From Clots to Clarity: My Journey with CTEPH

In April 2016, I found a lump on my leg, and like most adults, I ignored it for a couple of weeks. After seeing doctors, I did 6 weeks of oral antibiotics, 6 days of IV antibiotics, and 2 biopsies. They decided I needed to see a dermatologist.

By the time I saw a dermatologist, the lump was gone, but he had an idea of what might have caused it, so he sent me for a chest X-ray. The X-ray showed an enlarged pulmonary trunk, and he sent me to a Cardiologist.

The Cardiologist ordered me a stress test, and my heart did fine on the treadmill, but my oxygen dropped significantly. The Cardiologist sent me for a VQ scan to look for blood clots, and they found multiple clots in my lungs, and I was sent to a pulmonologist.

The pulmonologist suspected Pulmonary Hypertension, so he booked me for a right heart cath, which confirmed PH. After 16 months of unsuccessful treatments during my 3rd right heart cath, the doctor performed a pulmonary angiogram and confirmed a diagnosis of Chronic Thromboembolic Pulmonary Hypertension (CTEPH), which means the clots in my lungs have caused my PH.

CTEPH is the only form of PH that is curable!! That sounded exciting, so to try for a cure, I was booked for Pulmonary Thromboendarterectomy Surgery (PTE), but I live in Alberta, and the only places where the surgery is performed are in Ontario.

On October 4, 2019, my husband, Dean, and I boarded a plane, and my surgery was on October 7th at 7 a.m. The surgery takes 7–8 hours, which made for a very long day for Dean. I was in the hospital for 9 days and then flew back home.

After a couple of complications, I started feeling really good and was off all my PH medications, and in the spring, I was able to work and go for a 4 km walk in the evening. By that fall, I started to feel short of breath again, and after another right heart cath, my pressures were higher than they were when I was first diagnosed.

I restarted my Adempas—it improved my breathing, but still not back to where I was. On August 20, 2021, 4 years and 10 days after diagnosis, I started on oxygen, and then in December 2021, we added Opsumit.

The other benefit of being on oxygen was that my disease was no longer invisible. I got a lot of questions about why I was on oxygen, which allowed me to introduce and educate people about PH and CTEPH.