Colleen Schnell, Niagara Falls, New York, was a preschool teacher until health issues forced her to quit her job. She was 24. Schnell was born with a congenital heart defect, which led to pulmonary arterial hypertension by the time she was 9 months old.
Until my mid-20s, my family and I focused on my heart defect, not knowing anything about PAH. Then my everyday shortness of breath and fatigue — and the new feeling of an elephant sitting on my chest – made me feel like I could barely get through a day.
My primary doctor asked if I would go out of state to see if I needed a double lung transplant, so I ended up at Cleveland Clinic in Ohio. Instead of the transplant, I started on Tracleer (bosentan), which had been approved a year before, after several months of going back and forth to Cleveland. That first shipment led me to the Pulmonary Hypertension Association website, and I spent weeks reading message boards and crying in disbelief that there were others out there who completely understood how I felt my entire life.
After a couple of years, a PHA staff member asked me to start a support group in western New York. Being a shy person most of my life, I couldn’t imagine being in front of adult strangers and trying to lead them with support.
I had to pray about it a lot. But I finally decided to do it. In August, that PHA support group, now called Buffalo-Niagara PHriends, turned 19 years old. I still get nervous almost every meeting, and I’m not sure why. But I am motivated to help others with this disease because I still remember how long it took me to find support.
The group is not huge; we’ve lost members along the way. But I truly believe a support group is two people or more. So, if I have a meeting and only two people show up for it, then it must mean they need support, and I will be there.
I’m most proud that I actually started the group despite how scared I was, and that I try to keep it going no matter what. I hope to keep it running as long as I have the health and ability to do so.
