During Missy Storm’s 42-year education career, she worked as a classroom teacher, assistant superintendent, educational consultant, evaluator and trainer. Now that she’s retired, she volunteers for the Pulmonary Hypertension Association (PHA) and the University of California-San Diego Medical Center, where she underwent a pulmonary thromboendarterectomy (PTE) in 2018. She and her husband Richard have four sons, a daughter, two daughters-in-law, 21 grandchildren and six great grandchildren. She lives in Tulsa, Oklahoma.

By Missy Storm

I was fortunate to have been accurately diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) quite quickly in fall 2017. But I learned that wasn’t the case for many others. I committed to do all I could to raise awareness of this disease and to encourage and support others on this journey.

I joined the PHA CTEPH Facebook group from the ICU after the PTE surgery to remove chronic blood clots in my lungs. I wish I had known about the group when I was diagnosed.

My pulmonary hypertension (PH) specialist, Mrudula Munagala, at Oklahoma Heart Institute, invited me to speak to medical professionals after my recovery. I shared the personal side of such a diagnosis, extreme surgery and recovery to a large ballroom of medical staff who were there to fulfill their continuing education requirements.

Numerous members of the audience afterward expressed that they had understood PH medically but had never heard about it on such a personal or emotional level. They said it would make a difference in how they approached their patients and family members from then on.

Last fall, I was privileged to work with PHA and Peter Hountras, M.D., on a PHA Live event “Ask the Expert: CTEPH” for CTEPH Awareness Day.

Rewarding work
I also serve as an ambassador for the UCDS PTE program. I often converse with people facing surgery who are fearful, overwhelmed and have numerous questions. One was a woman who had just received the pre-surgery packet of information, including a rather thick book about pulmonary hypertension, pulmonary arterial hypertension (PAH), CTEPH, PTE surgery and more. She was hesitant about surgery.

After I spent more than an hour answering her questions, she asked, “Guess what I am going to do tomorrow?” I responded, “Read that big book?” She answered, “No, I’m going to call UCSD and ask to get on the schedule as soon as possible!”

Since then, she has fully recovered and is doing well. We still correspond.

Providing support
With a lot of encouragement from PHA staff and volunteers, I became part of the amazing team of PHA CTEPH Facebook group moderators in January. I thoroughly enjoy working with the other moderators, as well as fellow facilitators of PHA’s monthly CTEPH telephone support group.

I’m inspired by my co-moderators who give so much of their time and attention to raise awareness and support and encourage others with PH. I’m inspired by every survivor who shares their story to encourage victims of this disease, especially those who remain kind, considerate and positive.

I’m also inspired by my care team at OHI. They have become dear friends in the three years since my surgery. I’m inspired by every care team supporting each patient, doing the research and seeking better ways to give us second chances. I’m inspired by every family member and friend, especially my own, who do everything possible to support our journeys.

Join PHA CTEPH Facebook group of more than 1,000 members. Ask questions, share advice and exchange inspiration. Join or register for an upcoming CTEPH telephone support group.

To volunteer with PHA, apply here.