Carrie 1 was able to access specialized tests as a participant in several research studies.

Transcript

And so I live in Quebec City, and it was – I traveled to Montreal for – actually I got involved in another research project. I was involved in three research projects. So I was involved in [name’s], I was involved in the rehab one, I was involved in Dr. [name], she did long COVID in the heart, and that’s where I got a heart MRI, and that’s where I got diagnosed with pericarditis. I’d had all the tests, the EKGs, and the ultrasounds and all the things and they all came back to normal, but I had knives in my heart, I knew that something was wrong with my heart. And so I managed to weasel my way into this research project in Montreal and got a heart MRI. And then I got diagnosed with pericarditis, that was July 2021. 

And getting diagnosed of pericarditis was really important, because it gave me access to Colchicine, which is a medication that reduces inflammation, and has significantly improved my long COVID in general. And Dr. [name] said in general, she’s also seen it in patients like – she’s keeping me on it for life probably, because it reduces inflammation in general in the body, which is one of the hypotheses along COVID is that it’s causing inflammation. So for me it hasn’t – I still have chronic pericarditis, it hasn’t gone away, but it’s gotten significantly better because of this research project. Then I also met, through Dr. [name], I managed to get diagnosed as well, at the same time with POTS, postural orthostatic tachycardia syndrome. 

I knew I had it from long COVID groups that I was involved in, which I’ll talk about, but I couldn’t get anybody to diagnose me. My family doctor never heard of POTS, she didn’t feel comfortable diagnosing me with it, she didn’t know what it was, and she wanted to refer me to cardiologists, but there’s a huge waitlist. But I managed because of the study, to get in and see Dr. [name] who was a cardiologist running the study. Her research team diagnosed – did the testing and then diagnosed me with POTS, using the NASA Lean test. So with the POTS, I got access to medications, I got access to Ivabradine for reducing my heart rate. Later just this summer, I got another medication through Dr. [name], which was Midodrine, which is a vasopressor and the two have been pretty life changing, including increasing salt and water intake and wearing compression clothing.

---

Go back