Support for Those Living with Adrenal Insufficiency

Suffering For Far Too Long

Originally posted in “Our Adrenal Crisis Stories”

AdrenalInsufficiencyAnonymous

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.

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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