I had to learn about SCAD by Googling it

A year ago, I had all the typical signs of a heart attack, but there seemed to be this uncertainty. The doctor doing my angiogram said that based on what I was telling him and what he was seeing, my heart attack was likely caused by spontaneous coronary artery dissection (SCAD). He didn’t tell me much about it, just that SCAD wasn’t common. My cardiologist on the ward didn’t seem that familiar with SCAD. Before I had the angiogram, when my doctors assumed I had had a traditional heart attack, they gave me a package about cardiac rehab. Afterward they took the package back and said, “That’s not you. You can’t go to cardiac rehab.” They said I needed to talk to a cardiologist who specialized in SCAD. Unfortunately, it took about 6 weeks to get an appointment. There was nothing else; no directions, just “Take it easy.” In the meantime, I had to learn about SCAD by Googling it.

The first thing I read was that the mortality rate is 70%. That was pretty scary! I did find some good things on the Internet, too. For example, the SCAD Alliance (https://scadalliance.org/) and the University of British Columbia (https://scad.ubc.ca/) have good information. I used to exercise regularly for health and social benefits, so I was worried that I’d never be able to do that again, but I found a webinar that said cardiac rehab could help, which I found reassuring.

Because of COVID-19, my first meeting with the SCAD specialist was on Zoom. She gave me reassurance that it wasn’t as bad as I had read. That the mortality rate was more like 10%. That I would be able to get back to a lot of activities. She was supportive of cardiac rehab, which gave me confidence that I could do things again. One of the other things she said was that because I knew what a heart attack felt like, I’d know if I had one again. That helped, because I worried I was having another attack every time I felt something in my chest.

I wish I didn’t think about SCAD that much but I’m sure I think of it every day. I was not a person who worried about things, but once this happened, I did worry about my health. Cardiac rehab helped to reduce this anxiety and give me confidence that I could get back to some of my regular activities. Also, I found the psychosocial aspects of rehab helpful. I was a good sleeper, but my heart attack happened in the middle of night, so for a while I was nervous going to sleep. The techniques for sleep and relaxation really helped.

There seems to be little good information about SCAD. I think having professional information to give to patients early on would be a big help. You need reassurance that you’re not totally on your own to figure this out. Recently, I provided feedback on the development of the Sunnybrook Health Sciences Centre’s Spontaneous Coronary Artery Dissection Patient Guide (https://sunnybrook.ca/SCAD/guide). — Geraldine James, patient

In Their Own Words provide extracts of interviews held between CMAJ staff and patients, families or clinicians. They are usually linked to an article appearing in the Practice section and are intended to provide complementary perspectives.

See related article at www.cmaj.ca/lookup/doi/10.1503/cmaj.212009