I spent over a month with no post and things were good. My last posting was about how much better Bruce felt and blah blah. So here we are again back to no energy, extremely tired days, feeling like he's getting flu, etc. It's been going on for almost a week. I don't have a clue what could be causing the regress but it's frustrating. He goes to Kidney Institute Thursday for a day of testing to get him ready for night time cycle machine. So I hope that means he gets it soon and it helps. I know that the nurses have to train him for days and then come to our house and set it all up. So we are not looking at getting it immediately. He may need to talk to nurse on Monday about what could be wrong.
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!