30 Days of PH: My Long and Terrifying Journey to Diagnosis

For Lindsay Moretz, it was a long struggle to finally reach an accurate diagnosis. (Photo courtesy of Lindsay Moretz)

Day 7 of 30

This is Lindsay Moretz’s story:

I could write a book about the period of my life from my pulmonary hypertension (PH) diagnosis to where I’m at now.

I was diagnosed in 2019 by a cardiologist who made it seem like PH was no big deal. I think we can all agree that PH doesn’t just get better when we’re put on vasodilators and sent on our way.

I first saw this cardiologist because I suffered from two deep vein thromboses in my left leg and three pulmonary embolisms in my lungs, and I couldn’t get rid of the residual shortness of breath. Thankfully, I found a specialist in Orlando, Florida, who gave me hope for feeling better.

I was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) with pulmonary embolisms still observed in my lungs. Multiple tests were performed to make sure this is exactly what I had. All of the tests pointed to CTEPH, so a pulmonary thromboendarterectomy would save my life. I couldn’t wait to feel better and actually be cured from this horrid disease, which not many get to say after being diagnosed.

Except, needless to say, the blood clots were not causing my PH. As soon as my surgeon removed the clots, there should have been an automatic relief of pressure in my pulmonary artery. But it did the complete opposite.

Then I suffered from pulmonary edema and kidney failure and was place on extracorporeal membrane oxygenation, or ECMO, in order to save my life. I fought multiple infections as I lay in a coma for approximately seven weeks after surgery.

These are minute details that I’m sharing with you, as I spent almost nine months in and out of the hospital — all because my body had PH before I suffered from the blood clots in my lungs. I was finally diagnosed with idiopathic pulmonary arterial hypertension.

I fought so hard to be here today, with aggressive physical therapy, support from my friends and family, and most importantly, the work of my medical team. I’m proud to say that I’m now working full time as a physical therapy assistant, I feel amazing, and I’m almost completely off the medication Orenitram (treprostinil) — and I thought I’d never get off IV Remodulin (treprostinil) in the first place.

It’s definitely been a battle, but I’m beyond blessed to be here and share my story, and hopefully, to help others as well!

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.