This is the first and only post Bruce has actually asked me to make (and he told me the title). On Friday his PD nurse Diane (aka Mrs. Claus) retired. When Bruce found out, he was very sad because he liked her so much. We both know that when he goes back on the PD he will be just as well taken care of by Anna the other nurse at the Kidney Institute. They have all been wonderful there and having someone you can call 24/7 when you have a problem is just priceless in this situation. He has been through so much this past year, starting last fall when he was so sick all the time, and the surgery last December and training for the dialysis at home, all the ups and downs with his health in the middle, the big scare when he lost so much blood, and so on....and Mrs. Claus was there helping him through all of that. He said she has a way of making him do the things he needs to do that he is so scared of. He went to visit her on her last day and this is a photo of them. Thanks Diane for everything you did for us!
I haven't posted in awhile because I have been overwhelmed with work, school starting back for Beck and Pre-K for Roan. I think I needed a rest after living in crisis mode for weeks. For Bruce, everyday does get a little better. He goes back to work on Monday and I think that is going to be hard for him because he does not feel well all the time and he has little energy. The day after dialysis is better than the day of. His hemoglobin was only around 9 last week so that could be part of the reason he feels bad. He is still swollen and loses about a pound each dialysis visit.
The number one problem is lack of sleep. He has not slept at night since he went in for surgery. It has been a month now. He is up until 1 or 2am. He gets up early and only has a little nap if any. He has HUGE bags under his eyes which has never happened in all the years I've known him because he always sleeps well. I don't know if he's ever been up until 1am with me except maybe a New Years Eve party. I look at him around 11pm every night and see how exhausted he looks but nothing we have tried has worked. He finally got Ambien after insurance approved it and he took it last night and hallelujah it worked!
Dr. appointment on Tuesday with Surgeon to discuss next surgery for getting catheter back to go on PD, get back on the list for a donor, and see about getting the hemodialysis port out. That could end up being yet another surgery. At least none of them should be as bad as the last.
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!