These articles are intended for sharing with others affected by AI. Each person's experience is unique and we thank those who share their struggles and challenges. Please note that these are the thoughts and feelings of the individual writer. Let’s work together to make this a caring community.
Originally posted in "Our Adrenal Crisis Stories"
The day after a close friend passed away, on January 9th 2010, I became ill with a fever of 102.8. I called my doctor’s office to set up an appointment and the nurse told me to wait a few more days saying, “We don’t worry about high fevers in adults, we only worry about that in children.” I called the next day and the next and finally they set up an appointment for the 14th. When I arrived the doctor dialed 911. The triage nurse watched in horror as the paramedics took me away on a gurney.
My memories are fragmented as I was transferred from one room to another. I remember opening my eyes as a nurse was entering the room and hearing from a place seemingly far away, “SHE’S TURNING BLUE!” Then a man was asking me if I wanted to be resuscitated. “Yes. That’s why I’m here.” I said as the blackness came over me again. In the ICU I was put in a drug induced coma. Days turned into weeks, until I could finally breathe again on my own.
Once out of the ICU I felt unbelievably weak. Several times nurses rushed into the room to tell me to lie down and relax because the monitor had alerted them that my heart was beating erratically again. The doctors said it was normal to feel like this after pneumonia. I’d had pneumonia before, and it was nothing like this. Then they thought I had Sepsis but they were unable to find an infecting organism in my blood. Then they thought I needed to take antidepressants, but I never took them because I knew I was physically sick.
I dropped fourteen pounds and looked two decades older than I had upon arrival. People were surprised to see me up and walking with my IV pole, they were sure that I wasn’t going to survive. The constant nausea improved but the diarrhea continued for a long time. My energy never returned. I continued having projectile vomiting and had horrible bouts of abdominal pain so bad that I went to the ER more than once but they couldn’t find anything. My blood pressure would jump from very high to very low. I had pneumonia another five or six times in the ensuing months after the “Sepsis like episode,” and caught every bug going around.
For years I had been seeking answers for these issues but the doctors had no idea what the cause was. It was a mystery. Looking back to January of 2010, it is clear that I didn’t have sepsis but instead had pneumonia as well as adrenal crisis. No one knew it at the time but they treated my pneumonia with steroids and that is what saved my life.
Twenty months after my hospitalization I had a cortisol test run and it came back at 0.4. Since starting Hydrocortisone, four months ago, I have not had a single vomiting episode. I still don’t feel great and am told that my immune system may never recover. My endocrinologist told me that my adrenal glands have atrophied from going so long without pituitary stimulation.
It’s a shame that no one thought to check my cortisol sooner. My health, my immune system, and my lung condition may not have been as badly damaged. The very saddest part of all this is that I was just trying to get good healthcare. I know that no one is perfect and don’t ever expect perfection. The very saddest part of all this is that Adrenal Insufficiency is not better known. If it was, I probably would not have had to suffer so much. or, for so long.
written by Laura,
This is my daughter Anna, a spunky 6 year old little girl who is full of life.
Anna was born with a rare genetic condition that causes her to adrenal insufficient, she also has Skeletal Dysplasia and Perthes Disease of the right hip. This bone disease causes the ball joint to die and she lives with chronic pain everyday. Due to the inability of her body to make stress hormones to deal with her chronic pain, Anna faces adrenal crisis often!
September 2011 was Anna’s first year of kindergarten she was loving every minute of it! It was also exhausting on her mentally, emotionally and physically. One morning before her 6:30 a.m. dose Anna crawled into my bed. After a few minutes I knew something was really wrong when she started shaking. It was dark in my room and I was disoriented not knowing what was going on. I turned on the lights and saw something I never want to experience EVER again!
Anna's eyes were rolled back in her head and she was having a massive seizure. I ran and got her Solu-Cortef® injection and gave it to her while my husband called 911. Although the EMS arrived within about 10-15 minutes, it seemed like hours. I just held my little girl who had become unconscious. Her heart was beating hard and fast and I prayed the paramedics would hurry. When they finally arrived they didn’t know anything about adrenal insufficiency and didn’t know what to do. I showed them the solu-cortef and they responded "We cant give her that!" I said "I know, I already did!" Anna’s blood sugar it was 17 so they gave her glucose and got her in the ambulance.
The ride to the hospital was the longest ride of my life!
After we arrived and I watched them pull my little girl out the back of the ambulance I thought she was gone...Her skin was grey, her lips were blue and she was still unconscious. My heart sunk.
Anna was wheeled her into our children's emergency room and was met by her special team of physicians and nurses. They’d cared for her since she was a baby and through many visits to their ER. They had emergency protocols in place to treat her and started care immediately giving her an IV and another shot of Solu-Cortef®. This immediate and proper treatment for Anna’s adrenal crisis saved her life!
