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Lacy C's Story...

I had all the symptoms of Cushings but was not diagnosed for years. I did not know anything about this disease until July 05 when about the eighth doctor I saw did a 24hr urine cortisol test (just to rule out that my problems were not Cushing's). She was a friend of my sister, and I went there to please my sister and maybe get on a diet or get healthy. I had also had a broken foot that would not heal and that was the last straw. She was from North Carolina and we had only a few days to be seen and do labs. She set up a diet with meds and gave prescriptions for depression. She was very aware because when I wanted to refuse any prescription help for my weigh or problems and blamed myself for these things, she helped me to understand that maybe things were stacked against me and I would need assistance to get through things. She also told me that maybe some of these problems were out of my control. Thanks Dr. Kati Dessauer for taking the time.

I returned to New York last summer thinking I may get through things if I worked real hard and also with the help of these new prescriptions. It was not even a week after my return and I got word that my cortisol level was quite high and I needed to see a endocrinologist. I visited an endo in Cooperstown and went through ALL the tests. She referred me to the team at Mass. General. It was a 5 hour drive and I was quite anxious.

I was pretty sure I had a pituitary tumor but I wasn't sure if this trip the would be surgery or what. We visited with Dr. Swearingen about 15 minutes. He thought he could see through the MRI photos where the tumor might be located but wanted to do a procedure call Inferior Petrosal Sinus Catherization. I did the IPSC that next day and after a few hours in recovery we drove home. Dr. Sweargen called a few days later and said he would like to do the surgery in a few weeks. So surgery day was set for March 22nd (2006). I only had about two and a half weeks to worry about brain surgery.

I am a wife and a mother of two girls (Kendra 11 and Hailey 7) so it took just about that whole time to get things ready, finding people to bring and pick up my kids from school and a place to stay at night, packing their clothes and writing lists and notes. Well after that was complete it was time to make that trip to Boston. My husband has been with me through every step and now had to take a week off from work without pay to help me through the next and hopefully final procedure, a transsphenoidal to remove a tumor on the pituitary gland. We got there one day early to do the pre-op stuff. My parents insisted on being there too so Randy had some support too. We had a nice dinner in downtown Boston and returned to the hotel to sleep, NOT. I don't think I slept for more than 45 minutes.

We walked to the hospital from our hotel, which made things very convenient. I went in for the four hour surgery. When I woke up I remember really feel a sore throat, I had to stay in recovery for a few hours before I could see my family, but yeah it was finally over. When I got to my room I felt pretty good and was very happy to see everyone! My Pastor and assistant Pastor woke up very early that morning to drive and be there too, it was a nice feeling to be so loved. I only stayed in the hospital a couple days and was discharged. I had headaches and a little nausea but I was happy to be pass the surgery thing. My husband and I stayed at the hotel for five more days because we live quite a ways if anything were to happen.

On that following Monday I had a visit with the doctor and was released to go home. The people around us have been wonderful! We had received many offerings to help us. When we returned home we had meals prepared for us. I had such great support in my family. My sister came to my home from her place in NC to take care of me. I was making good progress when I started getting a terrible pain in my side. I went to a local hospital to find out I had kidney stones. That was not fun. When I went to the specialist he said to drink fluids, and my sodium levels said I should be fluid restricted! I somehow passed the stones a few days later.

I learned a lot by this site. It seems a lot of people have kidney stone trouble with Cushing's. I am now on my third month after surgery and still feel many aches and fatigue. My local endo is not very reachable and I am not sure if she understands my complaints so I am always referring to this site for answers. I still take hydrocortisone and have a plan to wean off of it this summer. I hope this finally work out this disease has been a nightmare but the blessing I have received through it have been Greater!

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