And It's About Time There Was Some Support For Cushing's!
Yesterday, I received the good news that my pituitary tumor is finally gone. I felt that this was a good opportunity to post my story to prove that there IS a light at the end of the tunnel. Typing this is hard; I can't believe the disease has actually ended.
Two and a half years ago, and about six weeks before my wedding, a very close friend of mine passed away suddenly. I started to feel overly anxious and "off," and went to go see my general care doctor. The visit started off with a scare. Somehow, my blood pressure had shot up to Stage Two hypertension seemingly overnight. At the time, I was 23 years old, I exercised, didn't drink or smoke, had no history of high blood pressure in my family, and was 5' 6", 123 pounds. Yet, my blood pressure was through the roof. My doctor told me it was probably the anxiety of planning my wedding and dealing with my friend's death, but "just to be on the safe side," he took me off of birth control and told me to come see him in a few months after things had calmed down.
Three months later, I went to see my doctor again. My blood pressure had gone up even higher. Concerned, my doctor sent me to a cardiologist. Around this time, I began having panic attacks. When I went in to see the cardiologist, I became so scared and anxious that I almost passed out. The cardiologist did not know what to do, and ran an EKG and an ultrasound on my heart. I still remember sitting in the cardiologist's waiting room, feeling my heart beating through my chest and looking around at all the other patients, none of whom must have been younger than 65 or weighed less that 250 pounds. I didn't understand what was wrong with me, and I felt scared and alone.
All tests showed, strangely, that my heart was 100% normal. "You just have essential hypertension," the cardiologist told me -- blood pressure with no cause. She began to prescribe me literally every type of blood pressure medication, and combination, possible. Of course, since these medicines didn’t treat the real problem, nothing worked - and I began to get numbness in my legs, complete loss of feeling in my feet, and exhaustion. Frustrated, I visited another cardiologist, who agreed with the diagnosis and continued the medication. Anxious, angry, and starting to feel severely depressed, I started to search online for alternative causes of high blood pressure. I found information about Cushing's disease, and pituitary tumors. Feeling at the end of my rope, I asked my new cardiologist to run an MRI on me, just to rule everything out. He told me, "Oh, that's so rare, Cushing's would be next to impossible. You don’t need an MRI." I wish I had fought for myself, and this test.
At this point, anxiety attacks were hitting me almost every day. I usually work best under pressure, but at work I started to lose all focus. I was making big mistakes while doing easy, simple tasks -- and anything even slightly difficult completely overwhelmed me. My year end review was abysmal. "I just don't know what's happened to you, Anne," my supervisor told me. I was getting more and more depressed. Not only did I not feel like myself, I didn't look myself, either. I gained about 35 pounds in two months, all around my stomach. My face, which had always been pretty narrow, became round and puffy, and my skin broke out all over. My neck seemed to disappear, and I grew a fuzzy hump on my back. I was so self-conscious. Every time I looked in the mirror, I could see whatever was wrong with me taunting me. Still no answers, and despite all the medication (at this point, I was taking about 7 different pills for anxiety, depression, and blood pressure), no results.
Over a year after my first doctor's visit, I remember waking up one morning and feeling very, very strange. My legs had swelled up, and I just felt like something was wrong. My husband took me to urgent care, and I had a blood test. We were waiting in the lobby when a doctor came running out. "Ms. Diaz, we need to take you to the hospital." What???? "Your blood tests show your potassium levels are dangerously low. Your heart is going to stop." I became dizzy, and my husband stood by as paramedics tried to hook me up to an IV and load me into an ambulance. I was fighting back, because I was so confused. What was happening? I didn't want to go, I was scared and upset. I was crying and the doctor told me, "Miss, unless you want to die, you have to be strong right now." I think the shock of his words pulled me back into reality, and in the emergency room I was pumped full of potassium. Doctors were coming in and out, taking blood and measuring all my levels. This visit to the ER saved my life in more ways than one. One of the ER doctors ordered a simple cortisol blood test, and saw that my cortisol levels were 300 -- well above the normal 15-25. He rightly diagnosed me with Cushing's.
After numerous more tests, MRIs, CT scans, etc., it was determined that I had a pituitary adenoma and needed neurosurgery. The only problem was that my tumor was so small, it was barely visible on the MRI. To truly determine what side of the brain my tumor was on – and to make sure that the tumor really was there!-- I underwent an outpatient procedure to draw blood from my brain. After that procedure, I knew I could go through anything!! My neurosurgeon, Dr. Sandeep Kunwar, was amazing -- he was so calm and confident and explained everything about the procedure to me and my husband. I had surgery on July 5, 2006, and it appeared to go really well. I recovered pretty quickly, and my cortisol levels finally stabilized around 17. I lost all the weight I had gained in about three months, and my face was back to normal. I felt and looked like myself again. The panic attacks stopped, the depression ended. I felt I had undergone a miracle in surgery.
Unfortunately, a routine check-up blood test revealed that the tumor had returned in April of 2007. I started to see a few of the signs returning-- my skin began to break out, and I gained a little weight around my face. My blood pressure began to elevate, although thankfully it only got up around the high end of normal as opposed to the stage 2 hypertension I was experiencing a year ago. Dr. Kunwar recommended that I undergo gamma knife radiation therapy to get rid of the tumor for good. MRIs still could not detect the tumor, so a second neurosurgery wasn't an option. I had radiation on June 30, 2007. I am so thrilled to report that just two months later, my cortisol levels have returned to normal, dexamethasone suppression tests are normal, and I appear to be 100% cured.
In many ways, Cushings helped me to get my life back. I was unsatisfied with work, and have since left my job to pursue my dream of graphic design. I used to be incredibly self-conscious even without the disease; now, any day of looking like me is a blessing. I was petrified of doctors; now I make appointments to see them without a second thought. I have come to appreciate myself and my health so much. Everything has been put into perspective -- I'm back in touch with friends I lost during the worst times of the disease, my relationship with my husband is better than ever. I realize my immense strength, and also have so much more confidence in myself and my relationships.
I want to tell everyone suffering with this disease: Trust your body. If you think something is wrong, it is. Fight for your health, and yourself. And be confident that Cushing’s IS curable. I’m proof. I would love to talk to anyone who needs any type of support. You will fight this, and you’re not alone.
