Hello B.M, We share the same story. I too have a daughter with PKD (Polycystic Kidney Disease)and I am 45. We also worry about each other.
The toughest battle we face is dealing with outsiders that have no idea what we deal with. We try very hard to hide the sickness and take care of it, so no one has to handle us in the workplace. If we do share a story with a co-worker, because we were out sick or hospitalized, no one really believes us.
The thing about PKD is that the sickness comes on hard and fast. People can’t see the inside of you, so they think you are full of lies or something is wrong with your head. This is the most painful thing about having PKD because you never know who you can trust to talk to about it, when you are really in need and fearful.
I have learned that even other patients with PKD, that do not have the same infections, can be just as ignorant as the healthy ones I come across.
I am due to have a transplant in the next year or two, and I think it will surprise at lot of people who think very little of me. If they could live in my shoes for one episode, I think they might be very, very ashamed of themselves! Terri B