In 2010, after retiring from being a teacher and librarian, I rewarded myself with piano lessons. I had always wanted to learn to play the piano, but after a couple of years of taking lessons, I noticed that my eyesight was not as sharp as it should be. I tried trifocals. Finally, I was so depressed about my inability to read the music that I quit taking lessons. Later I noticed that my stomach was getting huge, and I hadn’t really changed my eating habits or anything.
In April of 2013 I started spending about two weeks per month out of town to help my sister who was diagnosed with stage 4 lung cancer. She was a hoarder, had 9 cats and her house was a nightmare. All through 2013 and 2014, I cleaned and organized and did my best to give her a nontoxic, clean environment whenever I could drive the 3½ hours from Springfield to Tulsa. Without the help of neighbors and friends, it would have been impossible to get an accurate diagnosis and treatment plan for her cancer, and I’m sure she would have perished under dire circumstances. Anyway, maybe that was the source of some stress for both of us. She passed away at my house on Thanksgiving, 2014, and immediately afterward, my symptoms blossomed.
The moon face and round belly were obvious by Christmas time and my attitude was crass and antagonistic. I went to my doctor with different complaints, but he didn’t hear me. In March I asked him to test me for Cushing’s. He STILL didn’t hear me, so on April 7 I showed him how I felt. I drew a picture and labeled my symptoms. He ordered some tests of my gastro-intestinal system, heart, lungs, liver, gall bladder, etc. and all the tests came back negative. They were, of course the wrong tests, but what did I know?
Later that month, April 2014, I met a couple of girlfriends for dinner. They were shocked at my appearance. We also had an adversarial encounter over whether fiber in the diet was actually necessary. I was pretty mean sounding! I am lucky to have such good friends, because they insisted that I go to the Emergency Room.
Well, I did. My blood pressure was through the roof stroke-level and my blood sugar was very elevated. My potassium level was very low and one of the ER doctors, Dr. Arnce, saved my life! He ordered imaging tests (CT and MRI) and an EKG and the next thing I know he hooked me up with an endocrinologist. Between a cracker-jack endocrinologist (Dr. Bonucchi) and a fantastic neurologist, (Dr. Mace) and an infectious disease specialist (Dr. Trotman), and others, I’ve had TWO surgeries since June 9, 2015.
I was at home after the first pituitary resection, very weak but doing OK by myself with the help of my brother, some friends, and a couple of neighbors. I was beginning to feel like a burden on friends and family since I couldn’t always feed the chickens and carry fresh water to them or walk my dog. I couldn’t always chop up salad or veggies or carry out plans for the day. I gave up driving for about 3 1/2 weeks; thank goodness for pizza delivery! I depended on a friend to take me to doctor appointments which I felt was a burden on her even though she said she wanted to help.
I had an appointment and confirmed with her that she would pick me up. When she knocked on the door I was passed out on my bed. I thank God she let herself in! There were overturned chairs in the living room and there was blood on the wall. I was completely out of it and near death. She called 911 and the ambulance transported me to the neuro-trama center of Cox South Hospital. I had contracted an infection, meningitis, in my brain. My neurosurgeon hooked me up with an infectious disease doctor, Dr. Trotman, who started treating me for meningitis and as soon as I was stable, I was sent upstairs. Unfortunately, my nose started dripping spinal fluid. We had to do the whole fat graft over again, which was pretty bad news and my entire pituitary gland was removed.
I am now about 8 months past my second surgery and still recovering. I am doing better all the time but still experience some of the common symptoms such as weakness in my extremities, insomnia, and depression. I am so thankful that I have good friends, a prayerful Mom and an attentive brother. I don’t know that my eyesight will ever be 100% and I don’t even know what the future holds for me or how independent I can be.
My endocrinologist, Dr. Bonnuchi, is managing my diabetes insipidus, the high blood pressure, and other hormonal imbalances. Maybe one day I’ll get back to being myself, or perhaps I’ll just have to adopt a new normal. I don’t know, but life certainly isn’t boring! I have a lot to learn about how to keep a journal and take the medications indicated. I don’t like having such a responsibility, but that’s just Tom-boy me. I would rather be playing with a router in the shop than keeping track of my blood sugar. For today, though, I need to pay attention to the cuff and meter readings and be grateful that they are available!
I would really like to hear from others who have their entire pituitary gland removed!
Member number: 152866
Newsletter: Spring, 2016