My battle with Cushing’s follows the basic pattern. My problems began long before I had ever heard of Cushing’s. I had a pretty good life…no, it was a GREAT life – married with 4 healthy active children. I wasn’t exactly a stay at home mom but my work always involved my children. I stopped volunteering at our children’s pre-school when our youngest was only 2. That’s when I moved from being a volunteer to becoming part of the pre-school staff. When Cari graduated to Kindergarten I became the administrator of the after-school care at her school. During the summers we would spend our vacation at a camp in Wisconsin where my husband would volunteer as a camp physician. While the children were occupied with camp activities I started working in the camp office to pass my time. Before long I was offered a full time job working at camp during the summers and in the Minneapolis office during the remainder of the year. Each summer the kids and I would move to camp and my husband would join us when he could. I was considered in fairly good shape, tall and if not thin then at least well proportioned.
I was at camp when I first noticed that it was becoming more difficult to ride a bike. I typically rode into town, a short 3 miles, almost daily and also biked through the campgrounds as part of my daily tasks. At times my feet and hands would tingle or feel numb, nothing to cause any great concern. I was always tired, felt weak and became very clumsy. My skin was thinning out as well, tearing at the slightest bump. Somewhere, somehow, I mysteriously gained weight. I tried all kinds of diets and finally went to my doctor who reluctantly gave me diet pills, with the stipulation that I go to Weight Watchers. I knew Weight Watchers worked, I became a member after the birth of our third child and lost all of my pregnancy weight and more, achieving the lifetime member status. I knew the program and played by the rules but for some reason the scale wasn’t moving downward. I know the doctor thought I must have been cheating!
It was then that we made our first trip to the Mayo Clinic in Rochester, Minnesota. They tested me for Cushing’s. The tests all came back normal but my symptoms persisted and worsened. I continued to lose muscle strength and my skin was paper-thin. I was so swollen that I couldn’t see my feet. My skin would bruise and tear easily, so much that I always looked like I had been in a fight or fallen down a flight of stairs. One morning I woke up in extreme pain and discovered that I could not walk. Somehow I had broken my pelvis. There was no explanation; no trauma, no brittle bone disease, no falls, but that break confined me to a wheelchair. I spent 5 painful years in a wheelchair. During that time I attended an outpatient pain clinic where the physician in charge was a strong believer in medication. It wasn’t long before I was a full-fledged morphine addict. I was taking 360mg a day and using Percocet and Vicodin to “take the edge off”. I was in bad shape and no one was helping me. My next stop was an inpatient pain clinic where I was told I needed to be drug free. Withdrawal is not pretty! That was in April 2000. I was determined enough to leave my wheelchair for a walker. The pain was still there but I chose to hurt standing rather than to hurt sitting in the wheelchair.
Because I was taking all sorts of medications, at one point my liver shut down. I became so jaundiced that little kids would point and stare at the yellow/green lady. Combined with the moon face complete with slits for eyes and multiple bruises, I was quite the picture!
Somewhere in this story my eldest daughter was surfing the net and saw an article about Cushing’s that caught her attention. She called me all excited because the picture in the article looked just like me. I had all the symptoms and the story seemed to fit. I was being seen at Hennepin County Medical Center where they were also trying to find a reason for my troubles. The breaking bones seemed to be a focus. Bone scans showed a normal density so why were my bones cracking? It was in the Bone & Renal Clinic where Dr. Charles Smith insisted I must have Cushing’s and referred me to their Endocrinology department. After months of testing we had the positive laboratory results to confirm the diagnosis of Cushing’s. Finally an MRI reveled a pituitary tumor. Next step was to find a neurosurgeon who would operate.
I had my first transsphenoidal pituitary surgery in August 2002 at the University of Minnesota. It was like the devil was pulled out of me. I felt better immediately but the weight loss just wasn’t happening. I was up to 280 pounds! In September 2003, I had a gastric by-pass. I lost the weight and was beginning to feel more like my old self. The Cushing’s symptoms were disappearing and I was well on my way to recovery.
Things were going great until 2006 when I started gaining weight again and just feeling bad. I was sure the Cushing’s was back. This time it was much easier to make a diagnosis and I was sent to the Mayo Clinic in Rochester, Minnesota for further evaluation. There was definitely another pituitary tumor. I had a second pituitary surgery (transsphenoidal) on March 15, 2006. I didn’t feel any great changes after this surgery but the doctors wanted to see if I would improve with time. After waiting a few months with no improvement my suspicions were confirmed: I still had Cushing’s.
I returned to Rochester for bilateral adrenalectomy on June 28, 2006. This time the Cushing’s was definitely cured. The procedure was done laparoscopically so my recovery was going well until I developed an abscess. On August 16, 2006 I had an abscess the size of a cantaloupe removed at a local hospital in Minneapolis. While thinking what else???? I developed swelling and pain in my left hand. Just to be sure it wasn’t a blood clot I was sent for an ultrasound and what did they find?? A blood clot, probably due to one of many IVs. I was placed on Coumadin and just had to wait out the course of treatment. In January 2007, I returned to Rochester for a left abdominal hernia repair. I was finally finished and on the road to good health. I was walking and exercising with the intent of being fit enough for a trip to Israel.
We made the trip to Israel in November 2006. It’s not an easy trip with uneven pavement and lots of walking, climbing and getting in & out of the tour bus but I did fine. Little did I know that I was destroying my feet. I started having severe foot pain in January about a month after we returned home. A visit to my doctor ended in yet another hospitalization. I was diagnosed with bi-lateral Charcot’s Foot. This is a condition generally seen in people with diabetes where the bones in the feet break. Because I was not feeling pain (due to my neuropathy) I continued to walk on my broken feet until the pain caught up with me. I was told to keep off my feet until they stabilized and then we would discuss surgery. I was back in the wheelchair!
In May 2007 I had my left foot reconstructed – but not without complications. I was still experiencing slow wound healing and there were signs of an infection. I went back to the hospital for wound cleaning and a wound vac, a pump that had tubing from my foot to a machine that sat under my wheelchair. The machine (we named “Mr. Bean” because of the charming noises it made) pumped liquid out of the wound to promote healing from the inside out. I was really a sight because I had fallen out of my wheelchair and broken a finger. And again because of the poor wound healing, I needed surgery to pin it back in position. So the orthopedists did some hand surgery at the same time. I had my hand in a soft cast and my wrapped foot raised in the chair.
I had a total knee replacement in December 2007, and after surgery was given the okay to get up and walk with my new foot and new knee. I am happy to report that I am walking without any aide. My feet are still painful and I cannot wear shoes. I was expecting to have my other foot reconstructed but my doctor has changed his mind. The risks are too great and considering all the surgery I’ve had in the past few years he feels I should just wait and see what happens. That works for me! I do need another knee replacement but I am Cushing’s free, walking (I can only wear Teva sandals even though we live in Minnesota and have cold, snowy winters). I am driving and enjoying my independence and freedom. I remember seeing one physician who told me there was nothing she could to for me and I would never walk again. I’m grateful I didn’t stop there! I am grateful that we pursued and found the specialists who knew to look for a diagnosis of Cushing’s.
When I look back and see how sick I was and how hopeless it all seemed, I feel extreme gratitude for my health and for my life. I am also extremely blessed and thankful for the support of my family and friends. Cushing’s is not only hard on the patient but on the people who are trying to be helpful and loving throughout the changes, both physical and emotional.
Newsletter: Spring, 2010