Revisiting a Perfect Storm, Six Years Later

Revisiting a Perfect Storm, Six Years Later

I have previously mentioned my two greatest fears when it comes to living with Adrenal Insufficiency. These include the following adrenal crisis scenarios:

  1. Beginning to crash towards an Adrenal Crisis in a place where no one knows me.
  2. Beginning to crash towards an Adrenal Crisis while flying on an airplane.

 

An Adrenal Crisis while Flying on an Airplane

I crashed towards an Adrenal Crisis while flying on an airplane for the first time on June 17th, 2014. I was on a flight from South Korea to Malaysia flying over open water. The event culminated in me receiving additional cortisol and IV fluids in an international airport upon landing.

Adrenal Crisis

Photo from June 2014 at the Kuala Lumpur International Airport. The doctor had to use my hand as that was the only vein he could find.

 

I survived.

 

The second time I crashed towards an Adrenal Crisis while flying on an airplane happened on June 25th, 2018. I was returning home from a brief layover in Chicago. This particular episode culminated in me receiving 100 mg of solu-cortef from a Good Samaritan in the terminal, an additional 125 mg of solu-medrol from the EMT in an ambulance on the tarmac, and an additional 100 mg of solu-cortef and seven liters of fluids while in the emergency room.

adrenal crisis

After I was released from that ordeal, my two kitties did not leave my side. Photo from June 2018.

 

I survived.

 

One of my biggest fears I have already survived, not once but twice.

 

An Adrenal Crisis in an Unknown Location

The first time I crashed in an unknown location, it inspired the Nightmare blog post. For several years after this incident, my family and I struggled to come to terms with that horrible ordeal. Yes, I was alive after that episode. But it left semi-permanent scars in terms of PTSD and an increased anxiety in normal, everyday situations. Through therapy, targeted coping strategies, and time, my day to day struggles with the nightmare have reduced dramatically. For that, I am thankful.

But what caused it? What made it so bad?

 

A Perfect Storm

Part of what made the original nightmare so terrifying was everything that could go wrong did seem to go wrong. It was a compounding of events.

  1. I was already feeling unwell that morning and knew something was “off.”
  2. I had already seen another doctor.
  3. This was the first time the new doctor and the staff met me.
  4. The doctor and staff refused to listen to my mom.
  5. The doctor did not want to take responsibility for my care.
  6. The EMT’s were unfamiliar with Adrenal Insufficiency and refused to take action.
  7. The ER staff was unfamiliar with Adrenal Insufficiency and delayed treatment.

Typing up that list, even six years later, causes me to shake my head in disbelief. April 19th, 2013 will forever be one of the scariest days of my life.

 

But, I survived.

 

If any one of those items on the list above were modified slightly, the outcome could have been different. How do I know this? Well, I had a chance to revisit this “perfect storm” on May 15th, 2019.

 

An Adrenal Crisis in an Unknown Location, Take Two

Although it took me several months before I was able to speak of the horrors of the Nightmare, I have no issue typing up this episode to share it with y’all so soon after this event. That shows how far I have come in my healing journey.

I am actively rewriting the negative narratives and replacing them with the more positive narratives. I am Clearly Alive and will stubbornly remain so.

But let us return to revisiting the perfect storm, “take two.”

 

1. I was already feeling unwell and knew something was “off.”

The day before at work, I started to have some sort of allergic reaction to something. I was struggling to breath and my nose was running non-stop. I did not know if this was my body’s way of thanking me for taking it to China, the land of the no blue skies and intense smog. Or perhaps this was just me being greeted by the Southern Spring with its yellow pollen rain.

Regardless of the cause, I had a suspicion that I was bordering on a sinus infection. I requested to work from home that day as an attempt to give my body a bit of a break.

I knew that something was not right.

 

2. I had already seen a previous doctor.

While the Nightmare crisis of 2013 involved an initial trip to my endocrinologist with a later trip to a new primary care physician, the adventures of May 15th 2019 actually involved two dentists. I had a 9:30am dental consultation to discuss a tooth that had been bothering me for quite a while.

After x-rays and a description of my symptoms, my dentist urged me to see an endodontist (a dental specialist) immediately. Like same day, urgent appointment. Oh and if they could perform the root canal during that appointment, do it.

Wait, what?!

That was a lot of information to take in. It was also scary due to the sense of urgency that they were conveying. But I sat there in the consultation room as the appointment was scheduled for 3:00pm that same day. The lady scheduling my appointment urged me to go ahead and allow them to treat the problem immediately if I was willing.

I looked at her in disbelief. “Are they prepared for my medical condition?”

“Um. What?”

“I refuse to have dental work done when they are unprepared for my medical condition. Will they know my medical history?”

“Well, uh, this is your first time seeing them. So no. You go over that during your first appointment.”

I left the dental practice in overwhelmed and in tears. The reservoir of cortisol that I had was being drained rapidly.

