![]() |
![]() |
![]()
I was diagnosed in 1997 with Cushing's Disease after about six months of symptoms. I had my first transsphenoidal surgery in Hartford, CT. Although no tumor showed up in the pathology report, I was cured for a year. I was great and so thankful to be cured. Then I went to give blood and my blood pressure was up. I went back to the endocrinologist, and sure enough, my cortisol levels were up again. This time I decided to get the best available care instead of what was convenient to home. I embarked on a nine-month campaign to get into the National Institute of Health. I had surgery in May of 1999. I spent three weeks in the hospital and it was successful! NIH recommended traditional radiation as the next step.
Following treatment, my new endocrinologist gave me Nizoral and other drugs to block the cortisone. The high doses were causing liver damage, so I opted to put an end to all of it and have an adrenalectomy. The laparoscopic surgery was performed at UCONN Medical Center in October of 1999. Two months later I traveled to the University of Virginia for gamma knife radiation to prevent Nelson' Syndrome. I was out of work until January of last year and am now working two days a week.
My biggest complaint now is the amount of sleep I require (10-12 hours). I am not happy with my weight either! I have 15 pounds above my desired weight. I have trouble remembering names of people, places, plants, etc. I have trouble distinguishing what is disease-related and what is middle age related! (I am now 50!) I do consider myself to have a fairly normal lifestyle now. I can do anything I want, just in limited doses! I'm taking hydrocortisone (20mg in the morning, and 5 mg in the afternoon), along with florinef, premarin, synthroid, medoxyprogesterone, and DHEA. How have I coped though all of this? With the support of wonderful family and friends, church, a good disability plan, meditation, and a sense of humor. I also try to help others going through this disease!
|
|
comment on this page
email this page
print friendly
