‘I want to share my experience with people who have CTEPH and blood clots and raise awareness so others don’t suffer and go through what I did.’

Angela Donovan, 54, began experiencing shortness of breath in 2019. After she moved to Florida from Ohio for a new career as a health care executive, her symptoms worsened. A routine site visit to an urgent care clinic for work led to her chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis. Today, she is a senior vice president of a health care company that owns and operates physician practices that serve Medicare Advantage patients. She lives in the West Palm Beach area with her husband, two dogs and three cats.

By Angela M. Donovan

While visiting an urgent care clinic that I oversaw in my previous job, the doctor on duty asked to examine me. She was concerned by the sound of my breathing as I walked past her. She prescribed steroids, oxygen and a breathing treatment.

She suggested I go to the hospital for further evaluation, but I didn’t think I really needed to. I attibuted my the breathing issues to a recent asthma diagnosis and the move to a new climate and environment.

I scheduled an appointment with an allergist to continue the allergy and asthma care I had been receiving, but couldn’t get an appointment until three months later. But after a weekend when my symptoms worsened, I found and saw a primary care nurse practitioner.

The nurse practitioner said she didn’t think I had symptoms related to asthma and that I never had asthma. She believed I had a heart condition and performed an EKG. Afterward, she said the EKG results were really bad and explained that blood was pumping in the opposite direction that it should have been.

I immediately went to the emergency room for additional tests. The ER doctor said there was no indication that my heart wasn’t functioning correctly, but I had multiple bi-lateral pulmonary embolisms. I was admitted immediately.

After I was released, I was under the care of a hematologist and a pulmonologist. The pulmonologist diagnosed me with pulmonary embolism and high blood pressure. I was surprised by the high blood pressure because my previous blood pressure readings had been low. Although I continued a course of aggressive treatment and worked out regularly, my condition and symptoms never improved.

My pulmonologist, Luis Hernandez-Pena, M.D., determined that my condition was more critical than originally thought and ordered more tests. He then diagnosed CTEPH. I learned the reason why my blood was pumping in the wrong direction: it was hitting the clots and scar tissue, which forced it back into my heart instead of flowing through.

Dr. Hernandez-Pena referred me to Frank Rahaghi, M.D., a pulmonologist who specialized in CTEPH. Fortunately, he determined that I was a solid candidate for pulmonary thromboendarterectomy surgery.

In December 2020, I underwent PTE surgery at the Cleveland Clinic in Ohio and made a full recovery. The surgeons removed 9 grams of clots and scar tissue from my lungs. After surgery, I was off oxygen, doing “laps” at the hospital and no longer taking the medication I had been on prior to surgery, except coumadin.

Today, just over a year later, I have no residual effects from my condition and can live a normal life, breathing easily.

Had that nurse practitioner not done the EKG that indicated a serious condition, I wouldn’t have gone to the ER. More than likely, I wouldn’t be here today.

I want to share my experience with people who have CTEPH and blood clots and raise awareness so others don’t suffer and go through what I did. Maybe, a life can be saved if they look toward this diagnosis and obtain the care needed earlier on in their journeys.

Angela shares her story with the Pulmonary Hypertension Association (PHA) as part of Blood Clot Awareness Month. If your PH patient is related to blood clots, submit your story to PHA’s Right Heart Blog. Read more first-person stories from people with PH, caregivers, families and friends.

Looking for more information about CTEPH or support? Join the Pulmonary Hypertension Association 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.

Angela Donovan