One of the most important lessons I've learned is that patients need to be informed about their own medical conditions. Even with great doctors too may things can slip through the cracks.
Alex is scheduled for an EGD/colonoscopy later this morning (did I mention she has Crohn's disease too?). Yesterday I spent a good part of the day making and receiving phone calls and still, this morning, I am uncertain that things will go smoothly. When we saw the GI specialist 6 weeks ago I had to point out to her that Alex would need stress dose steroids for the procedure. She agreed and asked that we check with Alex's endocrine team for instruction. Within a week I mailed the GI doctor a copy of an email from the UC Davis endocrinologist as well as a "Addisons Disease Clinical Advisory" sheet. I followed this up two weeks later with an email message, checking to see that it was received, but received no response. This week I spoke to people at both the doctors office and at the surgery center several times each, in an attempt to make sure at least some of the procedures will be followed.
As of 4:30 yesterday a nurse finally decided they would "try" and get the Solu- Cortef ordered in time for today's procedure. Will they monitor heart rate and B/P? Will they run electrolytes? Do they have any concept of how dehydration (from the "clean-out" and withholding of fluids) can affect someone without adrenal glands? I just keep thinking how dangerous this would be for an uniformed patient.