I recently took a trip the ER with chest pain. My resting heart rate – lying down on the couch for two hours – averaged 110bpm, according to my Fitbit. When I started to have trouble catching my breath I called my cardiologist who advised me to go to the ER.
When I got there I was hooked up to an ECG machine, and asked my history.
My history is complicated. I was having trouble getting air. I felt lightheaded and dizzy. I was nauseous and clutching a sick bag.
Not the ideal conditions to explain my very long and complicated medical history. The doctor asked my GPs name and called his surgery to get a quick medical history. It was 10am, so that worked out. Had it been 11pm, not so much. My history wasn’t complete however. My most recent cardiovascular diagnosis – Coronary Microvascular Disease wasn’t included.
And so the ER doctor continued to treat me as an anxiety attack. My ECG looked Ok to her.
Slowly I managed to get my medical conditions out. Rheumatoid Arthritis, PCOS, Hashimotos, I mentioned microvascular disease several times, but they didn’t seem to get it. Once they decide you’re having an anxiety attack they just give you the ‘there-there, try to relax’ routine. I told two nurses and a doctor. Finally when the doctor asked my why I’d come to the ER today, I said my cardiologist told me to come. And she stopped and paid attention, asking why I had a cardiologist.
So then they took bloods. Those came back abnormal. So they sent me for a chest x-ray. That showed my heart was enlarged. They decided to keep me longer, and continued to take bloods at regular intervals to check my troponin, a cardiac marker that is elevated when a heart attack has occurred or there has been damage to the heart muscle.
Without my history they might have sent me home with just the normal ECG. If I hadn’t finally gotten through to them that I had several chronic diseases that elevate my cardiovascular risk (Rheumatoid Arthritis and PCOS) and required a more thorough work up.
The ER doctor suggested that I carry with me a letter listing all my diagnoses and my medications. Such a simple, obvious thing to do, that to be honest I had thought of many times, but never got around to doing.
I also need a medic alert bracelet, with ‘Steroid Dependent’ and ‘Blood Thinners’ on there at least. Those two items alone would tip off emergency first responders that I am a complicated case. The doctor told me if I were unconscious, they would look in my wallet. Not sure if all doctors would do this, but I think a medic alert bracelet would tip them off, and then they would check my wallet.
If I were in an accident it would be imperative that I be given extra steroids, because my body doesn’t produce cortisol on its own. I would likely go into adrenal crisis, and it would also be likely that the doctors wouldn’t recognize it for what it was. Whenever the body is under stress, surgery, an accident, someone with adrenal insufficiency requires more steroids for their body to keep functioning. Without additional steroids, the Adrenal crisis is potentially fatal.
Ironically it was about then that I remembered that my iPhone has all my medical details listed, in the ‘Health’ app. All my diagnoses, all my medications. I should have just handed that over. But I forgot. Stupid.
But that’s the thing. When you’re in the ER, you’re generally very sick. You can’t think straight because you’re in pain, or you can’t breathe, or maybe you’re even unconscious.
The doctor told me that at this time emergency staff don’t look for phones either. A medic alert bracelet, one that LOOKS like a medic alert bracelet, and a letter or laminated card in my wallet are a much better idea.
Maybe some doctors look at phones. I think having that info at hand is still a good idea. If I were more lucid I could have just handed my phone with the relevant screen to them, knowing all the information is there and current.
But now that things have calmed down, I am writing that piece of paper up. There’s a lot there, but in a very small font I should be able to print it and laminate it and have a double-sided card in a prominent place in my wallet for emergency responders to check.
And later this week when I see my GP I will be checking with him that my records are up to date. And ensuring that their list of my current medications and diagnoses IS up to date. Accurate records and critical information could mean the difference between life and death in an emergency.
I had a hard time communicating and I was there on my own. Even when my friends arrived later, they don’t know my medical history. No one but me knows that.
So that’s today’s job. My current list looks like this:
Mixed Connective Tissue Disease
TIAs / Mini stroke
Small Vessel disease of the Brain
Steroid Dependent / Secondary Adrenal Insufficiency
Polycystic Ovarian Syndrome
Coronary Microvascular Disease / Angina
Prednisone – long term, 15mg daily
Aspirin – 100mg daily
Metformin – 3000mg daily
Plaquenil – 400mg daily
Thyroid replacement hormone – porcine extract/armour thyroid
Targin 10mg morning, 20mg night
Oxynorm 10mg 3-4 times daily for breakthrough
Seafood – anaphalaxis
I highly recommend you put it on your ‘to do’ list as well.
In the diabetes community, we are especially sensitive to the issue of medications. Many of us are now carrying special medical ID’s that have a toll-free number that directs caregivers to call to receive a full medical report. They have to establish credentials but it si one of the most important things we do to protect ourselves.
So yes I certainly do get the issue. One thing we say in the diabetes community is that about 80% of all deaths int eh US happen in hospitals. Moral to the story? Stay the hell out of hospitals. I think that sounds like I am being a smart ass, but I can say it has worked for me so far. 🙂
I think ‘Stay out of hospitals’ is excellent advice Rick, and I totally hear you!!!
Those IDs sound like they are a good idea for anyone with a complicated history or chronic illness. Something to make doctors take a little more care!
I have a typed out sheet with my dxn and all meds and does listed which sits in my handbag in my Dmard monitoring book. I check it regularly and update it. It also has the names etc of my rheumy and GP. I also have it all in my phone under the emergency info just in case. I also have my two known allergies to certain meds listed.
I think it’s the one single thing that we as patients can do to ensure that if we are ever taken in and unable to communicate, they can find out as much as they need to about us with a quick rummage through our bags.
Adding your doctors contacts is an excellent idea, Gillian. I’ll update the post…and my own information sheets. This stuff could make the difference between life and death in some circumstances, so important!