As some of you know, DC is home from college very sick. The doctors think they know the issue (it's autoimmune) and there is a plan in place. For now, we manage symptoms (which are severe and sometimes need urgent care).
The ER and DC's specialist have all told me that primary care should be managing the care and coordinating issues; we have been told that we are supposed to call the PCP for things that don't fit any of the specialists. HOWEVER, primary care tells me that it's MY JOB to coordinate care. PCP told me that I need to let ALL the doctors know about medication side effects, new symptoms, new issues, ect. We went in last week with an urgent symptom that the current specialists weren't comfortable handling (They all told me to see DC's PCP). PCP wouldn't touch the issue and referred to another specialist. As a new patient, the new specialist didn't have openings for two weeks (understandably). The urgent symptom got worse as the day went on and PCP sent us to the ER AGAIN (they have done this three times in the last month, usually within 12 hours of us being in their office).
I am so overwhelmed with 10 specialists and 15 medications (all but 4 are new, some OTC, but all "prescribed"). Now I am being told by the PCP that for every new issue I need to contact all the specialists and coordinate care; PCP is not part of that team.
This is not a Full-Time job. All I do is coordinate specialists and manage DC's symptoms. I have had to leave one of my jobs and cut my hours to the bare minimum for the other (the boss is not happy).
It has been months and things are worse, not better. The specialists are (almost) all amazing (we are replacing one), but the PCP is worthless. He hasn't actually diagnosed anything (correctly) in 8 years...
I am DONE and there is no end in sight.