Three hours after her arrival to the emergency room, she came around! The first words Anna said were “Get that bright light out of my eyes!” I have never been so relieved in my whole life!!!
In order to determine the cause of her adrenal crisis, she’d had no fever or sickness before the crisis, Anna was kept in the hospital for a few days. X-rays of her hips showed that her right ball joint had shattered and during that night. Anna’s adrenal insufficiency and inability to make extra hydrocortisone to cover the stress to her body had caused the crisis and we’d almost lost her!
Anna’s now on pain management and uses a wheelchair when needed. It’s so scary to never know when her body needs a "little extra", but Anna has a very high pain threshold and doesn’t complain. We keep a close eye on her and are always watching for other signs of crisis.
From Adrenal Insufficiency United: Please visit your local EMS Stations and talk with the Directors of your ER's. We also have emergency kits for both patients an Health Care Providers.
AIU is a tax exempt 501(c)(3), we rely on donations to carry out our work on awareness and implementaion of emergency protocols. If you are able to help contribute we appreciate donations of any size. PLEASE DONATE HERE
Short testimonials on the need for Emergency Protocols
Written by several different authors:
I am an ER nurse and my husband is a paramedic. One morning we left for work early while our son was still sleeping. Around 8:30 am the nanny called me and said our son wouldn't wake up. He had gone to bed normal and had not been sick, so my husband and I were in shock that this was happening. Our nanny called 911 and they arrived quickly. I was surprised though when they wouldn’t give him the Solu-Cortef® shot. I had to talk my friend from down the street into giving my son the injection. After his shot, he perked up a bit, but still was clearly not himself. The ambulance showed up and basically gave him a $1000.00 taxi ride to the hospital. He was brought to the ER where I worked and half the hospital was there waiting for his arrival.
My husband had an ER disaster. The EMTs and the hospital would not contact Medic Alert because he was not wearing his necklace (he took it off because he was vomiting and it was getting in the way, yet I had the necklace with us). The ER doctor thought he was having a stroke as he couldn't remember his age or address, etc. I had to literally climb across the ER counter, get in the doctor's face and threaten a lawsuit if they didn't get him the injection of Solu-Cortef® and medication he takes to stop vomiting.
Our daughter went from having a minor virus with diarrhea to being unresponsive very quickly. The walk-in clinic couldn't do anything but call 911. It probably took us longer by ambulance and was just an expensive ride to the ER as they couldn’t get an IV started or take her blood sugar levels. Luckily the hospital got her medication (Solu-Cortef®) in by IV, but she still ended up in ICU for several days. It was her first crisis, and even as a doctor myself, I was shocked at how quickly she got sick. The shot (Solu-Cortef®) goes with her now almost all the time!
My son has CAH and is Adrenal Insufficient. One time he got really sick so we rushed him to the hospital. When we arrived at the hospital my wife and I explained our situation and they had no clue what CAH or Adrenal Insufficiency was. After 45 minutes of us trying to explaining everything to the doctors they decided to look it up. We kept telling them that our son needed the Solu-Cortef® injection and they REFUSED to inject him, even though we had everything there. They kept saying that they didn’t want to be responsible because THEY didn’t prescribe the injection. By now almost 2 hours had gone by while we waited for them to contact his specialist. Finally they came back and stating that they were going to assist me with the injection. The look on my son’s face during that scary night is burned into my mind. The hospital and doctors had no clue at all about CAH, Adrenal Insufficiency, or the injection.
I experienced an Adrenal Crisis waiting in an emergency room because they made me wait 45 minutes after check-in even when I identified that I was experiencing a life-threatening condition. I've since learned that requesting to speak to a hospital administrator is one way to ensure you receive timely treatment when checking into the ER during events that are life-threatening.
I had an incident in April when I had stomach virus with vomiting and diarrhea. I had to wait 5 hours before they took me into the emergency room, then I had to wait another 5 hours to get the Hydrocortisone. It was a nightmare and uncalled for. There should be some kind of protocol for Addison’s Patients in the hospital.
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HELP SAVE A LIFE: SEND A KIT TO A FIRE STATION
There are approximately 48,800 fire stations in the USA staffed by about 1,190,000 personnel.
Appropriate and immediate treatment for those in Adrenal Crisis cannot happen unless EMS are aware of the signs, symptoms, and how to treat.
For only $10 we can provide each fire station with the resources needed to put training in place for Adrenal Crisis. That means we need $488,000. You might say that’s impossible....it’s not. Our reach on Facebook.....friends of those who have liked our page is over 300,000. That means if we can get 15% of them to give $10 we’ve got it done. Can you get 15% of your FB friends to donate $10 to save a life? It’s certainly worth a try.
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