We met with the doctors here for our medical clearance. They need one more piece of paper (from specialty pharmacy) and then will forward the package to Osan.
My complaint for the day is that by going through the medical clearance process, I am being forced to be enrolled in the Exceptional Family Member Program (EFMP). This "wonderful" program is going to be my greatest headache.
They require that any future base be able to provide care for me. This is a good thing. I don't want to go where I have no access to care. However, their idea of "care" and mine can be vastly different.
Their idea of a PH specialist and mine can be very different as well. They will try to provide and look for a PH specialist, but I know from experience that those specialists can vary widely. The first one I saw in South Carolina told me at my first visit that I had less than 5 years left to live. I never saw him again. I will now be forced to rely on a doctor unfamiliar with PH, and unfamiliar with me, to decide what specialist I can/should see. I regularly interact with doctors who have NO idea what the realities of PH are, current treatments, current prognosis, or what PH specialists do or how they differ from regular pulmonologists.
Secondly, all future bases will require that a specialist be located within 50 miles of the base. If I had been enrolled in EFMP before, I would not have been able to go to Shaw (my doctor was 2 hrs away) and I would not have been able to come to Maxwell (I drive 2.5 hrs). Even UAB in Birmingham is 88 miles away and would be outside the 50 mile radius. Completely and utterly ridiculous.
The two doctors I've seen have been the best of the best. They've taken me from very, very sick, to living a life where I have few limitations. The medications they know to prescribe have been life changing. I've been part of a clinical trial. I've had top notch care. If I had followed EFMP rules, I would not have had these opportunities.
In fact, the doctor explained that in the future, I will have a specialist that may not be "cutting edge or a PH specialist like you have now." So let me get this straight. You are forcing me to enroll in EFMP. This program is in place to ensure I have access to care. And this access to care means my care may be of lower quality, and it will severely, SEVERELY limit the places my husband can get a job? Fantastic.
Without EFMP, I've had the best of the best. My husband has had excellent opportunities for his career. And I've done substantially better than I would have with a regular pulmonologist. I HATE when common sense is not used. I almost laughed out loud when she commented that she couldn't believe I wasn't already enrolled in EFMP. Seriously?
Every time we move in the future, I will have an enormous fight on my hands in order to get the care I know is out there. Andy's career is going to be directly affected. I'm angry. I have no choice in the matter now. Whether we go to Osan or not, I'm in this program for the duration. I couldn't be more unhappy about it.
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