Patient story

"Then, we climbed a little higher to the top and I yelled out, “Thank you pulmonary rehab!"

- Susan Gould

Susan Gould

When a doctor gives you a diagnosis of an incurable disease, your life seems to stop at that point. You don’t know where to turn for help, guidance, and someone to listen to you. You think you are the only one and then you find out you are not.

I knew I had a long battle ahead of me, but I was willing to do anything to make it better. I asked my doctor if he could get me to pulmonary rehab. Now mind you, I thought this would be really easy, but it wasn’t. Doctor’s offices get so busy and sometimes they forget you. Well, I kept pushing and pushing (but nicely) and finally got it.

Susan Gould on the hiking trailRehab turned out to be a little harder than I thought. Around the beginning of June they asked me if I had some long term goals I wanted to achieve from therapy. Well, you know how you get these questions and think……. “hmmmm go ask the next person,” but I didn’t. I told them that I wanted to climb the side of a mountain to spread some of my brother’s ashes there. He always got a kick out of me talking to him about mountains while he was sick. When he passed I thought about him and doing this. The ladies at the pulmonary rehab were awesome. They worked with me and gently pushed me along.

Well, I want to tell you that this past October I climbed the side of that mountain, took my brother’s ashes and spread them around the glen we stopped at, truthfully crying when I did it. Then, we climbed a little higher to the top and I yelled out, “Thank you pulmonary rehab!” I know it wasn’t just the rehab, but it was me also. I worked very hard to get this done. While we were in North Carolina I was able to go up and see a beautiful waterfall also. It was a long climb but I did it. People on the way up were telling me that I was their hero. My hero was next to me carrying my tank up the steps because my helios backpack froze up…he is my hero.


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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.