‘Joining a support group and now being a support group leader has helped me find my best new normal. What I have learned from the speakers and from the group members has helped me be successful in my endeavor to be as healthy as possible.’

Les Freeman, 56, is a co-leader of the Central Oregon PHA Support Group with his wife Michele. The Freemans live in Bend, Oregon, with their four dogs. Les and Michele have three children, Shannon, Christina and Ben, and three grandchildren Jacob, Adien and Stella. Les enjoys a full life of daily walks, weekend kayaking and woodworking.

By Les Freeman

I was diagnosed with pulmonary arterial hypertension (PAH) in 2013. At the time, most of the information online was negative and defeating, and I had begun to believe that I would be dead in a few years.

When I joined the Pulmonary Hypertension Association (PHA) in 2015, I found out about the newly formed support group in my area. At the meetings, the leader brought in speakers who helped educate me on pulmonary hypertension (PH) and how to successfully live with it.

It was wonderful to be introduced to a world full of hope that included new friends who eventually became my PH family.

During the meetings, I found out about PHA 2016 International PH Conference and Scientific Sessions in Dallas. The conference expanded my world. I met more people with PH, found out about new treatments and learned about drug trials. I began participating in several drug trials, knowing that my participation would help others with PH in the long run.

My wife Michele and I became leaders of the Central Oregon support group in 2017. Our group realized that we needed more than one leader in case of an emergency or the current leader couldn’t continue.

Becoming a support group leader has added meaning to my life. Before I was diagnosed with PAH, I was a teacher. Being a support group leader is much like preparing lessons for my classroom: I try to have a blend of education along with socialization with the group members.

Our group is family, and everyone cares. In 2020, one of our members lost everything she owned during a devasting fire in Oregon. She had just retired and moved into a new home when she was told to evacuate immediately, with no warning. It was heartwarming to see the PH community come together and help her during that time of need.

Before COVID-19, our support group meetings were the social events members looked forward to. During the COVID-19 restrictions, our group opted to go online. Our oldest member was 82 years young, and she got online with her iPad. Our group now covers all of Oregon, and people from Washington and California attend our meetings. We decided to continue online as there are no other active groups in Oregon.

Joining a support group and now being a support group leader has helped me find my best new normal. What I have learned from the speakers and from the group members has helped me be successful in my endeavor to be as healthy as possible. When I was first diagnosed, I was in stage three PAH. I could barely walk and felt like I was 30 years older than I was.

I am now stable with my PAH, and in the last study I was in, the researchers thought I was given the drug because I was doing so well. It surprised everyone when we found out that I was actually on the placebo. My changes in my attitude, diet and the addition of exercise have made me stronger and helped improve my health and my life.

I learned to adapt my attitude, diet and think positively from support groups. I wouldn’t be where I am now if I didn’t join a PHA support group in 2015.

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