A Diligent Effort
pituitary tumor—one that causes acromegaly, also known as gigantism.)
My recovery from the operations went well, but my cortisol levels still did not normalize. The doctors putme on ketoconazole, a drug that is used as an antifungal as well as to control cortisol levels. This was not a long-termsolution but would suffice tomanage some of my symptoms until we could investigate other options.
In April of 2005, I was referred for gamma-knife therapy, also known as stereotactic radiosurgery, at the University of Virginia. This procedure focuses multiple beams of radiation on a tumor, delivering an intense dose of radiation safely to a precise area. It's a one-day outpatient procedure, but results are usually not seen until a year to a year and a half later. Patience was the key now. In the meantime, despite being on medication, I continued to experiencemany symptoms. My leg muscles had atrophied noticeably, and a bone scan revealed osteoporosis in my hip and spine—another longterm effect of the disease. To treat my thinning bones, I was started on daily shots of recombinant human parathyroid hormone.
Certainly this was not the smooth transition to graduate school that I had hoped for, but my natural interest in science and medicine helped me cope with and understand my disease. I dug into the literature about treatments and studies conducted at the molecular level. In our second year of doctoral study, we are required to pass a qualifying exam that includes writing a grant-like proposal on a subject of our choice. Happily, I was able to incorporate an investigation of pituitary tumors into my proposal, making the project valuable personally as well as academically. Each day was a frustrating struggle yet a
wonderful learning experience.
A year and a half after the gamma knife treatment, my cortisol still hadn't dropped to the level we hoped for. Since it is the adrenal glands that are stimulated by the pituitary tumor to produce excess cortisol, their removal was the treatment of last resort. In July of 2006, Dr. William Laycock, a laparoscopic surgeon at Dartmouth, performed a successful bilateral adrenalectomy. For the rest of my life, I'll have to take medication to
replace two key hormones produced by the adrenal glands—aldosterone, which regulates the body's balance of salt and water, and cortisol, which fends off infections and aids in coping with stress.
I must remain ever vigilant of my health and adjust my medication when the need arises. Failure to do so could result in an adrenal crisis, which, because of my low cortisol levels, could send me into a coma, seizure, or shock or could even result in death. I wear a medical alert bracelet and have a medical alert sticker on my car, and I also carry emergency cortisol shots in case I should have an adrenal crisis or be unable to take my medication orally.
It has been over a year since my adrenalectomy, and it is amazing, finally, to feel almost normal again. I can climb stairs without stopping, my clothes fit again, I am able to focus and concentrate, I can brush my hair without it falling out all over the place, and I can bump my leg and not develop a giant bruise. My bone density has shown marked improvement as well.
It breaks my heart when I hear of people with Cushing's disease who get depressed, even suicidal, due to the physical changes and hormonal imbalances caused by the disease. I attribute much of my recovery, though it is still ongoing, to my amazing team of doctors at DHMC, with whom I have wonderful interactions; to my efforts to be proactive in understanding the disease and its treatment; and to the strong support I've gotten from family and friends, both at home and at Dartmouth.
I cannot fathom what it must have been like to cope with such a puzzling disease in the years before Harvey Cushing elucidated its origin and advanced its treatment.
Pattin is in her fourth year of graduate studies in molecular and cellular biology at Dartmouth Medical School.
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