William (Bill) P.

William (Bill) P.

Bill’s Story

I was born and have lived all of my life in the Halifax metropolitan area of Nova Scotia. Although I am currently retired, I worked for 37 years as a newspaper printer. In addition, I am also a retired volunteer firefighter having thoroughly enjoyed the experience for 36 years. I served as Fire Chief during my last 10 years as a volunteer firefighter before retirement. I currently reside in Williamswood, Nova Scotia, which is a suburb of Halifax. I am married to my wife, Linda, and we have two grown children and two grandchildren.

I was diagnosed with acromegaly in early 2003. The diagnosis part proved to be a challenge for my doctors. I also suffer from hemochromatosis (my doctors call it double trouble), a condition that results in too much iron building up in my body. It has similar symptoms to diabetes, which had to be ruled out before going forward. For some time, I was bothered by a sharp pain behind my right eye that was becoming more frequent. My family doctor referred me to an eye specialist who could not find anything wrong and suggested I may have arthritis in my eye sockets. While this was going on, my hematologist and family doctor received results of a blood test that showed a higher than normal level of IGF-1 in my blood. Upon conferring with my family doctor, he suggested that I should have an MRI to see what the cause might be. He proceeded to book the MRI; however, the appointment wasn’t until almost a year later. As my symptoms were getting worse (fatigue, neck and hands were becoming larger than normal, constant clearing of my throat) and I still was bothered by the sharp pain behind my eye, I requested my family doctor book me an MRI at a private MRI facility that had just opened in our area and I would pay for it myself. My family doctor said he would try one more avenue before booking the private MRI.

He contacted an endocrinology clinic in Halifax and in a relatively short period of time I received an appointment at the clinic. There, I met with the clinic doctors and nurses. As soon as the doctors saw me and how my looks had changed, I felt they knew what was wrong. A series of tests and an MRI were ordered, of which this time there was not a long wait for an MRI. When results from the tests came back, they confirmed I had a tumour on my pituitary gland.

At my next clinic appointment, I met with a surgeon to discuss the results of the tests. He explained what the surgery would entail, and set a date for the surgery. He also ordered a series of MRIs, including one on the morning of my surgery. As luck would have it, my surgery was bumped down the line because of an emergency. During the wait time for my new surgery date I had to have an echocardiogram, which showed my heart was starting to enlarge. I finally had the surgery in late June 2003.

The surgery was a bit of an experience. In January 2003, I had gallbladder surgery and following the procedure the anesthesiologist informed me that I was a very difficult intubation and that he was placing a letter on my chart to inform other doctors of that problem. By the time my June surgery to remove my pituitary tumour came around, I had to meet with another anesthesiologist who informed me that I would have to be intubated while still awake because of the small size of my throat due to my enlarged neck and tongue. This procedure was not very pleasant to say the least. After a period of time they did get me intubated and the next thing I remember was waking up in recovery. A while later, I was transferred to the step down unit where I remained for a few days. During this time, I was awakened every hour and given an eye chart test. Once the packing was removed from my nose, I had a further complication; the area where the probe entered my skull did not seal properly and I was leaking spinal fluid. After a number of days of leaking fluid without it sealing, it was decided that a spinal tap was necessary. Due to the amount of spinal fluid I lost, the first procedure did not work. The second try also did not work. On day three, when the doctor in the X-ray department performed the procedure, it finally worked. I remained in the hospital for seven more days until the leak finally sealed and the tap was taken out.

For the first six years after my surgery, I did not require any additional medication to control my IGF-1 levels. My blood test in 2010 indicated a slightly elevated IGF-1 level, and a somatostatin analogue was prescribed. This medication did not work for me. It controlled the IGF-1 but the side effects were such that I could not tolerate it. After an oral glucose test, my endocrinologist prescribed a dopamine agonist in a pill form, which my body seemed to tolerate. In 2012, a blood test indicated that the dopamine agonist was not controlling my IGF-1 levels, so I stopped taking the medication. I will find out in May what the next course of action will be. In addition, I started sleep apnea therapy, which seems to be helping me. I continue to be monitored for changes in my condition and realize that it will be this way for the rest of my life.

Throughout my entire diagnosis, my doctors were saying the word “acromegaly” but I was not fully aware of what it was. During my time in the hospital, my sister-in-law, who worked in the hospital, printed me off information she found on the internet. There was not a lot of information there at the time. What the internet information allowed me to do was to ask informed questions to my doctors, which were always answered to the best of their ability. We are very fortunate to have an excellent clinic and staff who go beyond the call of duty to keep us informed and guide us in the ongoing care that is required. We now have a support group here in the Maritimes. Twice a year, we get together to share our experiences and receive more education on the disease. All newly diagnosed patients are encouraged to attend. During my time with the group, our membership has almost doubled and we continue to learn more about acromegaly.

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Check out the true-2-me guest editorial on treatment Considerations for Acromegaly

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