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My Cushing’s Story – MG(R) Eugene F., US Army
There is interest in the CSRF on recovering from the Cushing’s experience. Each of us is unique in these experiences but they are very much similar.
In my early sixties after a lifetime of good health I began having many symptoms familiar to all of you. The path of the disease was a slow downhill one. I saw several doctors and received several possible diagnoses.
On my 45th reunion in 2001 at West Point I could hardly participate. I did contribute to a religious gathering at the Cadet Chapel which honored our fallen. As I looked at those gathered and said a prayer for the dead I wondered if I would soon follow. My appearance probably caused others to feel the same about me.
On return home I had an appointment with a different Internist. In about 15 minutes after some checks he told me that he had seen these symptoms (the roll around my neck) before and his advice was to see an endocrinologist because in his opinion I had Cushing’s. Wow and off to the computer.
In rapid order I did see a local doctor, then contacted NIH and asked to join an ongoing Protocol Test designed to simplify finding the location of a tumor. I was admitted and the location of the tumor was found in the Pituitary Gland. By a stroke of luck an opening in the schedule appeared and I had the surgery at NIH less than three months after meeting with the Internist.
Both before and after surgery our cat, “Sweetie Pie”, stayed with me all the time. She provided warmth and affection. She’s gone now but never forgotten.
It was a tough surgery for me and I was sent for a day to the ICU and then remained in the hospital from 12 DEC to 26 DEC 2001. Then home to enter the “recovery” period.
All those symptoms started to disappear, many very slowly. I spent almost two months recovering from the operation mostly in bed. It took a while for the brain to settle down. Then my wife started me walking every day, several times. At first I walked in the house, then to the driveway and finally on the street. I hated the taste of food and mainly drank cans of a nutritional supplement. I lost 45 pounds very quickly. One day I walked into the kitchen and felt like eating a potato chip. I ate it and slowly my appetite returned. On a walk in May I turned to my wife and told her that I felt different. My hormone system had restarted. I began cutting out the pain killers and the hormones, it took half of a year. Cutting back on the hormones was difficult. Here my Internist scored again. He regulated the dosage change trying to keep me the least uncomfortable. I had become addicted to the pain killers and it was not easy to give them up. Eventually I arrived at a time with them both over. It took about three months.
There were issues along the way. My bones were weak. I had osteoporosis and took medication for five years and still take calcium and vitamin D today. The osteoporosis is now osteopenia and I’ve had NO broken bones in over ten years. I had a frozen shoulder that needed attention, and I discovered I had Raynaud’s syndrome in two fingers. In 2003 I had a stent placed in a heart artery, surely a result of too many lipids during the Cushing’s years. I had a bout with kidney stones. To my delight my libido returned.
There came a time that I could no longer separate Cushing’s from aging process. My original goal was to return to my pre Cushing’s self. That was foolish. I changed my goal to being the best I could be.
At the end of 2005 my wife and I celebrated our 50th Anniversary. We walk almost every day.
I gained three heroes out of this experience, my wife, the NIH Team and my Internist. I was served very well. The tumor was removed and I have experienced no return. I have attended many high school graduations and several college ones. No great grand babies yet, but they will come. I travel often, write, and consulted up to two years ago.
When we first found I had Cushing’s I adopted the mantra “Treatable, Curable”. It lifted me up for many years. I share it with all of you. My mantra today is “Keep it Moving”.
Newsletter: Spring, 2013