So I’m thinking about changing medical facilities. Perhaps not completely, as a few of the docs and stuff at the place I’m going are okay, but I’ve already had to change for my endocrinology, and I have a rheumatologist that is with the same group as the endo, and neither of them treat at the hospital in Galveston I was going to. Now, my primary care doctor is leaving for another facility too, and that puts me back to having residents are my primary care doctor. Well, that’s fine for someone with no illnesses, but when you have a chart as extensive as mine, it’s really hard to ALWAYS see a new doctor every time you go in, and that’s what happens when I don’t have an attending supervisor as my doctor with a teaching facility.

So I had been looking at changing to a new facility that wasn’t so focused on teaching, so I could get a primary care doctor I could stick with, one who knows my chart and can stay with me throughout the course, instead of feeling like I’m starting over again every six months to a year, when the new rotation starts for the interns and residents.

When I found out my primary care doc was leaving, it really cinched the deal for me to go elsewhere, and if she will have me, I will likely be following her to the new location she will be working at. If not, I’m on the look out for another primary care doc to oversee my care and coordinate care amongst all the specialists.

This will cause me to need to move to another hospital, should I need to be admitted or go into the ER. And since I regularly have to go to the ER, because of the nature of the CTEPH and heart failure, then I need an ER that I feel comfortable with, where I know what to expect, AND where they know my history. CTEPH is so rare that most docs have never met someone with it. It has to be treated differently than most conditions–such as NOT giving fluids when blood pressure drops, because that can cause a CTEPH person to die! So the docs HAVE to know my chart and know my history and have it on file, which is why we felt so STUCK at the hospital in Galveston because they ‘knew’ me there and none of the other local hospitals do.

So we’ve decided we need to get my records and get them transferred to another hospital, where my primary care doc can practice and where they will have me on record in the event I do have an emergency.

In going through my records, I learned something… apparently, in 2011, when I was admitted to the hospital for the massive PEs, I also had a myocardial infarction… and no one ever told me about it. It was never mentioned. It wasn’t a matter of me being too sick and I missed it or anything. I have Lynn with me the entire time, along with other people intermittently, and no one, not one of us, ever heard them tell us I had had an MI. And in the three years since, no one has mentioned it. They mentioned heart failure, and said it was being caused by the CTEPH and the clots having gone through the lungs, NOT from the typical reasons for heart failure (which makes treating it really hard), but no one ever told me I essentially had a heart attack.

Sure, it was probably a mild one, considering I didn’t even know it had happened, but still… how can they not tell me something that seems so important to me?

When I saw the outside cardiologist, they asked on my forms if I’d ever had a heart attack, and I said no… because I thought I hadn’t.

Now, it seems I have.

A heart attack, at 40 years of age. Crazy.

And it wasn’t because I ate poorly. It wasn’t because I wasn’t active or didn’t exercise enough. It wasn’t because I had high cholesterol (mine was perfect). I didn’t have diabetes. I didn’t really have any of the risk factors for heart disease, other than being a bit overweight, but I had a heart attack anyway… because some stupid blood clotting disorder, I never knew I had, three some massive blood clots through my heart and stopped things up and stretched heart valves and lodged themselves in my pulmonary artery and let the pressure from that slowly ruin my heart.

I’ve managed in the three years since to get my heart back to normal size with a normal sinus rhythm, and I think my doctors have been amazed I’ve done that.

But no one ever told me I’d had an MI.

Maybe my decision to change doctors and facilities is a good one, and this just seems to confirm that for me.

But then, this morning….

At 4am, I sit bold upright in bed, gasping as a pain hits my breast bone, right under my left breast, shoots down my left arm and then back up into my jaw. I’ve been feeling a dull ache in my chest and a weakness in my arm ever since. Sigh. Guess where I’m going later today. About to get into the shower. I’ll keep ya’ll posted.

Yeah, I know most people would be freaking out about now. With CTEPH, chest pains like this are so common, I don’t freak like I used to. But still, right after reading about having had an MI, it’s makes this all more unnerving than it was before.

Anxiety sucks.

Being sick sort of sucks too.

Wish me luck.

Love and stuff,

Michy