Be Prepared, Not Scared
I’ve said this before, but it’s worth repeating: living with adrenal insufficiency is like switching from an automatic to a manual transmission car, without an RPM gauge to tell you when to shift gears. It takes practice and you must learn your body’s signals of an impending low cortisol episode. Journaling symptoms is the fastest way to write your own manual. Life-threatening adrenal crisis can and does happen (statistically, one every ten patient years). But, there are several tips I believe can mitigate the risk of that happening to you.
Carry an emergency injection kit. This is a box or pouch you carry in your purse, in your car, and in your home (ideally in all three places). Included in the kit is an Act-o-Vial (or two) of Solu-Cortef, an intra-muscular injection needle, a printed page of directions for how to administer said shot (I like this one: http://cahpeptalk.com/wp-content/uploads/2013/09/Pf0423_SC-Solu-Cortef-Emergency-Injection-Guide.pdf ) , an alcohol swab and band-aid. Please make sure your physician prescribes this to you as soon as you’ve been officially diagnosed. Some doctors prescribe the wrong medication so be sure the NDC number is 00009-0011-03. It should look like the picture in this post.
Sometimes, a doctor may say “You don’t need that, you live so close to the hospital and you can just call 9-1-1.” This is not true. Will you ALWAYS stay close to the hospital? Ever been camping? Or hiking? Is there a freeway between you and said hospital that may have traffic someday, delaying your medication? Is your doctor aware that most ambulances DO NOT CARRY solu-cortef on board AND that they cannot administer your shot to you in most counties/states? An AI patient can go from normal to a severe crash in as little as 30 minutes. The most common reason for an adrenal crisis is gastrointestinal illness, which can hit fast and hard.
Another question a local fire chief asked me is, “How will first responders know where to find your medication?” So, I added a line to my medical alert bracelet that says “EMERGENCY MEDS IN KITCHEN/PURSE” because I’d likely be at home or have my purse with me. Inside said purse is a LABELED brightly colored bag (https://www.zazzle.com/red_emergency_kit_case_life_saving_steroids_makeup_bag-223214431665564532) which has all the things I mentioned above. In my kitchen, I stuck a sticker (https://shop.aiunited.org/shop/ols/products/mini-kit-shipping-to-usa-addresses-only ) to the outside of a cabinet at eye level and then put another of the bags in there. I’m hoping the paramedics would be able to find it if I were found unconscious and alone at home. Train yourself and those around you on administration of the shot. It may seem frightening, but the more you’ve practiced it the easier it will be to do if you ever need to. Here is a helpful video which demonstrates how to administer it: https://aiunited.org/emergency/
Remember that administering an emergency injection will not hurt you if unnecessarily given in the short term, but if you do need it, it will save your life.