Oklahoma City In a recent meeting guest speaker Christina Benninger discussed moving forward after a pulmonary arterial hypertension diagnosis. Members of the group shared their post-diagnosis difficulties, such as explaining a disease most people have never heard of and finding reliable, accurate information on the internet. “We’ve all gained a lot from talking to other patients, both in person and connecting through social media,” says leader Nicole Fitzgerald. The group also talked about the excitement of learning about research that hopefully will lead to new treatments. “Anything I can do to drum up support is a great thing,” Nicole says.
Iowa City, Iowa The June 24 meeting marked the first time the group has met in person since fall 2019. “It was great to see people in person again,” leader Karen Fragale says, noting that it was a blessing to see and hug a patient with newish lungs who came to the meeting. Traci Stewart, MD, from University of Iowa Hospital discussed the basics of PH. “After 13 years with this disease, I’m still learning that most of us with Group 1 PAH are still very rare, and Group 2 PH associated with left heart disease is more common,” Karen says. “The doctors are really working towards early diagnosis. What great news!”
Black Hills, South Dakota In the most recent meeting, members shared how they were doing and issues they faced during the pandemic. They proposed more flexible meeting locations to accommodate member travel in their rural area. Suggestions for future meeting topics included how medication and delivery have changed over the years, travel challenges and emergency preparation. “In my area, we had some flash flooding, which affected people on oxygen,” says Rayetta Johnson. “It was a very nice meeting and it went very well.”
Rayetta Johnson (left).
The May 20th meeting at a restaurant was wonderful, says Mary Hale, who has led the group for five years. The speaker, John McConnell from Norton Pulmonary Specialists in Louisville, Kentucky, gave a Zoom presentation about the importance of connections because PH can be stressful and depressing. Dr. McConnell stressed the importance of leaning on each other and reaching out to one another, Mary says. “He was impressed with our group size and how exciting it is to have each other. It was so nice to see everyone at our meeting. We are stronger together.”