APRIL IS CUSHING's AWARENESS MONTH
Adrenal crisis is a reality for most Cushing's patients post op pituitary surgery and post op single adrenalectomy (unilateral adrenalectomy ULA) or double adrenalectomy (bilateral adrenalectomy or BLA). In fact, this article published in ——- in the journal ——- (insert link) says that even educated patients go into adrenal crisis. "Insert quote from article"
listing the top three reasons for adrenal crisis:
(Insert red graphic)
adrenal crisis is a stop sign. Take steps before to ensure you stop in time.
WHAT DO I DO WHEN I FEEL SIGNS OF ADRENAL INSUFFICIENCY?
(Insert AIU graphic)
How many symptoms of adrenal insufficiency do you have? Start stress dosing when you have 2-4.
Add part about looking at activities for the day, staying ahead of cortisols hole.
For me, it starts with stomach pain. I feel like something just stabbed me, and I put my hand on my abdomen to check if someone hasn't stabbed me when I wasn't looking. Then comes the lower back pain. I have degenerated disks from L3-5 and S-1, so I'm not sure if it is really adrenal insufficiency. When the diarrhea hits, I know there is trouble. It's never the soft serve stool kind. It's the explosive fish flakes almost water kind. Once I get three symptoms, I take 20 mg hydrocortisone under my tongue, which tastes horrible, and set the timer for 45 minutes. It I don't feel remarkably better (like a wilted flower that perks up with water), then I take another 20 mg. If I have diarrhea again, I take another 40 mg HC under the tongue and set timer again. I'll try to get gatorade/ electrolyte drink and add pink Himalaya sea salt to the lid and dump it in. Plus I lick my arm. If I'm salty, I know I'm losing salt and then sodium becomes too concentrated in my blood, which causes potassium goes too low. So then I start drinking the pickle juice. Yum so tasty. If I have diarrhea more than three times, I inject myself with the solu cortef injection, placing a 3" needle into my thigh. My husband or I drive to the ER because now I'm dehydrated, which concentrates and increases the sodium, which lowers potassium, which is so dangerous.
I have to convince the intake nurse that we ought not be triaged because this is life-threatening just like a type 1 diabetic with low blood sugar!! I have to show them an emergency letter from my doctor (not at that hopsital), the National Adrenal Disease Foundation letter, and Adrenal Insufficiency United infographics stating we should skip triage. The nurse tells me to sit down, and I refuse. I say I will stand at the desk and wait. I ask him or her to take that letter to her manager. This tactic usually works. I am the next to go back to get vitals checked. Then I get a room!
Once I get back to the room, the struggle continues. Sometimes I get a doctor who understands what I'm asking for: IV fluids and IV Hydrocortisone 100 mg. Other docs tell me that I can't be in adrenal crisis because my blood pressure is high. I explain that I took extra steroids (____ mg HC) at home because we are taught to self-treat cortisol lows like a type one diabetic is taught to self-treat blood sugar lows. After multiple dehydrating events like diarrhea and vomiting, I must come to the ER for IV fluids. Labs run at the ER should not determine my need for IV hydrocortisone and IV fluids. I am taught to go to the ER in adrenal insufficiency as a way to prevent adrenal crisis.
It should simply be as easy as saying, "I'm facing adrenal insufficiency and need IV fluids and IV hydrocortisone." However, it seems it is always a battle to get those. Having those letters on file so ER staff knows your medical condition is helpful but still doesn't always work. Many are tempted to treat at home and avoid the ER based on past experiences at the ER when they didn't get the help they deserved and needed. This is a dangerous situation for us patients, because when we need IV fluids and IV hydrocortisone, we need it. Although adrenal insufficiency is considered rare, just as Cushing's is, we must educated those around us to ensure we get the care we need. Don't give up on this. These efforts can and will save your life.
TEACH LOVED ONES TO BE YOUR ADVOCATE
save infographics on your phone in adrenal
Hold a meeting to discuss your condition with friends and family. They must know how to help you. While you may want to avoid this, let me state here that people would rather know how to help you—no one wants you to die on their watch. The guilt and sadness of not knowing what to do to save you is too heavy a burden for our loved ones to carry. Make it fun. Make up pretend scenarios, ask them questions and have them find the answers in the folders (below). Just as fire drills help us know what to do in the event of a fire, adrenal crisis drills help in the same way.
Create paper copies in folders with this info to keep in the cars of anyone you would ride with or who would visit you in the ER and hospital. Information is easier to see when printed out on larger paper, although phones have worked too.
Send same images to friends and family, anyone who you spend time with