Last Sunday began like any other day. It ended with a trip to the hospital, and circumstances we had never been faced with.
I think you’ll agree, going to the hospital is generally not a fun experience. We recently spent 36 hours in the hospital for an Addison’s Crisis. In this post, we will share the details of what happened, and what we learned to be more prepared for future ER visits. Read this post to learn what you can do to have a more enjoyable experience when you visit the ER.
It all started around 11 pm. I was sound asleep when my wife woke me to let me know she wasn’t feeling well. I opened my eyes to her running into the bathroom to throw up.
A little over an hour later she threw up again, and we knew it was time to go to the emergency room. We had not been prescribed an injection kit, but if we had one, this is when we would have injected.
For most people, throwing up isn’t an emergency situation, but with Addison’s Disease, it is.
The Emergency Room
The Hospital is a short drive from our house, especially at 12:45 am. When we arrived and checked in, we let the person at the front desk know that my wife had Addison’s Disease, and she had been throwing up. Almost on cue, as we were giving personal info, my wife threw up again. I tried handing this form from the Addison’s Disease Self Help Group to the guy checking us in. This form outlines the special steps that must be taken during an ER visit to avoid an Addison’s Crisis. He glanced at the form and said: “oh we don’t need that. We know what to do.”
A few minutes later and we were taken to a room. This was our first trip to the ER, and I was impressed by how quickly they were able to get us in. As soon as we were in the room a nurse came in to take a blood test. The nurse also requested a urine test. The doctor arrived shortly after, and I once again offered this form. The doctor was not interested…
After the doctor left the room the nurse came back in to hook up an IV my to wife to help her rehydrate. Hydrocortisone should have also been added to the IV at this time, but that is not what happened. Just saline…
Here Comes the Addison’s Crisis
After about an hour in the ER, my wife started feeling major pain in her legs. She was also experiencing chills, and she was still feeling very nauseous. All signs of an Addison’s Crisis. Another hour passed (it’s 3 am now) and she still had not received the steroids she needed. Around 3:30 am she threw up again. Over the course of the last two and a half hours, my wife’s condition had rapidly declined, and the medical staff was not showing a sense of urgency to treat her.
I could tell that my wife was experiencing unbearable pain. Her whole body was shaking. I left the room with this form that I had tried giving to the admittance desk, the nurse, and the doctor. I found our nurse and told her that my wife was experiencing an Addison’s crisis. She needed steroids immediately.
A few moments later a new nurse arrived to take my wife away for a CT scan. I kindly declined and told her she needed to tell the doctor we are refusing a CT scan until she gets the steroids she needs. The doctor was convinced her symptoms were due to appendicitis. He came back to the room trying to lecture me on “impeding treatment” because I denied the CT scan.
The Squeaky Wheel Gets the Grease
During all of this, I had also been communicating with a friend of ours that has had Addison’s Disease for years. She gave me the recommendation to threaten legal action if they didn’t start treating her properly. I didn’t use that tactic, but after getting that advice, I became much more vocal requesting the proper treatment.
After “impeding treatment” and demanding my wife receive the life-sustaining steroids she needed, a nurse arrived and added the steroids to her IV. Within 15 minutes my wife was feeling better. The CT scan nurse came back to the room so they could check my wife’s organs. It was no surprise to us that she did not have appendicitis, and all of her organs were fine.
Around 5:30 in the morning the ER doctor came by our room to let us know she would be admitted to the hospital for the day so they could monitor her progress. All in all, the total stay was 36 hours, and we did not have any major challenges once we were admitted.
This was a learning experience for us, and our goal is to learn as much as we can from this, so our future emergency room experiences will be more “enjoyable”.
In emergency situations, we place blind trust in medical professionals to provide proper and timely treatment. Unfortunately, in this circumstance, we do not feel as though the treatment we received in the ER was proper. We are taking some steps now, to make sure this experience does not occur again in the future. Because of the nature of Addison’s, a future ER visit is inevitable.
- We are writing a letter to the hospital that provided care to share our experience. I am asking what steps they will be taking in the future to ensure the ER staff understands how to properly treat Addison’s patients when they are admitted to the ER.
- We have requested a prescription for the injection kit. We knew how important this kit was, and we’ve recommended you have an emergency injection on hand for emergencies. We didn’t have one because our Endocrinologist had declined our request.
- During future medical emergencies, speak clearly, kindly, and succinctly, using the terms “Adrenal Crisis”, “Addison’s Emergency”, and “steroid-dependent” when explaining the emergency situation.
This was a learning experience for us. We are sharing our experience with the intention of educating others that are sick or experiencing an Addison’s Crisis, in the future. If you appreciate this post, please share with your friends or family members that may be affected by Addison’s Disease.