PAH Ambassadors Share Their Goals

Denise, a PAH patient, leans on both her loved ones and her doctor for support in setting and reaching goals in her PAH journey.

“For the past [nine] years, I feel like my husband and I have made a great team,” Denise says. “He knows when I’m having a bad PH day and steps up to help with anything needed for me or our fur babies. He has cheered me on, helping with my goals post-diagnosis as well as eating dietary-restrictive foods. My doctor and I have also worked closely together over the years, setting goals and reaching different ones. My major goals are to feel better and to slow the progression of my disease. I feel like my body can handle more activities than I could in the beginning. I am able to walk farther than before, and I have more stamina in doing everyday tasks. I still get tired and may need breaks but I’m definitely better since starting my medications.”

John, another PAH patient, said the biggest challenge after his diagnosis was coming to terms with his disease and working toward a treatment goal. “The goal I talked about with my doctor was to keep my PAH from progressing as much as possible. I wanted to be as healthy as I could be.”

John doesn’t love having to take PAH medications but realizes they are needed until researchers find a cure. “Every time I take all my meds, I think to myself, ‘I never thought I’d be that guy that takes so many pills a day and an inhaled medication,’”John says. “But I’m also happy they helped me get where I am. Now I’m able to do a mile walk in the morning, five days a week.”

John explains that he tries to eat a healthy diet and exercises and works out consistently. “I don’t overly indulge with cheese, red meat, and red wine—my weakest links and my loves. The hardest thing for me was to see other people, very out of shape, smoking like a chimney, eating a bunch of bad food, and having a smile on their face. All the while, I worked out and was in fairly good shape, but there I was—out of breath, carrying around oxygen on a dolly. I finally had to take the advice of my cardiologist, who told me in the very beginning that I have to own this. That was the most difficult part for me. But with the help of my wife and some tough love on her part, I came to grips with it.”

“In order to make it with PAH, it takes a lot of faith, friends that love you like family, family that love you like a dear friend, and some great doctors that care and are knowledgeable so they can steer you toward the right treatment plan,”John adds.

We hope the examples shared here are a helpful starting point, but they’re just that:a starting point. Every patient is unique, and so is their journey with PAH. Only you know what you want to achieve. Talk with your doctor about what’s possible and how to get there. That’s why it’s so important to learn how to have open and honest conversations with your doctor. Talking to your doctor about your health and how you can manage PAH for the future is the first step in taking real action toward your treatment goals.

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