Advocacy

Adrenal Crisis: Another eye opener into why we need awareness

Personal Experience of an Adrenal Crisis.

July 5th- I was having a lot of weakness in my legs and I felt like I had run 10 miles. I couldn’t catch my breath when I was talking. I started to feel really different, something wasn’t right. Ended up having to use my wheelchair because my legs couldn’t support me. I got really dizzy as my husband was pushing me to the couch, and then I couldn’t breath. I was having a very hard time getting air. 911 was called and they took me to the ER.

The Dr. refused to give me hydrocortisone until he talked to my endocrinologist.

He ordered a chest X-ray and CT scan, bloodwork and urine sample. All those came back great (They were testing for heart attack symptoms), which we told them several times, I was in an adrenal crisis.

Still no hydrocortisone.

They gave me meds to slow my breathing. Once it hit the IV my whole body tensed up, I was shaking, I couldn’t move and I couldn’t breath. I started to fade, the nurses voice and my husbands were in the distance. I was scared because everything was black and they were next to me but sounded like they were so far away.

Then I stopped breathing.

The nurse was yelling at me to breathe and was pounding on my chest with her fingers, she kept telling me this and pounding on me, again I slipped into the black and her voice was far away. She slipped some oxygen on me, finally, and I was brought back. After that everything leveled out.
Since I wasn’t having a “normal” adrenal crisis, they sent me home.

I rested all day but I still couldn’t use my legs, not even enough to use to get myself in the wheelchair. It was really scary. For all of us.

July 6th-I was just exhausted (but that’s normal). I was able to eat without having that horrific pain. (July 3rd and 4th I did Ex-lax and water to see if that would clean up stomach up enough where I could eat without the pain, nausea, and severe bloating).

This was a reminder of the severity of my disease and that I need to really take it easy, not push myself, and let go of the things (and people) that cause a lot of stress in my life.

I’m so proud of the boys for stepping up the way they did. My middle son took my youngest to the bedroom and kept him calm and distracted while the EMTs were here. My oldest held it together, tried to keep me breathing, was telling the EMTs over and over that I needed my shot, what disease I had and that they needed to give it to me. He answered all the questions, because I couldn’t talk, he even corrected my husband about my age.

My husband handled it okay. He was scared and broke down a bit, but my oldest did good at calming him as well. I’m thankful they did amazing at advocating for me. I’m so proud of them. I just hope that doesn’t happen again, because I was terrified.

I can’t tell you how often this happens, people denied hydrocortisone because the doctors don’t know anything about Addison’s disease.

Instead of listening to the patient, they deny them the one thing that will save their life. I get that there are procedures, but most people (like me) are told “no.”

I know of four people in groups I follow on social media (in the year I’ve been apart of it) who have died after going home from the ER because the doctors refused to give them hydrocortisone. They were told they were fine or over reacting and that nothing was wrong with them.

This really angers me that there is no understanding of this disease and doctors don’t take it seriously because they don’t know or don’t understand it.

I want to make my voice heard and I am doing what I can to bring awareness.

-Chronic Mom, Adrenal Alternatives Foundation Contributor

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