Support for Those Living with Adrenal Insufficiency

What Constitutes an Emergency

by Sarah Reilley   Read more from her blog @ Spoons and Adrenals

As we all know, adrenal crisis is a life or death situation.  Without immediate, proper care, there’s a very small window to correct the crisis before coma, brain damage, and death occur.  Not every emergency department knows this, however.  I’m sharing my experience so that everyone can recognize the importance of a true emergency plan, and to ensure that your local EMS knows how to handle an adrenal crisis.  Mine sure didn’t…

Around 7:30 p.m. on July 21, 2017, I started to experience an adrenal crisis.  I was weak, had difficulty breathing, dizziness, nausea, headache, abdominal pain, flank pain, dehydration, profound weakness, and fatigue.  I tried to take extra oral hydrocortisone, but it had no effect, so around 7:45, as symptoms were becoming more intense, I decided I needed to be seen at the emergency room.

On arrival, my husband told the emergency attendant that I was having an adrenal crisis.  He had given him my emergency hand-out, that I had created for this purpose, when he went inside to get a wheelchair for me, as I was unable to walk, had difficulty speaking, couldn’t keep my eyes open, and could barely hold my head up.  The man handed it back to us as soon as we entered the building, and handed me the papers to sign for admit.  He asked me what was wrong, and I said “It’s hard to breathe, and I’m having an adrenal crisis.”

The man said he didn’t know what that was, so my husband tried to explain it as my body does not produce the stress hormone cortisol.  The attendant said, “ok, so it’s hard to breathe and anxiety.”

I loudly informed him that it was NOT anxiety, and that adrenal crisis was my body shutting down.  He said that they would get me in soon, and closed the window.

Two other patients, one in a wheelchair, but conscious, and another, conscious and ambulatory were in the waiting room as well.  The first was taken back about 10-15 minutes after our arrival.  After that patient was wheeled back to the ER, I asked my husband to see if they were going to take me in, or let me die.

He asked the attendant if they were going to get me to a room soon, and was told that they would get me back soon.

Approximately 10 minutes later, the ambulatory patient was called back.  I asked the nurse if she knew what an adrenal crisis was.  She replied, “yes, we will get you back soon,” and left with the ambulatory patient.

My husband then went to ask the attendant if they had any idea what an adrenal crisis was, and that it would really “suck if she died in the waiting room.”  He was told by the attendant that the doctors knew more about my condition than we did, and we needed to wait.

Approximately 5 minutes later, we were taken to a room.  The nurse proceeded to ask her intake questions, and despite our repeated requests for them to start an IV immediately and to administer 100 mg of solu cortef and IV fluids, continued to just ask questions.  She took the information sheet with her, where I explained the treatment and condition for Adrenal Insufficiency and adrenal crisis.

Approximately 30 minutes later, the doctor on duty came in to talk with me.  He asked my symptoms, and he said he would get some blood work done and then go from there.  I informed him that it is not appropriate to delay treatment, and that the IV needed placed first, and they could draw labs at that time, and administer solu cortef and fluids as we waited for lab work to return.  I told him that this was in every endocrine journal and was standard procedure.  This was also listed on the information sheet given to the nurse.  He reluctantly agreed to order the IV, though it was another hour and a half before they were administered.  He also agreed to order a CT, as I was concerned about possible diverticulitis, as discussed with a doctor at the clinic earlier that day.

The lab sent up a lab tech to do a blood draw, and I asked if he was there to start the IV.  He was not aware that an IV was ordered and went to ask.  He was told that it was, and left.  A few minutes later, a nurse came in to start the IV.  I informed her that my right hand is the best location for an IV, as my veins elsewhere are not easy to find, and tend to roll. Instead of starting an IV in the fastest location, the first nurse attempted to place an IV in two different locations, one on my left forearm, and one in my right elbow (inside the arm).  She was unsuccessful.

The lab technician returned to draw blood, and chose to use my right hand for the draw.  I asked him if this would affect their ability to place an IV in that hand later, and he said that would be up to the nurses, but that radiology doesn’t want IVs placed lower than the wrist, as the contrast couldn’t be put in an IV in the hand.  I told him that was untrue, as a major clinic, where I was diagnosed two months ago, used an IV in my hand for contrast with no difficulty.  He said that wasn’t up to him, and continued to draw blood from my right hand, which I had already explained was my only good vein.

When a second nurse returned to finish the IV, we had been in the ER for almost two and a half hours with no treatment.  She tried to find a vein in my right elbow, where the first nurse attempted, and was unsuccessful.  She remembered me from a previous incident, and knew my hand was the best place.  She tried to place the IV in my hand, because the medication was priority over the contrast for CT.  The IV had good flash, but infiltrated.  She then attempted to use another vein in the same hand, and had the same result.

This nurse was then able to place a successful IV in my left hand, using a pediatric needle and a vein in my first finger.  The saline was administered, and around 10:45 pm, I finally received 100 mg solu cortef.  Within 10 minutes, I noticed a marked improvement – I could speak clearly, keep my eyes open, and sit up without much difficulty.

Radiology then took me for the CT, and when we returned, the nurse assigned to me came by to let me know that the information I’d given them on adrenal insufficiency and adrenal crisis was really interesting and she was going to keep reading it.

The Dr then came in to tell me that the CT didn’t show anything obvious, , and that my lab work was good.  He sent me home just after midnight.  There was no observation time to ensure that the risk of crisis had passed.

The delay in treatment could have been devastating, had I been in a full blown adrenal crisis.  It is essential that we all know the signs and symptoms, and that the medical professionals around us do, too.  I was lucky, mine was just low cortisol.  I hadn’t hit the crisis stage yet, but as any AI patient knows, it is a VERY. FINE. LINE.

Bottom line – advocate for yourself fiercely, and try to keep another advocate with you at all times!

We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

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