I have to admit i've had numerous Providers leave their positions, to take other jobs either in different positions altogether or in different states. 1 in a Biotech setting and some of them where hard, b/c they where great Providers... Eventually I replaced them and my care came together to be the Team it is now, which is nothing short of an amazing Team in my opinion. I've often gotten comments from other MPS/Rare disease families in recent yrs they wished they had a Team like I seemed to have. It took a lot of yrs and ups and downs but the Team I have now kind of always even made me think I was pretty lucky. Sure it's not perfect, non is but pretty darn close!
I have a really great Team of Specialists but how do I replace her, how do I replace the care she's given and championed and never given up on whether simple or more difficult?
I can remember before the 1st time I saw her how nervous I was, wondering if I was wasting my time given the past experience(s) I'd had there and w other and yet how well the appt went. I was still nervous she'd change her mind but relieved to at the possibility I might start to feel better. It took me a long time to stop questioning was she going to keep trying which admittedly i've felt bad about that but to really trust she wasn't going to give up. I cant say when but it's like it just clicked, she'd done all these surgeries and she hadn't stopped believing me, she wasn't going to stop or abandon me. She was human and it wasn't just a job to her? =)