By Alicia Kubes
Being diagnosed with pulmonary hypertension (PH) in February 2018 and starting intravenous therapy was a complete shock. I had no idea this disease existed and that there were people out there walking around connected to pumps.
When I attended the 2018 Pulmonary Hypertension Association (PHA) International PH Conference and Scientific Sessions, I was nearly moved to tears. I saw other patients with pumps and oxygen concentrators for the first time and felt the warmth of their smiles.
I was thrilled to meet knowledgeable, kind people and learn valuable tips about treatment and advocacy. It reminded me how lonely and unprepared I felt navigating my life being the only person I knew in this situation.
I was also emotional the first time I called the PHA telephone support group, and Carol Bowling said, “Welcome to the family you never wanted to be a part of.” From my experience, I can attest that it’s incredibly important for there to be multiple and ongoing opportunities for PH patients to connect and I’m grateful to PHA for providing the platform to do this.
I started the New York City-Manhattan support group in 2018 with my sister because I wanted more opportunities to meet other PH patients. We have seven to 10 members who used to meet at community spaces and restaurants. Recently, we went on a virtual visit to the Metropolitan Museum of Art. (During the day, I oversee non-credit programs in the arts and humanities at the Center for Applied Liberal Arts at the NYU School of Professional Studies.)
There’s really nothing as energizing and inspirational as talking with support group members. I admire every participant in the NYC-Manhattan group for sharing their stories (the good and the bad), resources and advice. They are my inspiration, along with my sister, Adriana, and my partner, Grant, who attend meetings and give me the courage to keep the group going despite some physical challenges last year.
What makes them a great support system is the way they help me keep a healthy perspective with love and humor. I don’t know how many patients laughed the first time they primed their infusion pump, but I did when Adriana said, “Think of it as another body part. Now, there’s more of you to love!”
Sadly, at this very moment there are others being diagnosed and feeling as scared as I felt during those first months. To them, I want to say, “I’m glad you found PHA, and please take advantage of the support groups.”
To find an upcoming virtual support group meeting, check PHA’s support group meeting calendar. To start a support group in your area, submit a volunteer application.