a mature woman being cared for blood pressure by her medical team

My PH Diagnosis Story

My pulmonary hypertension (PH) diagnosis was delivered to me as I lay in an ICU bed recovering from a pulmonary embolism, or PE (blood clot in the lung), just days after a category 4 hurricane destroyed my house. I couldn’t tell you what was said or how it was described. I just remember being in a state of total shock!

I didn't know how severe it was

The doctors just kept going on and on about what type of testing would be needed. I had to stop them and say, "I’m sorry, what? My heart is involved?" I really had no concept of how severe my symptoms were or how my future was about to change.

At the time, I was a bit distracted caring for my micro-preemie daughter who was recovering in the NICU from pacemaker surgery just days before.

Doctors suspected CTEPH

About 6 months later, I found myself consulting with specialists at UCSD in San Diego, California. Due to my history of blood clots, it was believed I had a form of pulmonary hypertension known as CTEPH — chronic thromboembolic pulmonary hypertension.

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There is a lifesaving treatment for this type of PH, which is an extensive open heart surgery to remove old blood clots from the lungs.1

I had a series of tests done at UCSD, and I was in recovery waiting for the results of my right heart cath — a right heart catheterization. This is an invasive procedure where they measure blood pressure and oxygen in your lungs and the right side of your heart.2

The doctor finally came in and told me that I was no longer eligible for the much-anticipated surgery because I was in heart failure and, simply put, would not survive if they followed through.

A glimpse of hope extinguished

At that moment, my whole world came crashing down again, now for a second time. The first time was just 2 months prior when my daughter passed away at 8 months old from her own complications with pulmonary hypertension. This surgery was the only glimpse of hope I had to look forward to, and it had just been extinguished.

I stayed overnight, lost over a liter of fluid thanks to IV diuretics, and tried to figure out how I could possibly pick myself back up from this.

Increased difficulty with daily activities

During this visit, I found out that the shortness of breath and chest pain I started to complain about in 2019 were actually the first signs of pulmonary hypertension that went undiagnosed for 3 years.

After this trip, I was officially diagnosed with pulmonary arterial hypertension (PAH) secondary to Sjögren’s syndrome. I had had Sjögren’s for years, and I had no idea pulmonary hypertension even existed. I had complained about these symptoms for years and found myself having increased difficulty performing routine activities on a daily basis. Those activities looked like talking for a prolonged period, walking up stairs to my front door, and demonstrating exercises to my physical therapy patients — really nothing outlandish here.

I didn't think I would have a rare, life-threatening disease

I had every test in the book — echo, stress echo, pulmonary function test, exercise test, CT scans, and endless labs. I had every test except for the gold standard diagnostic test for pulmonary hypertension: the right heart catheterization. All results led to something wrong in my lungs, but no diagnosis was ever found.

At the time, I was too busy to be sick. I acted upon my evolving symptoms, but doctors told me I was fine, so I didn’t question it further. I have an autoimmune disease that brought me unusual symptoms from time to time, and that was the given answer. Not once did I think I would have a rare, life-threatening disease.

My shortness of breath was most prominent, followed closely by my unnerving chest pain. These symptoms continued to wax and wane for years until I found myself in an ICU bed, recovering from a PE and getting the diagnosis of pulmonary hypertension.

Have you been diagnosed with pulmonary hypertension? What symptoms led to your diagnosis? Share an experience with us in the comments below.

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