 

3. This was the first time the new doctor and staff met me.

I am confident that I am not alone with the dread of filling out new office paperwork. That medical history section? Yeah. I hate it. I hate listing every thing that is potentially wrong with me only to hope that the staff doesn’t just scan over it. It is a painful reminder of how I do indeed live in this Chronically Ill world.

To make the process easier, I carry a list of all of my medications. It’s a typed excel sheet that is in my emergency injection kit. When I went to pull out the list to photo copy it, I made a terrifying discovery.

 

My emergency injection kit was not in my purse.

 

I forgot to move the kit back from my “China travel backpack” to my “every day purse.” This terrified me, further draining my cortisol. The front desk lady didn’t understand my fear. I told her that if I began to crash, I did not have my emergency medicine on my person.

She did not fully comprehend the gravity of my statement during that moment. It was only later that the implications of that sunk in.

 

4. The doctor and the staff refused to listen[ed] to my mom.

Okay Clearly Alive Family, this is where the stories no longer parallel. This marks the difference between my 2013 crash and my 2019 crash. This one critical point drastically changed the outcome. And for that, I am thankful.

As I went to turn in the insurance forms, I realized that I was about to crash and it was not going to be pretty. The last thing I did before I fell down was call my mom, place her on speaker phone, and throw the phone onto the counter. I knew I was about to lose my ability to speak, reason, and most importantly, advocate.

To the outside world, it would appear that I was throwing a temper tantrum mixed with an anxiety attack. To those familiar with my disease, they would recognize my body systematically shutting down.

My mom was already aware that I was feeling unwell, as I had been in contact with her throughout the day. She immediately began to advocate for me, as I could not speak for myself. The next moments are incredibly fuzzy in my memory. I do know that I was escorted out of the waiting room and into a back room. I was also surrounded by several staff and eventually the endodontist.

 

5. The doctor did not want to take [took] responsibility for my care.

I am quite proud of my emergency injection kit. It has everything that a person could possibly need. This includes several vials of the act-o-vial solu-cortef, multiple intramuscular needles, ample alcohol swabs, band-aides, and even instructions on how to inject.

But that kit is absolutely worthless if it is not on me.

In an emergency, I need the solu-cortef injection. The act-o-vial is much easier because all there is no measuring required. In a pinch, the powder plus sterile water works. You just have to measure out the sterile water.

 

Adrenal Crisis

These two vials are the same medicine. The one on the left is called an “act-o-vial” and is better to use in an emergency because the liquid is already included. The one on the right requires external sterile water to be reconstituted.

 

By the Grace of God, I had my emergency cortisol pump kit. This kit contains everything necessary to perform two site changes. It has sterile water, solu-cortef powder, and several infusion kits. It does not contain intramuscular needles.

The endodontist repeated how he was unfamiliar with my medicine. Initially, he did not want to inject me. But between my urging and my mom’s urging he revised his stance. He mixed up 2ml of sterile water with the powder. There was a bit of a hunt for needles. I think they ended up using one of the needles that normally numbs patients for dental procedures.

He injected my life saving medicine into the muscle in my arm. Almost immediately, I felt the relief. His actions halted the spiral towards an adrenal crisis further.

 

6. The EMTs were unfamiliar with Adrenal Insufficiency.

The office staff still called an ambulance for me. When the EMT’s arrived, there was an unexpected surprise.

“So just to let you know, I’ve actually rescued you before.”

“Ha. Really? Ok, was it town home or apartment?”

“Well town home. But I was also the EMT that picked you up from the tarmac. When they radioed in female, Addisonian I thought to myself, ‘That can’t be the same girl! She doesn’t live over on this side of town.’ And yet, it was you!”

“Yeah… I was here for a dental appointment. I didn’t even get to the appointment part. I crashed before.”

To be honest, I was embarrassed that this particular EMT has rescued me by way of ambulance now three times. But I also took comfort in she remembered me, learned more about my disease, and was willing to advocate for me once I reached the ER. It was such a different experience than six years ago.

 

7. The ER staff was unfamiliar with Adrenal Insufficiency.

I did have to wait about two hours after triage before being seen due to the busyness of the ER. But I did not mind the wait. I knew the emergency injection delivered by the endodontist stopped the spiral towards full crisis.

Once in a room, I had the standard blood work with IV fluids shortly following. I also received a few doses of an antibiotic as a preventative measure.

 

Conclusion

This had potential of being a repeat of my 2013 Nightmare crisis. The foundation for the storm was there. But it changed course due to the action of one individual.

I am so thankful the endodontist put aside his fears of dealing with an unfamiliar medication and decided to listen to both my mom and I urging him to inject me with my life saving emergency injection. His action drastically improved the outcome of the situation.

 

If you are witnessing a medical emergency due to a rare disease, please listen to the patient or their advocate.

 

Yes, you are unfamiliar with the situation. But we aren’t. It might look strange to you, but it is our “normal.” We are the experts. Trusting us empowers you to help us remain alive.

And it is my hope that we may all remain Clearly Alive.

Amber Nicole is Clearly Alive