We saw Dr. Burtch today. He said at this time period it is the most swollen the body will be after the surgery. He felt all around his abdomen and verified that he was indeed quite swollen. I knew that it happened a few days after surgery, there was an obvious change, but it was hard to know what was fluid from no kidneys or what. He said there is no way he would go in now and try to do surgery for PD catheter. The tissues are all connecting together and he needs more time to heal and swelling be reduced. Bruce will go back in 6 weeks and we will see what he thinks at that time. Bruce asked if his temporary port for hemodialysis would last that long and he said "we hope". This is not at all the news we want to hear. Bruce is most upset because fall ball starts soon and he will have to miss games because his dialysis time is at night. He can go in early if they call him, but there is never a guarantee. And if he does the surgery too soon, he could get in and see that it is not going to work. He is an awesome surgeon, we both understand this is best, but it's still a little disappointing. So we wait...
Bruce went back to work this week and sold 2 jobs. WOO HOO (Bruce hates that saying. He thinks everyone is facebook all day saying woo hoo this and woo hoo that) He is much happier working than moping around here all day. His appetite and energy level has improved. He has to take binders with his meals to keep phosphorus from being too high and if he forgets, then he feels sick. I have come up with some meal solutions that I can make for dinner and for him to take lunch all week. I can't say that I got much help in this area. I pretty much had to figure it out on my own. The recipes they gave us were strange or required too much work for everyday meals. I used to cook ONE thing and we all ate it, so I really don't like to be put in the short order cook situation.
He still isn't sleeping! The Ambien worked once, then it didn't work at all. Dr. Russo said to increase the dose last night to 10mg and it worked but I don't think it is going to continue. I have determined that he has restless leg syndrome. I thought that was some wacky made up disease until I've seen it in action. It was there before the surgery for a month or more but now it is out of control. The other night when Ambien worked, he was sound asleep and his legs were still moving like a dog having a dream. I read it can be caused by lack of iron which he is certainly lacking. That was caused by the loss of blood and we know his hemoglobin is low. He needs to tell Dr. Russo but he hasn't yet. A couple more nights of not sleeping and maybe he will call about it. I don't know that is the only reason for no sleep but it is a problem for him. He says that it's just a weird uncomfortable feeling that makes him have to move them.
Bruce's brother Sean now has a confirmed donor and a transplant date of Dec. 29th. They will take his kidneys out sometime in October. He will be in the same boat as Bruce is right now, living with a temporary port and going to hemodialysis 3 times a week until the transplant. We are happy this is all working out for him, but know how scary it's going to be to do all of this at once. I feel terrible for Sean but relieved that he has a donor ready to go.
I did think to myself when Dr. Burtch said it would be a few more months that maybe LifeLink would call with a kidney before then! He gets put back on the List tomorrow....WOO HOO:)
1 year ago