And It's About Time There Was Some Support For Cushing's!
I'd had a rough few years from about 1993 on. I'd ballooned in weight from a typical 230 to about 330. My skin became paperthin... if I cut myself, the bleeding usually didn't stop. Previously, cuts coagulated immediately. I was tired. In fact, I was diagnosed with sleep apnea and was given a CardioPulmonary pump to sleep with.
One Saturday, my ankles were so swelled up with edema that I could barely walk. My wife told me to go to Urgent Care to see if they could help me.
I got LUCKY! I was seen by a Dr. Duckworth at Vancouver Clinic. He had never laid eyes on me before but the first thing he wondered about was Cushings. My regular doc had seen me regularly but never thought about it. Duckworth ran tests and I was diagnosed with Cushings Syndrome.
That's when the fun began.
Surgery was scheduled at Oregon Health Sciences University Hospital. Since they're teaching hospital, they wanted to thread a probe from the groin to the area near my pituitary gland to ensure that indeed there was the right chemical there to confirm the diagnosis. My insurance company balked and said that the test was not necessary (it would have cost about $13,000 for the test).
I got pretty riled up... since things were not happening the way I expected.
I shared my situation with some friends in Seattle who were connected with some of the docs in the Univ. of Washington Dept. of Neurosurgery. I was fortunate to make an appointment with Dr. Richard Winn, who was the head of the dept at that time. We had a good meeting and arranged for surgery to occur in January of 1996 at Harborview in Seattle. It was a tough month and a half... waiting, waiting, waiting.
Finally, the day came. All went well. Morphine helped. After about two days in hospital I was ready to take a vacation!
But we came home. My folks were around to help in case I needed it. Each day, I became more and more lethargic. Finally, seven days after the surgery, my father found me, passed out on the floor in front of my computer. I had a doctor appointment that morning with my local endocrinologist. My Dad drove me there. I couldn't walk. He got a wheel chair and wheeled me in to the doc's office. My blood pressure was 60/30... my body was shutting down. Somebody had forgotten to communicate with my local doc about what medications I needed. It had to do with "coming down" off cortisol.... The doc estimated my body had been producing the equivalent of about 850 mg of cortisol. They had me going off of it cold turkey. I was about to die. Thankfully, the endocrinologist realized what was happending and admitted me to the hospital next door. They pumped me full of fluids and started me on large doses of cortisol, which I gradually weaned myself off of over 18 months. My skin sloughed off... I went into a mild depression. I got an appointment with a Dr. Cook at OHSU. He told me other symptoms to expect. I felt tired and sore all over... it was difficult to move my body without pain. Thankfully, that all resolved over time. To make a long story short, I got over it! I'm healthy and in good shape. I dropped the 100 lbs I'd put on with the tumor.
Looking back, it was an experience of a lifetime. I hope I don't have to do it again.
Like others on this website, in those days the internet was just starting. Information was barely available. Research was done in libraries. It consumed my time, finding everything I could about the disease.
The other interesting thing I remember was interviewing surgeons. I had a two page list of questions .... from asking about how much alcohol they consumed to their education and qualifications. I wanted somebody who did this frequently... not some guy who was going to do his first one on me! I rejected two surgeons before feeling comfortable with Dr. Winn. The one significant lesson I learned was that I was solely responsible for my own healthcare. The docs are only advisors. I had to make the decisions and therefore, I had to do the research to make sure I was making good choices.