Tiffani Brown (left) and her nurse Debbie Kittel.
When Tiffani Brown was diagnosed with pulmonary arterial hypertension in 2020, she was dismayed to learn she had to give up water activities. She began subcutaneous treprostinil therapy, which is administered through a pump under the skin. The infusion site must be kept dry to avoid complications.
For Brown, who loves water activities and has a backyard pool, no longer being able to swim felt like a harsh restriction.
“Swimming was always a big part of my life,” Brown says. “It was a staple growing up, and I wasn’t willing to give that up just because of my diagnosis.”
Seeking solutions
Brown’s determination to maintain her lifestyle led her to seek creative solutions. She found online support groups where patients shared tips for disconnecting their pumps temporarily to swim.
“I would turn my pump off, disconnect for two or three hours, then reconnect,” Brown recalls.
Although Brown sometimes developed nausea and headaches when the pump was off, she felt the joy of swimming was worth any risks. However, she knew the treatment interruption could worsen her symptoms over time.
‘A-ha’ moment
Brown’s situation changed when she discovered the Allevyn Life Dressing. The multi-layered foam dressing is designed for wound care. It promotes healing and provides absorbency, cushioning and comfort while reducing the risk of leakage.
Brown shared her discovery with her nurse, Debbie Kittel, who was familiar with Brown’s struggles with treatment side effects.
“It was really hard for her to keep up with the site pain and therapies, so I worked closely with her to come up with ideas to improve her quality of life,” Kittel recalls.
Together, they experimented with the silicone gel adhesive dressing, which allowed Brown to waterproof her infusion site and swim without disconnecting her pump.
Jumping in
The results were impressive. By applying the dressing carefully over her site, Remunity pump and tubing, Brown could stay connected to her pump and still get in the water. “It was like getting a piece of my life back.”
This breakthrough not only allowed Brown to swim daily, but it also reduced the joint and leg pain caused by her treatment. Swimming became a form of physical relief and improved her mental health, alleviating depression often associated with chronic illness.
Continued success
Encouraged by Brown’s success, Kittel began testing the dressing with other PAH patients. Many have since used the dressing to keep their infusion sites dry and secure.
“We’ve had great success with the dressing, especially for patients who need to shower,” Kittel says.
Kittel says only patients on subcutaneous therapy should use the dressing for swimming. People on IV therapy shouldn’t swim or submerge themselves in water — even with the dressing — because they risk infection or the tube coming out.
However, those on IV therapy can use the dressing when showering or wading to keep their sites dry. Although some male patients have had difficulty securing the dressing because of body hair, many of Kittel’s patients report using the dressing regularly.
These successes show great promise, Kittel says. The silicone gel dressing has provided people with PAH a way to keep their sites dry, reduce treatment interruptions and improve quality of life.
Spreading the word
Kittel introduced the Allevyn Life Dressing solution to the PH professional community at PHA’s 2023 PH Professional Network Symposium. Her abstract was selected for a Lightning Round poster presentation at the symposium, as well as PHA 2024 International PH Conference and Scientific Sessions in Indianapolis.
The research highlighted the dressing’s waterproofing capabilities and showed how the covered infusion site, tubing and pump prevented moisture intrusion when submerged in water.
“This innovation promises to improve quality of life for patients by allowing safe participation in water activities, with additional studies underway to assess its effectiveness and patient satisfaction across a larger cohort,” says Zan Laughlin, director, quality care and research, PHA.
In addition to allowing people with PAH to participate in water sports, Brown and Kittel’s experiment demonstrates the value of listening to patients. While health care professionals are experts in the medical aspects of PAH, they don’t always understand the daily challenges of living with the condition, Brown says. “Until they experience it firsthand, they don’t get it,” she says.
Patient-caregiver teamwork
Kittel’s close relationship with Brown allowed her to better understand these struggles, and that understanding led to the development of the silicone gel adhesive dressing solution.
“Patients are living this every day and often find ways to make their lives easier,” Brown says. “Health care providers need to be open to exploring these ideas and testing them.”
This article appeared in the spring 2025 issue of Pathlight magazine. Pathlight is the Pulmonary Hypertension Association’s quarterly member magazine. PHA members: Sign in to read this story and other articles online. Not a member? Join or renew your membership to receive Pathlight in the mail and online.
