH treatment with calcium channel blockers, the only option available at the time.

Some years later, Gwen began to rely on oxygen and ended up in a wheelchair due to weakness. She felt that she was getting worse every day. Just as Gwen became sicker, a new drug trial began, and her doctor told her she was an ideal candidate.

The clinical trial team flew her and her family to the teaching hospital, where she met one of the first doctors conducting PAH research. Gwen admits that she was afraid—the medication would be delivered intravenously (IV) via a pump once they inserted a long, thin tube into a large vein above her heart. But her daughter encouraged her, telling Gwen she’d rather have her mom here with a tube in her than the alternative.

With those words, Gwen started on the medication and went back home, back to her life.

By the time she returned for a follow-up visit, she was no longer using oxygen and could walk without assistance. “I was able to do more—like clean my house. I had gotten some part of my life back,” says Gwen.

Circle of Life

Gwen imagines her healthcare team as her “circle of life.” Each person has a role and contributes to her care. In turn, she contributes, too, by being eager to learn, following their medical advice, and sharing openly with her healthcare providers. In her mind, the ideal way to manage her condition is to have this constant feedback loop of education, support, and humanity.