Staying Alive: Adrenal Insufficiency Edition

Sometimes I am pleasantly surprised with a good day. I have good energy and can accomplish almost as much as anyone else. I took advantage of this occasion and ran some errands. One of the places I went was the hospital. (This was a good visit though.)

THE EMERGENCY PROTOCOL

I finally took the advice I’m always giving to others and gave my local ER a copy of the emergency protocol for adrenal crisis.

This is hands down THE BEST guide I’ve found for emergency managment of Adrenal Insufficiency including stress dosing and adrenal crisis protocol. You should have a copy of this! 😉 Click the link to download the PDF.

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I went right to registration and after their initial confusion, (this is an uncommon practice for patients) they scanned it right in. All of the hospitals in my area have the same computer system, so now all of them will know how to save my life.

This past June, I had the misfortune of visiting the ER for an adrenal crisis, and they did not respond appropriately to the urgency of the situation. I cannot blame them for this, unfortunately it comes with the dubious honor of being so rare. However, my (now former) endocrinologist was unreachable by the ER staff, and this caused a delay in treatment that nearly cost my life. My goal is for that to NEVER happen again.

THE ID

Another necessary step was getting my medical ID updated. In my crisis, I could not speak. I cannot express how frightening it is to be alone, know you are in danger, but unable to speak or advocate for yourself. Do not assume there will be someone to speak for you. Get an ID, make sure it’s up to date.

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This is from RoadID. Use this link and 10% of your purchase goes to Adrenal Insufficiency United and the National Adrenal Diseases Foundation.

This one replaced my stainless steel chain bracelet. Gone is the old doctor’s name, and in with the new. My new doctor gave me her cell and home numbers for my ID. It gives me so much peace of mind to know I have a doctor that cares in my corner.

THE INJECTION

I also added this info to my emergency injection kit, and put a more eye-catching alert on the front.

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I added a QR code that links to THIS instructional video. In my kit I have 250mg Act-o-Vial of Solucortef, syringes (22 or 23 gauge is best,) alcohol swabs, cotton balls, and Band-Aids. Also, I have my emergency contacts, and a print out of injection instructions with pictures. I picked up my case in the tackle section at Walmart, but you can also find it HERE.

Here is the QR code I have in my kit. You are welcome to save and print it.

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With any luck, all of this preparation will keep me alive! Stay safe out there friends!

❤Michelle

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11 thoughts on “Staying Alive: Adrenal Insufficiency Edition

  1. Michelle, this is awesome. What protocol document did you give them? And they were able to add it to a chart so that if you ever come in again they will have it? Wish my endo was this caring. Good for you!!!!

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    • Thanks Kari! Yeah, I went in the main entrance and went to registration, they were a little confused that I wasn’t there for a procedure, but I explained that I have a rare condition and my doctor needed this emergency information on file. I added you to a group where you can find the documents. 🙂

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  2. Good evening,

    Would you be willing to share a copy of the info with the QR code that you put into your kit? I had an adrenal crisis during surgery last summer. The hospitalist diagnosed me with adrenal insufficiency but it took 6 months to find an endocrinologist in my area who knew how to treat me properly. Knowing that not many physicians are familar with this condition, is very scary and unsettling. I am thankful that I found your blog and for your life-saving advice!

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  3. I am many years on Hydrocortisone , almost twenty years now. The last time I went to A/E my bracelet was the last thing looked at . I was dehydrated so this was priority. If you are ill or in an accident this is so important. Thank you, will download this.

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  4. Hi Michelle,

    Would you be able to share the link to the documents you mentioned? Appreciate if you can! I’m needing to get organised.

    Thanks!

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  5. Hi Michelle, could you share the site for the protocol? When I click on the link you have in the article, I get a warning saying it’s a “deceptive” site and I can’t get further. I’m sure it’s not 🙂 but I would like to connect to the protocol. Thanks!

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    • Hi Sally! I would be happy to email you these documents but I don’t think I have your email address. If you “follow” the blog it will send your email address to me. This would be ideal, that way your email doesn’t have to be posted publicly.Comment back if you have any problems and we’ll figure out an alternative.:)

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