This PKD Leadership seminar has been very eye opening and very heart wrenching. I have been shocked at how flippantly death is discussed here. It makes me realize how sheltered my life has been up to this point and how completely unprepared I am for what lies ahead. With stories of a 6 year old going blind from kidney/liver transplant gone bad to a 6 year old maintaining 7 years of 100% kidney function up to his 13th birthday, I am slowly beginning to realize that there is no normal outcome for this disease. There is depression, extreme pain, multiple organ transplants, side effects of the transplants, dialysis, and even death imminent for my beautiful baby boy. As a mom I am supposed to fix this. I am supposed to make it better and I am helpless. I have learned a great deal about the disease from the people here and I have enjoyed talking to them. At the end of all this they will make me stronger and able to help Logan more. They will also provide a great support network for Dave and I when the hard times start to unravel.
Good news -- Logan's most recent set of blood results came back with 100% kidney function. His blood pressure isn't great still but has dropped. We are going to keep trying to lower it.
As always thanks for thinking about our family and keeping those positive thoughts coming our way.
Ann
