[This is the second post of a multi-post series. Part I was posted yesterday. ~Robin]
by Vivant Malgré*
First of all, the Cushing’s community: The Cushing’s patient community is remarkable. Sure, we can be cranky bunch at times (can you say too much steroids?), but the amount of high quality information to be learned from the collective community is astonishing. In my last job, one of my employer’s specialties was implementing knowledge management systems. I was at that time skeptical. I continue to be amazed by the depth of knowledge possessed by the members of this community and how effectively it is shared. My experience is that I would be more likely to obtain accurate information and advice based on the most recent research from a long term member of the Cushing’s community than from an endocrine fellow at NIH or any of the research institutions I have been at. The Cushing’s community has pointed the way to innumerable studies, reference tools and practical experience. And for that I am wholeheartedly grateful.
The Cushing’s community also provided encouragement at critical moments. I remember one person, very early on, passing on the advice of not seeking help in a serial fashion from endos – don’t see one doc for six months, give up, see another doc for six months, move on, etc. Keep your options open until you have actual help in hand – even if it means seeing multiple doctors at the same time. That advice probably saved my life and most certainly my livelihood. Folks steered me to which doctors were helpful; which doctors were a waste of time. Sometimes I pig-headedly did not listen, to my own detriment. I have seen, more than anytime in my life, the value of a group in problem solving. Frankly, it’s been a testament to the information age to see a bunch of Midwestern housewives, some without college degrees, eat the lunch of the Harvard medical school grads. As a self-professed education snob, it’s been an eye-opener.
Second, getting to a high volume Cushing’s specialist quickly when I started to get really sick. I only saw three of the plethora of endocrinologists before actually getting my initial diagnosis of Cushing’s disease. That endocrinologist had a very organized, compressed testing regimen. He also had a practice almost exclusively limited to Cushing’s patients. My test results were consistently high, he discovered the growth hormone deficiency and he was able to cut to the chase so that I was able to document why I could not work, and therefore maintain my livelihood.
Third, sticking to my guns about what treatment I wanted. The endocrinologist who diagnosed me typically will have the patient have a second operation almost immediately after the first if initial testing doesn’t indicate that the surgery was successful. I did not feel comfortable with that. It appeared to me that if a first surgery did not work, the price of success for a second pituitary surgery was losing pituitary function. It appeared to me that radiation treatment is pretty thoroughly hated by patients. So, if the first surgery was not a success, I wanted time to figure out what was worse to me – living without a functioning pituitary or losing my adrenal glands. I did not want to be making that decision far from home under the stress of having just completed a major operation. Eventually, my decision was to be adrenally insufficient. It’s not necessarily the right answer for everyone, but I am the one who has to live with it, and so it was important to me to be comfortable that I had the opportunity to weigh the options for myself and make my own decision.
After my first surgery, I wanted my very obvious deficiency of growth hormone treated before making any decision as to whether that surgery was a failure. My local endocrinologist clearly did not want to prescribe growth hormone. He dragged his feet on tests. He twice tried to put me off agreeing to write the prescription. He had his fellow stonewall in getting the prescription approved. He dragged his feet on testing for a recurrence – and if I had listened to him, I probably would have been in kidney failure by the time he got around to paying attention. He was less than honest and far from helpful. I called him on it and then I went to a doctor who would treat me appropriately. The medication has been the difference between living in the dark and having light. I can walk. While I am sorry that I wasted nine months of my life fighting with him for treatment, I am glad that I had the sense to persevere.
Fourth, keeping my life going as much as possible and charting my progress on other fronts. I was determined to live as much of my life as possible even if I did not feel well. I bought a house. I got a dog. I passed the bar exam. I traveled -- I saw friends I had not seen in decades, I put my feet in the Pacific Ocean, visited the Grand Canyon, took in the changing leaves of a Vermont fall, and saw a lot of the country. I spent time with my family. I learned more about astronomy – including radio astronomy. I kept lists. Lists of things to do, of things to accomplish. Plans to make. I kept dreaming. When I got done with a list, I made a new list and I made sure some of the things from the old lists went to the new list, so that I always kept in mind what I had already accomplished.
Fifth, my insurance. Guardian rocks. Big time. They have messed up exactly two claims in all of this, and immediately fixed them when I called. When doctors refused to give me critical test results, they gamely sent me the bills for them and politely inquired as to whether these items should be reimbursed or not. My disability insurer has been great, as has been the Social Security Administration. Knock on wood.
Coming tomorrow: What I Have Learned Along the Way
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