{"id":532,"date":"2014-11-06T22:24:07","date_gmt":"2014-11-06T22:24:07","guid":{"rendered":"http:\/\/michelledevon.com\/?p=532"},"modified":"2021-01-02T22:40:06","modified_gmt":"2021-01-02T22:40:06","slug":"medical-records-reveal","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2014\/11\/06\/medical-records-reveal\/","title":{"rendered":"Medical Records Reveal"},"content":{"rendered":"

So I\u2019m thinking about changing medical facilities. Perhaps not completely, as a few of the docs and stuff at the place I\u2019m going are okay, but I\u2019ve 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\u2019s fine for someone with no illnesses, but when you have a chart as extensive as mine,\u00a0\"puzzle-heart-1440815-1-m\"<\/a>it\u2019s really hard to ALWAYS see a new doctor every time you go in, and that\u2019s what happens when I don\u2019t have an attending supervisor as my doctor with a teaching facility.<\/p>\n

So I had been looking at changing to a new facility that wasn\u2019t 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\u2019m starting over again every six months to a year, when the new rotation starts for the interns and residents.<\/p>\n

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\u2019m on the look out for another primary care doc to oversee my care and coordinate care amongst all the specialists.<\/span><\/p>\n

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\u2013such 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 \u2018knew\u2019 me there and none of the other local hospitals do.<\/p>\n

So we\u2019ve 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.<\/p>\n

In going through my records, I learned something\u2026 apparently, in 2011, when I was admitted to the hospital for the massive PEs, I also had a myocardial infarction\u2026 and no one ever told me about it. It was never mentioned. It wasn\u2019t 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.<\/p>\n

Sure, it was probably a mild one, considering I didn\u2019t even know it had happened, but still\u2026 how can they not tell me something that seems so important to me?<\/p>\n

When I saw the outside cardiologist, they asked on my forms if I\u2019d ever had a heart attack, and I said no\u2026 because I thought I hadn\u2019t.<\/p>\n

Now, it seems I have.<\/p>\n

A heart attack, at 40 years of age. Crazy.<\/p>\n

And it wasn\u2019t because I ate poorly. It wasn\u2019t because I wasn\u2019t active or didn\u2019t exercise enough. It wasn\u2019t because I had high cholesterol (mine was perfect). I didn\u2019t have diabetes. I didn\u2019t really have any of the risk factors for heart disease, other than being a bit overweight, but I had a heart attack anyway\u2026 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.<\/p>\n

I\u2019ve 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\u2019ve done that.<\/p>\n

But no one ever told me I\u2019d had an MI.<\/p>\n

Maybe my decision to change doctors and facilities is a good one, and this just seems to confirm that for me.<\/p>\n

But then, this morning\u2026.<\/p>\n

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\u2019ve been feeling a dull ache in my chest and a weakness in my arm ever since. Sigh. Guess where I\u2019m going later today. About to get into the shower. I\u2019ll keep ya\u2019ll posted.<\/p>\n

Yeah, I know most people would be freaking out about now. With CTEPH, chest pains like this are so common, I don\u2019t freak like I used to. But still, right after reading about having had an MI, it\u2019s makes this all more unnerving than it was before.<\/p>\n

Anxiety sucks.<\/p>\n

Being sick sort of sucks too.<\/p>\n

Wish me luck.<\/p>\n

Love and stuff,<\/p>\n

Michy<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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