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,
By Colleen Schnell Colleen Schnell I was born in Niagara Falls, N.Y., in September 1975. When I was 9 months old, I was diagnosed with a complex congenital heart defect. By that time, I had already developed pulmonary arterial hypertension. I was always the sick kid, the one who couldn’t do much because
By Karen Fragale I live in Johnston, Iowa, which is just outside of Des Moines. I have two children, Christopher, 31, and Stephanie, 28. Christopher, who works in finance, is engaged and planning a wedding date in October. Stephanie, an accountant, lives with me and is my primary caregiver (cleaning/groceries/shopping). She has a 2-year-old
Estella Medina is a Pulmonary Hypertension Association (PHA) support group leader from El Paso, Texas. She shares her pulmonary hypertension (PH) journey from diagnosis to volunteerism. By Estella Medina I was a medical assistant until I had my first child in July 2000. Since then, I’ve been a stay-at-home mom. I have two children
Tara Suplicki decided to start volunteering when she learned she had pulmonary hypertension (PH). Today, she leads the Morristown, New Jersey, Pulmonary Hypertension Association (PHA) support group with Patrick Mellin. Tara describes how she got involved: “I was in the hospital with a stroke and this illness. My mother said, ‘You can either go
When Jeri Nudell was at the Pulmonary Hypertension Association’s (PHA’s) International PH Conference and Scientific Sessions in Orlando in 2018, she met an inspiring fellow attendee. In their long conversation, Charlotte Gilbert told Jeri that she was no longer blogging because her PH had progressed too much. Jeri shared that she had never been
The New Year is often a time for making resolutions that lead to a better quality of life. With that idea in mind, we asked our Pulmonary Hypertension Association (PHA) support group leaders to share some of their best tips for living well with pulmonary hypertension (PH). We hope that each one of
Bill Kolm, Pulmonary Hypertension Association (PHA) support group leader of the Omaha Area Support Group in Nebraska, has been leading the group for nearly two-and-a-half years. “I have seen so many new patient attendees leave the meetings with a smile and telling me they will return for the next meeting because they want to
A regional support group leader training held in Silver Spring, Maryland, last month reminded Laura Camponeschi why she volunteers as a support group leader. “This was really helpful, inspiring and refreshing,” Laura said. PHA support groups are coordinated by leaders committed to planning and running meetings for individuals with pulmonary hypertension (PH) and their
This article originally appeared in the June issue of Pathlight. Jackie Woosley is a Pulmonary Hypertension Association (PHA) support group leader who also facilitates the monthly PHA Bereavement Telephone Support Group. She was the caregiver for her adult daughter Karen, who passed away in 2016, and has taken on multiple volunteer roles with PHA to carry
