Uphill Journeys Founder Jeannette Morrill was inspired to start this organization, and continue her advocacy and fundraising work under its umbrella, by her first meeting with a newly diagnosed patient at Maine Medical Center in 2010. A long-time PH/PAH advocate with the Pulmonary Hypertension Association (PHA), Jeannette realized she could also raise awareness of symptoms, diagnosis protocols, treatments and community building right in her own backyard. Jeannette shared her memories of this epiphany on the PHA website. 10% of all donations to Uphill Journeys support the worldwide efforts of PHA.
Déjà vu
I woke up on October 9, 2010, and had to go straight back to bed. I just didn’t feel right. I was sweating, and had developed chest pain. My son, Ian, told me I was flushed and said, “We’re going to the hospital.” I was frustrated. I hadn’t been admitted to the hospital in more than 10 months. But I was scared, and I knew Ian was right.
The Emergency Room doctor felt I should go to a larger hospital, where physicians would know more about dealing with pulmonary hypertension and my treprostinil (Remodulin™) intravenous pump. I wanted to go to Maine Medical Center, several hours away in Portland, to see my PH specialist. The nurse agreed — and when my husband David arrived, he was adamant. So off I went.
I was seen by a cardiologist, who ordered a cardiac catheterization for Monday. I would be in the hospital over the weekend. Why was this happening to me now? I had support group and physician meetings and a trip to Rochester, N.Y., scheduled in just days. I did not have time to be sick! But I would soon find out why my life had taken this turn at just this time.
On Sunday, one of the nurses asked if I would see a young woman on the floor who had just been diagnosed with PH the day before. Even though my pain had become more intense, I told her absolutely. I could not even get up from bed, so I asked if she could come to me. And so I met Braden Buehler.
I saw myself in Braden — young, vibrant, full of life, a beautiful person. Seeing her troubled face, I remembered just how I had felt 35 years ago when I was first told I had PH and had only two years to live. Like me, Braden had become increasingly short of breath when doing simple tasks. She had just had her first baby. She told herself she needed to get back in shape, not work as hard, get more sleep. Then she fainted, was given an ECHO, and was sent straight to the hospital. I remembered making the same excuses, and how terrible it was at first to discover what was wrong.
Read the rest of the story at phassociation.org…
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