And It's About Time There Was Some Support For Cushing's!
My name is Ann. I am 45 years old and 5 months post-op for a left adrenalectomy.
Five years ago on a Dr. visit for poison ivy my high blood pressure was discovered. I never had a weight issue, normally about 155-160 and had the stamina of a mule. Over the next 5 years my weight steadily increased to 202 by the day of surgery. By the time of my surgery I experienced extreme fatigue and had to practically crawl up the stairs. Until I was diagnosed, I blamed myself for all my health issues and for allowing myself to get so out of shape. It's amazing how much this affects your self-esteem.
Each visit to the doctor brought another test and a new diagnosis. I behan to feel like a hypochondriac. I would joke with my parents that I had more specialists than they did.
In the spring of 2005 my health issues escalated. Tendonitis, various infections, kidney stones, low potassium, sleep apnea and the bruising. I would dread to show my arms and legs as I looked as if I was being abused. My physical told me it was probably vascular but testing proved negative. Capillaries in my eyes would break on a weekly basis, I was told it was from my high blood pressure. I got to where old acquaintances did not recognize me. I secretly worried that I had early dementia. I would get so depressed just thinking of my many ailments and tests. I was too young to be having all these problems.
Then the best thing happened. My GP referred me to a Cardiologist to address my uncontrollable blood pressure even though I was on 4 different medications. The Cardiologist immediately recommended an Internist. My first appointment was in July 2005. (I have since learned that she suspected Cushings from my first visit.)She ordered a Renal MRA for my kidneys and there it was - a tumor on my left adrenal. Then began all the tests to confirm. I remember her saying my Cortizol level was high in the first blood test. I immediately did a search on the internet and then I sat and cried. I knew immediately that I had Cushing's. December 22, 2005 it was confirmed - the greatest Christmas gift ever.
Surgery was scheduled for Jan 24, 2006. The week prior I was hospitalized with severe cellulitis in my arm that then abcessed. I was sent home with IV antibiotics which became a real challenge since my thin veins kept collapsing. I had also developed type II Diabetes and was put on medication. Finally, my surgery was rescheduled for Feb 14. My surgery was performed by one of the best surgeons in our city. He would not do the laparoscope due to rick of bleeding so I now have an eight inch incision in my abdomen. The tumor was the size of a golf ball. I spent 2 of the 6 days in ICU due to my blood pressure dropping, kidneys not functioning and fluid in my lungs.
Presently, I have lost 35 pounds with little effort. My blood pressure is controlled with one low dose of medication. I am on Prednisone for the Cortizol replacement. My greatest challenge has been the steroid withdrawl symptoms caused by the tapering. This has not been a fun experience, but necessary to try to get my other gland to start working. i have definitely adopted the practice of "going with the flow" and taking each day as it comes. I am learning to have patience since this can take a very long time. Even though I have a ways to go, the positive results so far get me through each day.
For anyone going through this, learn as much as you can about the disease. You have to advocate for yourself since most doctors are unfamiliar with it. On one visit to the ER for an Adrenal Crisis, I became so frustrated having to explain to the medical professionals why I was on a replacement medication and why I was experiencing steroid withdrawl symptoms; they were clueless.
Thanks to everyone for sharing your stories and for the ones I have e-mailed. Unless you have been through this you just can't understand the impact this disease has on a person mentally and physically. Thanks for giving hope!
If you would like to chat please e-mail -
I am now 1 year post op from a left adrenalectomy. I continue to wait for my other gland to wake up. My last blood work did indicate that my Pituitary had begun to function again, so hopefully it will get the message to the other gland to start working. The first 7 months were very difficult while my body was adjusting to having less Corizol, but in retrospect, it has been so worth it. The weight literally melted off and I am within five pounds of what I consider my pre-cushings weight. The other health issues have gone away, only on a mild blood pressure dosage. I have been able to wean to 7 mg. Prednisone (for Cortizol replacement until other adrenal is working).
Anyone going through recovery or pre-surgery, please feel free to contact me - the support I received from others during my recovery and being able to communicate with others going through the same thing has been so encouraging.
In June 2007, 16 months, post surgery, my right adrenal finally woke up and i was able to go compltetly off the Prednisone. Ever since, I have had much pain in many of my joints. I have also spent two months in physical therapy to strengthen back muscles thought to have been weakened due to the Cushings.
I am back to my pre-Cushings weight with friends and family stating I look 20 years younger. It was a very long, slow return to normal, but so worth it. I still struggle with feelings of lfeeling like I lost out on 5+ years of my life.
If anyone has been through the similar aches and pains after recovery, I would love to hear what may have helped. For anyone else who needs a listening ear - please write.