The Pulmonary Hypertension Association (PHA) hosts six telephone support groups to offer connection, information and inspiration to pulmonary hypertension (PH) community members from anywhere they have a telephone connection. Even if you don’t have a support group near you or don’t feel well enough to leave home, you can always access support. Benita Kosiara, who participates in the patient telephone support group, says, “I enjoy hearing other folks tell their pulmonary hypertension (PH) life stories. Glad that we have this available to tell ours!”

Each of PHA’s telephone support groups is led by a trained volunteer leader who opens the call with announcements and ground rules, facilitates introductions and makes sure each attendee has a chance to share if they’d like.

Jackie Woosley, bereavement telephone support group facilitator, shares her experience: “The bereavement telephone support group that I moderate has helped me in my grief with losing my daughter. It gives me another way that I can honor her spirit and keep her alive in my heart and memories. I feel that other people who have participated have taught me and given me comfort in knowing I am not alone in the feelings of grief that I have and that the best thing we can do to honor our loved ones is to go on living the best we can and help each other.”

Kandi Parker from Wyoming praises her experience on the telephone support group for patients.

“It was comforting to meet many people from all parts of the country who are experiencing the same health issues that I struggle with. A great amount of information that has been shared has been helpful to me through these monthly calls. Many people talked about their feelings and what they had discovered, which helped them through the tough times with PH. There have been many times that we all have ended up laughing about some of our stories and questions. What a wonderful experience that has been!”

“Talking to others has let me believe that continuing to find ‘new normals’ is normal with people who have PH,” Kandi continues. “The most important take away I experienced was, on my first call, one very sweet lady said that she has had pulmonary arterial hypertension (PAH) for 18 years! That one statement gave me such true hope that I could live with PAH for many more years than I thought I could. For me, the telephone support group is a lifeline. I am so thankful to be able to part of such an uplifting group.”

A PHA telephone support group uses simple conference call technology for its calls; participants need only call the conference call number, enter a numeric code and then join the call.

It’s important to register each month as dial-in numbers may change and dates may change due to holidays. You can also sign up to receive email notifications of future calls.

PHA hosts regular telephone support calls for the following groups:

  • Patients – every fourth Thursday
  • Caregivers – every third Wednesday
  • CTEPH – every third Tuesday
  • Parents of children with PH – every second Wednesday
  • Bereaved family members – every second Thursday
  • Young adults ages 18-39 – every fourth Tuesday

Please email Support@PHAssociation.org with questions.