This week I returned to being treated by a GP I had had about 6-9 years ago. He is very experienced, keeps up-to-date, and takes on the more difficult cases in town. I needed someone who would not be intimidated by all the intricacies of a Cushing's Disease diagnosis and the ins/outs of surgery and recovery (since that is very much a long-term process), and I especially needed someone who would learn about my illness and needs during recovery, so that in an emergency he could make quick decisions. If I show up in the ER in adrenal crisis, I can't have a doctor that will wait around for a response from Dr. F (my endocrinologist 3 states away) before acting...I want to live! So, I set up an appointment, and it took about a month to be able to get in to see the doctor himself (others in his office could have seen me sooner), but it was well worth the wait!
I was worried that he would question my diagnosis, question my endocrinologist's credentials, not understand the breadth and depth of it's effects, not anticipate the long recovery time and need for continued monitoring and treatment post-op, etc...BUT I WAS WRONG! I guess you get used to the nay-saying, judgmental doctors who automatically assume you're just fat and lazy, read too much on the internet, saw a quack, or are simply mad that you'd seek a second opinion, so when you see a "good" doctor that is both knowledgeable AND supportive, it is like a window opening from heaven, replete with golden beams lighting their face and the heavenly choral "Aaaaaaah!"
He did initially ask about my endocrinologist, but was more than happy seeing the positions included in his signature to ask no more (he has a CV of GOLD!). He stated that he LOVED the thorough, well-organized dictations from my endocrinologist. He did ask about my symptoms and wanted lots of detail (symptoms at time of onset, symptoms now, what signifies a high and a low, etc), but it really wasn't coming from a place of doubt, and honestly didn't even feel like he needed to know that to be able to treat me in the future...it *felt* like he just wanted to know more, to have more information about a rare disease and what it looks like in real life. He even went so far as to say, with compassion, that I must have been through a lot, with doctor's wondering what was wrong with me, people treating me like there wasn't anything wrong, etc. !!! If I weren't trying so hard to keep my brain and words in check (the fog, memory, and word recall/saying the wrong words are SO hard at times), I probably would have cried right then and there. Yes! I told him that years ago, he actually tested me FAR more than anyone else, looking for CAUSES for my unexplained bruising, CAUSES for my unexplained tachycardia...when other doctors rarely saw more than one symptom and generally tried to treat just that, if anything. He was the doctor that gave me the typical "when you hear hoof beats, think horses not zebras," after having done the testing above, but I was nice and did not remind him of that. (Now, if it were the OB I dealt with 2 years ago...LOL!)
Then he asked what I wanted from him (not in a challenging way), and I explained Dr. F's unconventional practice, that I really need a good GP at home for emergencies and the day-to-day that understands the complicated nature of this disease, and we talked about adrenal crisis post-op. He knew enough to make sure I knew there was a chance I would be adrenal-insufficient permanently post-op. We talked a little about being hypo-pit (losing hormone production from pituitary damage -- either due to the tumor itself or the surgery) post-op, and even that there would be no way to know how much they might have to remove till they actually get in there, nor how my pituitary will react till after surgery and some healing. We discussed that often multiple surgeries are required with my kind of tumor(s). AND, since he is the medical director of about 2/3rds of the EMS in town, he did say they don't carry the solu-cortef that I would need in an emergency on the ambulances, but that if I had my emergency injection kit, they could call him directly and get legal permission to administer my medication (You often lose cognitive ability or go unconscious with an adrenal crisis, so we cannot assume I will be able to give it to myself...and while my family will be taught how to do so, we cannot assume I will always be with them). I actually know the medical director (and EMS lieutenant) for the ambulance crews in my section of town, and would have to bring my emergency letter to them so that they are aware of my case and what to do, as again the medical director would need to give legal permission allowing the EMT's to administer the life-saving medication. That was good to know.
And I left with him asking for the before/after onset pictures and detailed symptoms list I made up for the surgeon. He also wants to see my most recent MRI. In the end it cost a boatload of mula, but it was SO worth it. I feel like he is one that will enjoy the challenge and love the rarity of my case, and will thus SEEK the knowledge needed to treat me. I feel like I will be in good hands in my home town of "Nowhere, AK."
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