We made it through Christmas. Even though Bruce's health is up and down, he managed to see lots of family and eat halfway normal. I think the break did us good but today was back to medical mania! They sent him home from dialysis to do it all at home now. No warning. So we didn't have things set up or supplies we needed.
He managed one exchange alone and is getting ready to do another one right now. There's so much to do it seems like getting ready for surgery at this point. (he made me take this pic of him) He needs a chair (reclining), so I need someone to help carry ours from living room to bedroom. For now it's going to have to take place in living room. He really needs to be alone without 2 boys and a great dane running around.
Baxter is delivering a truckload of supplies on Monday. I guess that's nice of them but not looking forward to boxes taking over the house. I hate clutter.
Good news...he lost TEN pounds in less than a week! Just from the little dialysis they did 2 days last week in training. He doesn't feel it but there's tons more water to come off I'm sure. He's swollen all over. His diet can go back to eating proteins now but he still can't have much potassium or phosphates. >New Diet Info Link here<
AND other good news is that he is changing and cleaning the bandages himself although he acts like he's going to pass out while doing it.
So he will be doing this at home 4 times a day for weeks until they decide to train him on the machine that will let him do the dialysis while he sleeps.
My husband has polycystic kidney disease (PKD), diagnosed at age 17. He just turned 40. Five other close relatives also have PKD. We have two boys-ages 8 and 3.
Currently he is on transplant list and starting dialysis.
I hope in writing this I can help someone going through this same scary process. I could not find much information about it and there is SO much to learn and deal with!