As I write this the first big rain from Subtropical Storm Beryl is beating against my bedroom window. Since the storm is near hurricane strength it promises to get worse as the night wears on. And the predictions are that I’m stuck with it for a few days. I live on the coast of Georgia.
But as the storm gets going another one is winding down for me. Since this is a personal blog about my personal journey with Cushing’s as well I’m going to tell the story. The story in some ways is something most Cushies can relate to, as those who followed me on Facebook during this ordeal reminded me as they were there for me. This isn’t a bitching session; some of my Cushie friends kindly let me get that out of the way, like any good herd of zebras. This is for your information and insight on what those of us with chronic diseases go through if you don’t have one.
This one started when I found a tumor. Cushing’s is caused by tumors, mostly tumors which run deep and require special imaging to find. However, in rare cases, often the really rare familial Cushing’s they can occur in a place where it is possible to find them on your own if they’re not micro tumors. So when I found a tumor on a routine self-examination of that personal area, oh well, my scrotum and testicles, I thought maybe I found the tumor.
Now the first thing to understand is that anytime one finds a lump in a man’s jewels it needs to go to a doctor and most times will likely be removed. So the next step was one I would’ve taken without Cushing’s being a factor. However Cushing’s did make for a complication. I would be examined three times before the tumor was removed. Each time about two days after the examination I went in to a cortisol crash. I know what those are like because I go into them every time some doctor orders up what is known as a Dex suppression test. So I mention this to the surgeon who was to remove the tumor and to head off any problems he gives me an injection of hydrocotisef while I’m under in the operating room and gives me instruction for taking some prednisone for the next three days which were reasonable.
The day of the surgery, and the day after I’m fine. But everything starts to go downhill after that and by Sunday (the surgery was on Wednesday) I had to go to the emergency room with acute respiratory problems. While the ER doctor is examining me I go into extreme cramping all over my body. It was one of the worse days of my life. Needless to say I was in a critical situation. After a ton of morphine and other medications were given me I was sent home instead of admitted with instructions to take massive doses of prednisone until I see my surgeon at my scheduled follow-up.
That follow up was the next Friday. That day my morning blood sugar was 490. Since I was to see the doctor I decided to keep the appointment as scheduled and let him send me down to the ER, the likely course of action since his office is in the hospital I also took more of the medication I use to control my diabetes to hopefully bring the sugar down. Just before I leave to see him I check my blood sugar again and the machine reads “Hi.” Blood glucose testing devices generally won’t go above 500, which are considered lethal.
By the time I get to the ER and they finally pull blood to check my blood sugar I was going into a diabetic coma with a blood sugar of 632. The culprit was the massive doses of prednisone which had been prescribed me. Once again at the ER I’m pumped full of insulin until my blood sugar went down to 302 and then sent home for my family to deal with. When I call my surgeon Monday and tell him the details the first words out his mouth were “and they admitted you?” As you know, they didn’t. He couldn’t believe that and the doctor he sent me to begin to wean me off the prednisone wasn’t too pleased with it either.
Now I’m being weaned off the prednisone slowly being given medication to prevent cramping and insulin to control my blood sugar during the weaning process. I think the doctor wanted to have me admitted to do it under more controlled conditions, but considering the reluctance of the hospital to admit me when I was in critical condition not just once, but twice in a week he opted to go the route we’re taking now. What is the matter with my local hospital that they seem to be acting in a way which invites a lawsuit is beyond me, but this situation isn’t by any means all that strange to those of us who suffer from Cushing’s and its affects.
Everyday Cushing’s patients who have had their adrenal glands removed will develop the symptoms of Adrenal insufficiency (AI) and have a hard time at the ER. Many now carry letters from their endocrinologists for emergency room staff when they go. So it would seem my experience is by no means unique. Medical zebras aren’t so easily seen as their wild namesakes. Our diseases often look like other things. So we don’t get the care we rally need in more than just the ER setting. It still boils down to that old saying about hoof beats.