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 learn more. I have made a lot of PHriends who seem more like family, and our holiday parties are becoming an institution that everyone looks forward to,” says Bill.
Bill is inspired to lead the support group meetings because he feels like his story was like so many other PH patient stories, where the diagnosis is not determined right away. He states, “After it took nearly two years to be diagnosed with pulmonary hypertension (PH) and not knowing what PH was, I went online to look for answers. Thankfully, I found the PHA site and registered as a new patient. I soon received new patient resources and eagerly read through everything to learn about my condition.”
Bill went to his first local area support group meeting in Lincoln, Neb., where he listened to speaker, Mary Knabe, R.N., discuss PH and its causes. Mary described chronic thromboembolic pulmonary hypertension (CTEPH), which Bill believed he had, and explained there was a specialized surgery available as a possible treatment for clearing blood clots from the lungs. Bill and his daughter began to ask a lot of questions.
“After hearing about a PH clinic in Omaha, I made an appointment. After they looked over my records and a couple of tests, they said they wanted to send me to San Diego for the PTE surgery to remove the blood clots from my lungs. The surgery, on Aug. 18, 2016, was successful, and I have returned to normal health,” says Bill.
After returning home, Bill attended the next PH support group meeting, and everyone was so happy about his results. He felt bad that he was doing so well, because everyone else was still dealing with their PH daily. “They told me not to feel that way since they saw me as a source of hope that they could hold on to,” says Bill.
Several meetings went by, and it was apparent the support group leader was struggling to hold meetings due to worsening health. Bill volunteered to take over and help her out.
“I felt I needed to keep the support group active in Omaha since they were the ones who basically saved my life. If I had never registered as a new patient on the PHA site and then received the postcard invitation to the support group meeting, I would never have heard of the possible cure for my PH.”