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My name is Janet and I would like to share my Cushing's experience with you. In July of 2003, just before my 59th birthday, several events occurred in my life that were very emotionally upsetting. After handling each of them to the best of my ability, I found that several months later I seemed to be experiencing moments of anxiety. These feelings gradually occurred all of the time. After having no success in dealing with these feelings I consulted with my family Doctor in September. She suggested that I start on an antidepressant. I agreed and about ten or twelve weeks passed and I finally started to feel normal again. In fact, I would say that I really felt great!
| With Cushing's |
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| Normal Appearance |
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The following spring of 2004 our oldest daughter got married and decided to have a small wedding for the immediate family only. At this time I noticed that my regular clothes were not fitting. I normally was a size 12 and my height is 5' 8". I managed to find something in a larger size. After the wedding I still continued to feel "great" and I can remember thinking that I would never go off of the antidepressant. I assumed that it was making me feel "up" all of the time. I found out later that this exuberance and great feeling was sometimes exhibited in Cushing's patients.
Summer came and passed and in the fall of 2004 I noticed that my neck was getting fat and I was putting on more weight. Meanwhile, my personality changed showing signs of stubbornness and aggressiveness. By the time Christmas came I had gained another ten pounds. With the approval of my family Doctor I decided to wean myself off of the antidepressant thinking that this was making me gain the weight. She too, was concerned about my weight gain so she referred me to an endocrinologist at a local hospital. After an office visit there, I was immediately referred to a group at the Hospital of the University of Pennsylvania (HUP), in Philadelphia. I was able to get an appointment with Dr. Kolin Hoff and on my first visit he told me that I looked "very cushingoid". I had no idea what that was but I was happy to start with testing. After weeks of testing with 24 hour urine collection and night time saliva tests, my results never really came up positive. I was still gaining weight. By June of 2005 I was up to 225 pounds having gained 70 pounds. I had shortness of breath and my blood pressure was off the chart. I bruised easily, had wounds that took months to heal and had purple stretch marks on my body. I had a hump on my back. My ankles were always swollen. I had never been fat in my life and no one in my family had a weight problem. An MRI was scheduled and a tumor was found on my pituitary. I remember hoping that they would find one and sure enough they did. It was not the normal small size. It was larger and was pressing on my optic nerve. After having visual problems my surgery was immediately scheduled. On October 5, 2005 Dr. Kevin Judy a neurosurgeon at HUP operated. A transsphenoidal resection was performed successfully. The morning after surgery I had another MRI showing that all of the tissue was removed. I was thankful that everything went so well and prayed that it would never grow back. I immediately lost ten pounds while in the hospital. After five days I returned home. My blood sugar was borderline diabetic so I carefully watched my diet. My appetite was very poor after the surgery and I was nauseous for six or seven weeks. I started to exercise slowly and felt pretty good mentally until about eight weeks after surgery. I started to feel very flat and depressed. I had no ambition to do anything. I found that I could not get out of bed in the morning. I could do nothing ... I couldn't wait for the end of the day to come because I could go to bed. Sleep was my escape. I (who could do anything before all of this) could do nothing. I couldn't drive into Philadelphia for my appointments. I couldn't think or concentrate to do much of anything. Dr. Judy warned me that after the surgery I might feel flat for some time. I had been on hydrocortisone for about 16 months after surgery. Gradually, after about fourteen or fifteen months, I finally started to feel better. By June of 2006 I had lost 100 pounds. Little by little I started to feel like I wanted to do things. I was no longer a diabetic and no longer needed blood pressure medicine. I started to enjoy being with my grandchildren. I was finally able to cook a meal and do normal things. Eventually I returned to my energetic self and back to enjoying life.
Every day is a gift. I feel very fortunate that my prayers were answered and that my family and friends were there for me. My husband and three daughters never gave up hope. Their continued support and encouragement and my faith in God gave me the strength I needed. I will always be thankful. I have been blessed.
Don't give up..... be determined, be positive, keep your faith and you will recover. Good luck! Please feel free to contact me if I can help.
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