I have been struggling to put into words the news I got today but here goes nothing. Due to an insurance saga my home health nurses that manage my port and fluids had to re-open my case. I was informed a week ago that I need a different doctor to sign for my infusions because the doctor who put in the order originally now works at the VA hospital 2 hours away. SSM went ahead and called all of my providers including palliative care and they ALL refused to do it because they "aren't comfortable ordering that she needs to see an electrophysiologist"
I have thus far seen 6 electrophysiologists and I was told by all of them that they cannot help me and will not keep me as a patient as long as I am doing IV fluids. Pallitative care gave me a couple recommendations but the odds of them agreeing to sign off on the orders is close to 0. My original doctor that moved even said I will probably not find someone who will agree to it. It doesn't seem to matter when I tell them that fluids changed everything for me, they helped me more than any of my medications ever have.
Where does this leave me? My old doctor said I can go to the infusion center at St.Marys where she has privileges but I am not sure how that works because I currently get 500ml twice a day and I can't move into the infusion center. So daily is off the table. I don't know what is on the table besides my entire life.
I am scared. My heart is so damaged from defeat. As tough as I seem to be I have my breaking points and this is a HUGE one. I am scared of passing out 6 times a day, I am scared my heart rate won't stabilize, I am scared doctor's won't believe me, I am scared of hitting my head and bleeding out and so much more. I am kind of in shock at the moment and trying to process this but I need all the prayers I can get right now.
I am not ready for symptom roulette.
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