Living With PAH: How Denise Finds Balance, One Breath at a Time

A Life-Changing Diagnosis

For years, Denise struggled with her weight and experienced episodes of excessive sweating. She thought these symptoms were a result of menopause, but they did not subside. 

“I remember taking my child to an amusement park and barely being able to walk around,” Denise said. “I was so short of breath and exhausted. I honestly thought I was just out of shape.”

Denise blamed herself for her symptoms and said she also struggled with insomnia. This affected her ability to focus on work or take care of her home. She admitted that she didn’t go to the doctor very often, and the fatigue was starting to get to her. 

Then in 2013, everything changed. Denise had another medical situation that required a frightening series of tests and appointments. At first, doctors suspected cancer due to her weight gain and fatigue. Denise felt overwhelmed and terrified, convinced she was dying and unsure of where to turn.

“There was nothing I could do,” she said. “Suddenly, I had so many appointments and had no idea what was happening to my body.”

Adding to the emotional weight, Denise had recently lost her brother, a loss that made the uncertainty even harder. As doctors ruled out one diagnosis after another, Denise continued searching for answers. Finally, an EKG revealed that there was a serious issue with her heart. 

That finding led Denise to a cardiologist who immediately recognized the signs of PAH. A right heart catheterization confirmed the diagnosis and revealed dangerously high pressures. The situation was so severe that doctors questioned how she was still alive. Within days, Denise was transported by ambulance for further evaluation and treatment.

Learning to Trust the Process

It took some time for Denise to accept her PAH diagnosis, and she experienced some challenges when searching for a treatment that would work for her. She was referred to a PAH specialist, who started her on a subcutaneous pump therapy, but without insurance at the time, navigating approvals was difficult for her. Her team advocated on her behalf, and with their support, Denise was approved for disability and treatment coverage through Medicaid at first, then she continued to receive coverage through nonprofits, allowing her to focus on her health.

Within about six months, Denise’s PAH specialist added an oral PAH medication as well. This regimen became part of her long-term routine, and it has worked for her. 

“Looking back, I’m just grateful my care team moved quickly and supported me every step of the way,” Denise said.

However, for a long time, Denise stayed close to the couch, afraid that movement might push her too far. 

“I trusted my doctors to do what they felt was best for me,” Denise said. “But I was in total shock and didn’t know what to do. I thought I was going to break if I moved.” 

Support groups didn’t immediately appeal to Denise, but eventually she decided to attend one. This eventually led her to attend the Pulmonary Hypertension Association (PHA) Conference in 2014, an experience that became a turning point for her. There, she visited a booth and spoke to a representative about mentoring others living with PAH. Since then, she has supported other patients through mentor calls and other levels of support.

“My parents had a restaurant when we were little, so we were always giving to others,” Denise said. “It’s how I was raised, and I enjoy it.”

Adjusting to Oxygen and Letting It Help

Several years into her journey, supplemental oxygen became part of Denise’s routine. Initially prescribed for nighttime use after sleep studies revealed oxygen drops into the 80s, the transition wasn’t easy. Wearing oxygen while sleeping, in addition to managing her therapy, required patience and adaptation.

“At first, I’d wake up and realize my oxygen cannula was on my pillow or on the floor,” Denise said. “It wasn’t an easy transition, but it eventually became part of my routine.”

Over time, oxygen became less of an obstacle and more of a support. Denise noticed the difference immediately when she didn’t use it. She said she felt groggy and fatigued the next day. Now, she reframes oxygen as a tool, not a limitation.

“It’s not something that should make you feel like less of a person,” Denise said. “It’s like taking a pill every day; it helps keep me going.”

That mindset shift has helped Denise return to activities she once feared losing, including swimming, a lifelong love. Overcoming the fear of setbacks in her care was a personal victory for her. 

“Now I swim about once a year,” Denise said. “Still, it’s a wonderful feeling.”

Living Fully, One Day at a Time

Daily life with PAH requires planning and flexibility, and Denise has learned to listen to her body by slowing down when needed, forgiving herself when plans change, and trying again another day.

“I make myself get up and get dressed every day,” Denise said. “Even brushing my hair matters.”

She also finds joy in small, grounding moments, like tending to the many plants scattered throughout her home, cheering on her friends’ kids at their sports games, and volunteering at local festivals and youth events. She loves spending time with family and friends and simply showing up for the people who matter most. And through it all, her beloved border collie is always by her side. 

Her relationship with her care team has also become a source of comfort and strength. Built on trust and mutual respect, those connections remind Denise that she’s never navigating PAH alone. The same is true of her husband and the broader PAH community.

Looking back, Denise defines perseverance differently than she once did. 

“It’s learning your new normal,” she said. “You push yourself a little, but you forgive yourself when you can’t. If you can’t do it today, try again tomorrow.”

That balance between effort and grace is where Denise finds her strength. Today, she continues to rediscover joy, purpose, and motivation, one breath at a time.