Pulmonary Hypertension and Support Groups

by Bonnie Keller, Punta Gorda, Fla.

Bonnie KellerMy name is Bonnie Keller, and I am 59 years old. I live alone and, for a long time, did not know why I feel the way I do. In September 2009 I finally went to the doctor. He put me in the hospital and ran some tests, sent me home with oxygen and told me to visit his office again.

He gave me all the results. He told me I had pulmonary hypertension. I thought to myself, “No big deal. What is it, high blood pressure?” Since I have had high blood pressure for years, I asked him if we needed to change medication again. He told me, “No, you need to have a sleep apnea test.” By then my 15 minutes were up, and the nurse arranged for the test. I thought to myself, “All this for high blood pressure?”

I'm the kind of person who needs to take charge and go to the source. So I went to the library computer, researched and made numerous copies and went home to read. The first thing I read was: no cure, disease of the lungs, a disease not much was known about and five to seven years to live if untreated. Well, panic and hysterical crying set in. I thought, “What do I do? Where do I go? Oh my, oh my, I'm dying. I live alone with no one to turn to for help.”

That week in the Sunday paper I was reading the “Feeling Fit” section and saw a support group for PH right here in town. I called, and the next meeting was a couple of weeks away. It was one of the best and most important calls I have ever made. At the meeting, I was greeted by Linda Milo, the leader of the Port Charlotte Pulmonary Hypertension Support Group. A warm, friendly, active person, she made me feel instantly welcome. I was given a folder loaded with information, a pin, a bracelet and a business card. I was introduced to other PHers and realized I am not the only one with PH. I had something in common with all the other PHers at the meeting. The two other co-leaders, Mary Anne Jones and Teresa Wells, were also there for a helping hand.

I’ve been to many meetings now. Each meeting has a guest speaker with different topics of interest to PHers. I have gone to meetings totally depressed and in tears, only to leave all smiles and ready to face things again. I have learned so much about this disease — how to cope with it, different medications and good doctors — through the leadership of the group, the guest speakers and the other patients. One of my best decisions was going to a PH support group meeting.

Thank you, Linda Milo, Mary Anne Jones, Teresa Wells and thank you, God.

This article originally appeared in the Fall 2012 Pathlight

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.