Women: Don't Expect High-Quality Health Care

Even at the Mayo Clinic Health Systems

Holding My Broken Heart (AI)

I haven't been feeling great lately, which led to quite a week. I had a sudden feeling like something with talons was trying to tear my chest open. The pain went up to my jaw, over to my left shoulder, and down my left arm, and I was sweaty and vomiting. My blood pressure (BP) was about 200/140. Now, I know what you're thinking, go to the damn ER! Well, a couple of months ago, I had highly similar heart-related symptoms, and I went to the ER, where I was made to wait over two hours in the lobby only to be told I could go home without the doctor wanting to do as little as recheck my BP or pulse rate.

I made a fuss and said I wanted scans and tests, to which the ER doctor said, "Yeah, we can do scans and tests on you while there is someone here who's actually having a heart attack, but okay." The completely condescending doctor only added CT Scans of my neck and head to the metabolic panel and blood count they did over an hour after my arrival, after which I was still left to wait in the ER lobby. Yeah, I totally got really sick a couple of days later, too. After waiting over two more hours, I finally got a room, and the doctor came in to see me. The doctor said nothing was wrong and prescribed two weeks' worth of diuretics for my BP. He refused the whole time to give me fluids or manage my pain. I also learned later that he lied to me about the results of my CT Scans by saying there were no changes when, in fact, there were significant changes. Over three hours after all this, the doctor transferred me to another doctor who let me go home with chest pains and crying after not even bothering to see me.

Back to the talons ripping open my chest, I was home alone with my daughter, who can't drive (and has borderline low-functioning autism), during a blizzard. I figured it wasn't worth the risk of driving only to be horribly treated, receive abhorrent health care, and have to pay another $8,000 to the hospital for insulting me and making me cry, yet again (there's been a pattern). Well, I ended up having a heart attack (with troponin levels of 1276) and another the following night (with troponin levels of 1007) while in the hospital after I finally went to a different ER and got admitted into the hospital. I can't help but wonder if this could have all been prevented if the first ED doctor had actually done the bare-bones basics of their job just two months earlier.

I gotta tell you something. I was doing pretty well, but when the nurse said I had to go in for an emergency surgery, she told me I might want to call my parents and my kids. I asked her if I was dying, and she just said, "I think you should make some calls quickly." That fucking broke me. What happened was that my congenital fibromuscular dysplasia (FMD) caused a spontaneous coronary artery dissection (SCAD). The artery completely closed off twice, causing each heart attack, and is too twisted at this point to fix with a stent (because they didn't believe me for over three years, including my last stint in the ED, but I digress). The emergency surgery ended up being a procedure with no intervention because while the artery is currently 60% blocked, it's due to the extreme tortuosity (twisting), so nothing could be done.

FMD is a rare vascular disease I've had from birth but didn't know about until I almost died from it about four years ago (and after a hysterectomy, near-total colectomy, cholecystectomy, miscarriages, and decades of various other surgeries). The FMD causes the muscles in my peripheral arteries (i.e., carotid, renal, mesenteric) to narrow, bulge, tear, and twist, which has resulted in randomly uncontrollably high blood pressure, a myriad of heart-related problems, two current aneurysms, almost daily migraines, and arteries closing off completely (which also happened to my left vertebral artery--it took my dumb ass a week to go to the doctor because I only thought I was having the worst migraine of my life). I've had my renal artery plumped up three times, I have an intracranial aneurysm on my internal right carotid artery and one on my upper aortic artery, and the FMD is now twisting both internal carotid arteries. And now I've had at least five heart attacks within 48 hours (yeah, I had at least three more the next day) due to a twisty coronary artery causing SCAD, to which I always get the same response: watch and wait. It's actually rather fascinating (if you ignore the fear of dying at any moment)!

Anyway, I quit vomiting once or twice an hour late Friday night after having at least three more heart attacks (troponin levels were only 500+, so that was an improvement), which made me quite happy. And I could keep down a veggie omelet on Saturday and woke up starving on Sunday, which was fantastic! They took me off "strict bed rest" on Monday, which meant I could have visitors (even though I did a good job convincing them to give me fewer restrictions right away, including having visitors, shhh). They finally let me go home Tuesday night, for which I am so grateful, and they said absolutely no News or anything stressful. (Yeah, right. Nothing stressful?!) As for now, it's a wait-and-see situation, as usual, with the subpar medical treatment I've received from the Mayo Clinic. While I've had some good doctors and tons of great nurses, the ones who are higher on the totem pole and make the decisions have been, by and large, utterly horrible. I'm on a bunch of medications and am supposed to be scheduled to see a cardiologist and start cardio rehab within the next couple of weeks. I can't help but be scared that the dissection could cause another heart attack at any time.

Today, I'm ecstatic to be home with my kids, lounge with my animals, walk around my house a little throughout the day, and sleep in my bed without constant beeping. They said numerous times in the hospital that they had never had a case like mine and that I was lucky to be alive, which isn't the first time I've heard this during a hospital stay, making finding my joy this week pretty damn easy! At the same time, I can't help but worry that I could die at any moment, in part due to the inferior medical care and a poverty of concern from the Mayo Clinic that has helped to put my family in debt and made a second mortgage necessary. How many more times will my pain and objective symptoms be dismissed? I mean, seriously, I've been complaining about my heart for over three years. At first, the doctors would say I was too young and healthy to have any serious health issues, and now, at 48, they say it's because I'm old and overweight. Assholes. They didn't even discover I've had genetic widespread osteoarthritis since adolescence until my late 30s, when I complained enough about my chronic pain to a doctor that they finally took an X-ray to prove me wrong and found, among other things, that my spine had bent and twisted because of it.

I guess that's enough complaining for one day; I merely hope I get many more, that these aren't my final, pathetic words. I've told my kids I'll live to at least 120, and I intend to keep my word. For anyone reading this, always advocate for your health and the health of every woman in your life! Unfortunately, in the state of the healthcare system, even going to the Mayo Clinic doesn't guarantee a damn thing. I would get into the fact that I'm part Native, and doctors have (erroneously) told me on numerous occasions that having this in my chart is vital, but that's for another time, assuming I have some. On the bright side, now I get to tell my kids that a mere mortal could not have had five heart attacks within 48 hours and lived. And whenever they get on my nerves, I can grab my chest and say, "Oh, my heart... "