Nancy on Navigating Life with PAH

Nancy was always a social person and an active member of her community. As an experienced elementary school teacher, she went above and beyond by hosting staff development opportunities and creating writing programs for English language arts.

“I call that my other life,” Nancy said. “It’s sad in some ways, but I’m not the kind of person who will just allow those doors to close.”

Nancy is no longer able to teach full-time in a classroom or take part in social activities like she used to, but she chooses to look forward, toward the future. After all, going back to her life before her diagnosis is not an option.

“There is a reason that the windshield is larger than the rearview mirror,” Nancy said. “It’s more important to focus on what’s ahead.”

The day Nancy received her diagnosis, she felt overwhelmed. It felt like she was handed an enormous book and told to read it quickly because this would encompass the rest of her life.

“My brain immediately went into panic mode,” Nancy said. “Would I get to see my youngest graduate college? Would I get to hold my grandbabies? My mind darted to my worst fears.”

Nancy realized that she needed to learn everything she could about PAH and the therapies that were available to reassemble her life in a way that was true to who she is. So that’s what she did. Since Nancy couldn’t learn everything about PAH all at once, she took her journey one step at a time. Being open and honest with her doctors was an important first step.

Overcoming Challenges with Treatment

Nancy feels very positive and confident about the way she manages her disease with her healthcare team. She regularly schedules appointments to track her progress, follows the advice that her doctors give to her, and asks questions frequently. It’s helpful for Nancy to compare current and past test results so that she can discuss concerns with her specialist.

“You have to know your body, and I do now. I know it so well,” Nancy said.

When Nancy started her treatment, her specialist recommended an infused medication delivered by a pump. Learning to live with it was one of the biggest challenges Nancy had to overcome. Carrying the necessary supplies in case of anything unexpected and getting used to sleeping and showering with it was difficult. Nancy’s PAH specialist was very supportive. He shared strategies that other patients found helpful, like wearing the pump instead of carrying it.

It helped that Nancy had her husband to assist with mixing medication cartridges, changing her catheter bandage, and listening for any pump alarms. They often joked about their life becoming like a medical television show. Finding humor in an otherwise serious situation helped Nancy keep her head above water during her treatment process.

Nancy’s PAH specialist later switched her to an oral medication. This meant adapting to new side effects. The most difficult side effect for Nancy was headaches.

“My headaches definitely changed the way I live my life, and I talk about this with my doctor frequently,” Nancy said.

Communicating with her healthcare team lets Nancy and her doctors work through challenges together. Her specialist adjusted her dose in order to keep Nancy as comfortable as possible while working to improve her condition.

“PAH patients need to consider themselves an integral member of their own care team,” Nancy said.

She is grateful to her PAH specialist for teaching her what a good doctor-patient relationship is supposed to be like. Nancy and her specialist always discuss how she is feeling first at appointments, and she feels comfortable sharing her fears and asking hard questions. Nancy understands that it takes time for medications to show their potential, and she trusts her specialist to be forthcoming about what to expect with any given treatment option. Looking toward the next bend in the road with hope and humor helps Nancy persevere through the difficult moments.

Finding Joy on Her PAH Journey

For Nancy, the challenges she has faced during treatment have been worth it. Taking time to enjoy little things—like her beautiful flowers, her precious dogs, and playful birds flying past her window—reminds her of all the value in her life. Nancy’s journey has taught her a lot about her own strength, resiliency, and determination.

Nancy intentionally sets realistic limitations in her daily life. That means saying, “No” to lunch, dinner, and party plans most of the time and finding new ways to spend time with friends while listening to her body.

It’s an intense way to live, but it’s a necessary way to live,” Nancy said. “My husband and I had to redefine ‘fun.’ Now, it involves more puzzles than parties, more healthy cooking at home than dinners out with friends, and more driving to interesting places than dancing.”

Nancy hopes to inspire others to be prudent about their care and find a medical team that is the right fit. She feels that every person living with PAH is unique and that patients can find comfort in each other’s experiences.

According to Nancy, “Therapy for PAH is not an event, it’s a journey.”

She believes that her journey is what she makes it and looking for the beauty and goodness in every day is important.

The Importance of Education

Today, Nancy still feels like a teacher, only now she is working to build a different curriculum—a curriculum for PAH patients like herself. She believes that everything leading up to this point in her life was preparing her for what she’s supposed to do from this point forward. In the future, Nancy hopes to speak to patients who are newly diagnosed with PAH to offer support and help them adapt to the challenges they might face.

Nancy remembers feeling like a ‘deer in headlights’ when she was first diagnosed. She had a million questions and wished she could have spoken to a PAH patient. Now she hopes to be a person who can answer questions for newly diagnosed PAH patients.

She is determined to raise awareness of PAH and do whatever she can to help other individuals affected by this chronic disease.

“We’ve got to get the word out to general practitioners about pulmonary hypertension.” Nancy said, “We also need to get the word out to the general population that there are people with diseases that might not be obvious on the surface but really do affect their lives.”

Looking Back While Thinking Ahead

The only time Nancy looks back in the rearview mirror is to see how far she has come. She hopes that the way she chooses to live with her disease sets an example of courage and constant hope for others.

“In some ways, I like myself better now that I have my priorities straight and proved to myself what I can do, even in the face of my greatest fears,” Nancy said. “It sets me up for the excitement of what more I can do in the years to come, like holding more grandbabies.”

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