February 28 is considered Rare Disease Awareness Day. I watch most of social media pass without a blip. I am not surprised. I had no idea there was such a thing. I am aware now. Around this time last year, my world tilted upside down. My husband, the love of my life and anchor of my soul, was dying before my eyes.
It started with gastrointestinal symptoms, headaches, fatigue. Doctors figured he had an ulcer and was working too hard. He was suffering from stress. Then the mental symptoms progressed. He became groggy and withdrawn. He wouldn’t communicate or move off the couch.
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He went to the hospital and it was clear something was really serious on Father’s Day 2016. He had lost 50 pounds, wasn’t eating and had develoepd abdominal pain as well. His appetite was non-existent and his skin looked tanned and darkened. He was sent home from hospital with a referral to a surgical team for a gall bladder removal.
I watched him crash within a week. He would vomit every day by 8 a.m. and had to crawl to the bathroom. He was down to 160 pounds from the 215 pounds he was at Christmas. I rushed him into the emergency room at the Ottawa Hospital’s General Campus. He was now jerking and shivering. His sodium was measured and critically low. Had we waited even a few more hours, he would have been at risk for seizures and coma. This time he was admitted as an inpatient.
My family and friends started watching my kids and providing all of us food. I would sleep at his bedside until the nurses would kick me out and I’d go crash at a friend’s house who lived close to the hospital. My daughter asked me if daddy was dying and I didn’t even know the answer.
Addison’s patients can have a normal life expectancy. It isn’t easy, though.
After several days on intravenous, he perked up. The medical team didn’t like that there wasn’t a clear answer. He was going to be followed by internal medicine with a watch on his thyroid and electrolytes. They discharged with the plan to follow him as an outpatient with the Internal Medicine Department.
Less than a week before his outpatient appointment, he crashed again and ended up back in the emergency room. This time his cortisol was really low and his joints were almost black. He would see internal medicine that week.
At this point my nerves were shot and we were both petrified. This was clearly more than a thyroid problem. We arrived for his appointment with me pushing him in a wheelchair. They had decided he needed an adrenal stimulation test to measure adrenal function, then placed on steroid treatment.
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We had our answer! He was given the diagnosis of Primary Autoimmune Adrenal Insufficiency, also known as Addison’s disease. He would be on life-saving steroids for life. He was at risk for other endocrine disorders, hence the secondary diagnosis of Hashimoto’s disease as well. He would need an emergency kit of an injectable steroid in case he went back into a crash. He naturally craved salt and needed Florinef to replace his almost non-existent aldosterone level.
He would live.
The prognosis now is good. Addison’s patients can have a normal life expectancy. It isn’t easy, though. Steroid levels need to mock natural cortisol production. Cortisol rises and lowers both daily and based on external stresses, like a common cold. My husband is lucky. He can still work, be a husband and father. I am incredibly blessed to have him by my side for as long as fate permits.