At the beginning of this month I was rear-ended by a work truck and suffered from a second concussion in under 30 days. That made it more serious than it had a right to be and was complicated by my heart condition. It left me with an ostensibly untreatable migraine for a week and a half, wherein I walked around my house with blinds drawn and sunglasses on.
I'm certain my cat thought I looked super cool.
Migraine aside, the hardest part of being sick and having to go to the Emergency Department is the fact that, no matter how I'm feeling, I need to ensure that no doctors or nurses kill me unintentionally.
There is a long, ever-changing list of drugs that are contraindicated for Long QT. Many of these are things that are available over-the-counter and, therefore, deemed "universally safe" in the minds of many medical professionals. I know better than most that they are dealing with a ridiculous amount of information and I deeply respect the work they do.
But I'm still tired of so many of them nearly killing me.
Flash back to a couple years ago when I was in a doctor's office and the PA tried to give me not one, but two medications that were on the not to take list--including one that I had previously taken and my cardiologist believed had sent me into a fatal arrhythmia.
Now, imagine you're lying there on a stretcher in the hallway, unable to move your head because you're stuck in the cone of shame until your scans can take place and opening your eyes is proving to be incredibly painful. The nurse comes over after probably three or four hours and says they're going to give you something to make you feel better. You, knowing how this can go and stopping them before they reach for your IV, inquire as to what precisely you will be given. Tylenol and Benadryl, they say calmly. You tell them you're pretty sure you're not supposed to have antihistamines. The nurse leaves to come back hours later, saying the doctor said it was fine. You assume it's simply that you remembered incorrectly--you are concussed, after all. So you let them give you the medication, and lie there for another hour, staring at the ceiling and feeling wonky. When the doctor finally comes back, you inquire about the antihistamine situation and they say, "well your QT interval was fine on your EKG." And that's when you desperately try not to panic as you pull together your scrambled mind and explain that's not how your heart disease works.
My best friend and writing partner was recently diagnosed with a heart disease and she specifically asked what advice I could give her about going to the doctor with a non-standard diagnosis. I remember telling her then--and I would tell anyone else in the same situation--you have to be your own advocate because the medical field will fail you and people will unintentionally try to kill you. I am not blaming anyone. There are numerous redundancies in place and I believe people in the medical field truly care. But the horrifying truth is, it happens to me and others with rare diseases, time and again. We must constantly be on guard to protect ourselves from misunderstandings, lack of information, or failsafes not functioning properly.
This though, is a heavy burden on those with rare diseases. Because in the end, I have to protect myself, no matter what.
Even while disoriented, hurt, or concussed.
