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I am a 33 year old wife and mother of (2) beautiful daughters, ages 12 and 8. I celebrated my 14th wedding anniversary in March of 2006 right before I had my bi-lateral adrenalectomy. This was a dramatic last step of my very difficult journey. I was finally diagnosed with Cushing's Disease after about 6 years of misery.
In 1998 I gave birth to my youngest daughter after enduring a difficult pregnancy, during which I had gestational diabetes. I also had this with my first daughter, but it seemed to hit me much harder with the second. My daughter was born almost a month early and weighed 8 lbs. I was pleased she was healthy. In the months after her birth I seemed to feel fine, even better than fine. I had almost too much energy. I could not seem to lose the weight I had gained, but I was very busy with a 3 year old and an infant. Soon with an extremely strenuous workout routine and diet I lost an amazing amount of weight. But my face seemed to stay swollen. That really bothered me. I also bruised very easily. Once I fell while jogging and my body looked like I had been beaten. During the next couple of years my body would change dramatically. I went from being overly energetic and having severe insomnia to being exhausted all the time. My family considered it to be "burned out" from all the activity. My body ached from morning until night time. Often times I would come down with a cold that would last for weeks on end. I was irritable and tired all the time. I was also obsessed with my weight. I dieted but could no longer exercise because I hurt so much. I started going to a Naturopathic doctor but it was very expensive. My regular internal medicine doctor prescribed several medications including, glucofauge for my insulin, a medication for my high blood pressure and an anti-depressant. After consulting my husband, he begged me not to take the anti-depressant. I agreed. I tried to rely on my strong faith in God to sustain me. I have a very supportive and loving family so I figured that was enough to get me through. By 2002 I was a mess. My family had gone through some very stressful financial problems so I started back to work. I now had two little girls in daycare and a job. I was burning my candle at both ends and feeling more and more sick. I was always on a diet so my body was always under stress. I was also taking herbs in addition to my medications. Nothing seemed to help. Then I started the worst of it...bulimia. I would binge and purge almost daily. It was the only way I could seem to control my life. I had gone from 140 lbs to 175 lbs and nothing could bring it down. I went from being a very muscular 5' 6" size 6 to a very ROUND size 12. I had not a menstrual period since my daughter was born. I didn't even feel like a woman. My hair was thin, my skin was bad and I was fat. I had no sexual desire.
Finally in June of 2005 my medical doctor suggested I see an endocrinologist. His name was Dr. Neifing. He immediately ordered several blood tests and an MRI scan of my brain. This sounded familiar to me because in 1991 I had a pituitary tumor, a prolactinoma. It was removed by a successful transphenoidal surgery. I really had no fears. Shortly I was back in his office with my diagnosis. Another brain tumor. This time it was a macro-adenoma and it was producing ACTH which was inducing my adrenals to go non-stop. I was relieved and petrified all at the same time. My husband was devastated. He admitted that he had thought I was crazy for years and now he realized I was a very sick woman. My entire family was panicked. I was immediately scheduled for surgery in July 2004.
I chose the original surgeon that had removed my first tumor back in 1991. Since he no longer performed surgeries his associate Dr. J. was to operate on me. I met with him once and explained that I am one of Jehovah's Witnesses. We share God's view that blood is sacred therefore we do not take blood transfusions. I had a medical directive signed and ready to attach to my chart. Dr. J explained that there is very low risk with this surgery - less than 1% chances of anything going wrong. Cutting the carotid artery is basically the only major risk. Well, that is exactly what happened to me! July 13, 2004 Dr. J cut my carotid artery and I began to bleed out. My husband and father both were in the waiting room when the doctors asked them into a small private room. My husband knew at that moment something terrible had happened. Dr. J had never cut an artery before and admittedly did not know what to do. He asked that I be moved to Oregon Health Sciences University to have an artery specialist repair the damage. My husband signed the release and literally jumped on the ambulance that already had me in it! I guess they were counting on him agreeing to send me there!
The surgeons at OHSU were amazing. They had to "clip" the damaged artery and the other 3 that feed the brain were left in tact to adjust and compensate for the one that was damaged. I had some brain swelling for a week or so. I was on life support in a drug induced coma for several days. I woke up and was horrified. The news I received was that I would take the needed time to recover and undergo another attempt to remove the tumor. I went home after 7 days to recuperate. I still had Cushing's and felt more depressed than ever. My second attempt was about 6 weeks later. Although the doctors had much hope the surgery was not successful. I was presented with more bad news. Again I went home from surgery to recover. Finally the decision was made to remove my adrenal glands. In March of 2005 I went in for my bi-lateral laparscopic adrenalectomy. I knew this was a drastic solution and my tumor still existed, but I didn't care. I wanted Cushing's gone forever! I missed the person I used to be. I also had a husband and two small girls who almost lost me and needed me to be whole again. I woke up from surgery in excruciating pain. My entire right side was cut - approximately 12 inches of staples. It looked like I had been cut in half! Well, I had. There were complications and although the left side was laparoscopic, my right side endured the most evasive surgery possible. My recovery was slow and difficult. I had a PIC line and a visiting nurse came every week to care for me. I had family and friends at my house constantly. The cut was so deep and my entire right side was in constant pain. I tried not to take pain killers because they kept me in a stupor all the time. With prayer and constant encouragement from family and friends I finally began to feel some relief. I was kept on high doses of cortisol until I could "wean" down to a normal dosage.
Today, over a year later, I feel like a new woman. I deal with adrenal deficiency and constantly self-regulate my dosage. I get fatigued very easy. But I feel very close to my "old self". After my adrenalectomy I lost weight immediately. Within a few months I was 30 lbs lighter. I have maintained my weight for over a year without any effort at all. Although I never thought I would say this...I am thrilled to have my period again! Every bodily function has returned to normal with the exception of my adrenals. I take cortisol and fludrocortisone every day.
I hope my story can inspire others to never give up and to always be your own advocate in the health care system. If you don't keep going back to the doctor - especially when you KNOW something is wrong...you can literally allow yourself to deteriorate before your own eyes. I am not 100%, but I am definitely a healthy woman. My scars are badges that I wear proudly. I am a survivor. Thank you for the opportunity to share.
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