Sounds reasonable. I think the most important thing is to look at it realistically and review (as much as you can) the possible eventualities and make a plan in consultation with your family and care providers.
POTS is a lot better understood now than it used to be. It took me 10 years to get diagnosed and the neurologist who finally diagnosed me said there wasn't really anything they could do. But the doctors I've had over the past 8 years have been much more confident in being able to offer some improvement in symptoms and have had quite a large reserve of possible treatments to work with. I'm not entirely sure if this is just an Australia versus the Netherlands thing (I guess I'll find out when I move back to Oz in a couple of months). If you want to talk more about it feel free to PM me.
Good luck working towards better health!!!