Ambassador Spotlight - Karen

Artist, leader, patient

Karen’s battle with PAH leads to renewed creativity

Karen barely remembers that day. And yet, it’s one she’ll never forget.

She rose from her hospital bed and made her way to the bathroom, her hands clutching a pillow. She remembers SNL playing quietly on the TV in her dark room.

After closing the bathroom door, she rested her face against the sink. She breathed in. Then, she collapsed.

Thumbnail for PAH Initiative Ambassador Karen’s article about reclaiming her body and life after a PAH diagnosis

“I’ll never forget it,” she says. “That’s when everything went black.”

Karen was experiencing right heart failure. She then spent the next 8 days in the ICU. Of that, she says she remembers very little. Many of the IVs, tubes, tests, procedures, and specialists were a blur.

She had initially landed in the emergency room after receiving an abnormal EKG result from an outpatient urgent care center. For years, she’d been told that it was only high blood pressure that was causing her symptoms. The nurses at the free clinic she’d gone to just the week prior didn’t have an EKG and Karen didn’t have health insurance.

Yet, despite the false alarms and financial roadblocks, when the time came, Karen knew she needed help. She trusted her gut.

And she was right. Just 2 days after fainting in the hospital, a right heart catheterization revealed that something really was wrong.

Karen was diagnosed with pulmonary arterial hypertension, or PAH.

Then, the real work began.

Making a change

In 2013, Karen was thrust into an unfamiliar world. At just 48, she was told that she had a very rare, life-threatening disease. “Hearing that I was going to need an infusion pump and be on oxygen 24/7 made the seriousness of my condition set in. I started bawling,” she says.

She was told she could no longer work at the salon as a hairstylist and decided to move in with her parents. She spent every hour of every day on oxygen. “I lost 60 pounds in just 2 months. I felt like death.”

She says the first year after her diagnosis was nearly impossible at times. Karen struggled with her weight, her oxygen tanks, and walking.

On top of her PAH diagnosis, she needed hip surgery. If she chose not to have it, she’d have to use a wheelchair, though surgery carried significant risks also.

Karen decided to have surgery. She weighed the pros and cons with her healthcare team. She knew that if she was no longer able to walk, it might be harder for her to meet her goals. She knew what she wanted to do. So, she gritted her teeth and took the plunge.

After she woke up from surgery, the recovery was exhausting. But she felt as though she could handle it, no matter how hard. More than anything, she was just grateful that she woke up, and after, she vowed to overcome any challenge she faced.

She spent the next few months working with her healthcare team to reclaim control of her body. She lost more weight, no longer required supplemental oxygen, and started participating in PAH events. She made drastic changes to her lifestyle and was determined to do hair in some capacity. She made close connections with PAH support groups and other people living with PAH that helped her on her journey. She persevered.

PAH patient and ambassador Karen laughing as she participates in PAH Initiative activities

Learning through leading

In 2017, Karen took another big leap. She became a PAH support group leader through the Pulmonary Hypertension Association. Before, she had to travel over an hour to attend the group meetings. Then one day, the idea came to her. “I figured, well, patients have to start the groups ... so, why don’t I just do it?”

Since then, Karen has run a well-attended support group in her town. She loves connecting with her friends and sharing key insights, experiences, and information.

Karen often attended PAH-related events and met with fellow PAH patients in person. She took every opportunity to connect with the community. That is, until March 2020, when much like the rest of the world, she suddenly found herself cut off. “I was terrified. I thought we were all going to get COVID and that would be it,” she says, with a sigh.

The pressures of social isolation and the fear of contracting the novel coronavirus overwhelmed her. That spring, she left the house only a handful of times, never straying beyond her mailbox.

But Karen waded through her anxiety and tried to be there for everyone, though it was hard. She found ways to cope, like journaling and learning about COVID-19 through the PAH Initiative website and social media channels. But at the first virtual sessions, she saw less attendance, and the other group members reported feeling pressure from living through a pandemic, too.

Eventually, though, after months of wiping down packages and staying home, Karen was relieved as information about COVID-19 and PAH patients became available. “Together, the group learned more about what to expect with COVID and PAH. As time went on and we gathered more information, we all worried only as much as we needed to,” she says.

Now, Karen has become more comfortable with her new “normal” and maintains her relationships with the PAH community. When it comes to members who no longer attend meetings because of technical issues or lack of access, she calls once a month to check in. “It’s fun now, even virtually! We had a big virtual Christmas party, scavenger hunts, and costume parties,” Karen says.

Care with a little creativity

Though she stays busy with her group meetings and keeping up with her care, Karen still finds time to explore her interests. She cooks, pet sits, participates in PAH Initiative activities as a patient Ambassador, and does hair as a hobby at friends’ homes, but spends the larger part of her time creating watercolor paintings. “I had never done anything like it before,” she says.

What started on a whim developed into her new, unrivaled passion. A few years ago, Karen graduated from coloring books—which she’d often fill up completely—to full-blown paintings featuring florals and bright hues. “At a PAH fundraising auction, we auctioned off one of my paintings. We raised a lot! I thought it was amazing that I could do that with my art. It was the first painting I ever sold,” she says.

Karen uses painting to unwind and believes that creative outlets can be calming for people living with PAH. Now, as an artist, leader, and patient, she advocates for PAH in her local community as well as across the country.

She’s proud of the friendships she’s made, even if they started from an unlikely place, or even a rare, unwelcome diagnosis. “What can I say?” she says with a laugh. “I have a big, messed-up heart.”

Learn more about PAH

PAH is a complicated disease that can be difficult to understand. We’ve broken it down for you with easy-to-understand information, simple graphics, and informative videos from a PAH specialist.

What Is PAH?