Status = same

Bruce's potential donor completed his last test this week, an ultrasound. He has to meet w the surgeon and nephrologist I think next week. Then the case goes before a committee and they decide to do transplant surgery or not. I feel like they have been less than cordial to the donor by not scheduling this things together so he doesn't have to drive from Orlando multiple times and wait. I plan on saying something to Lifelink about this because we have to call them anyway. I think they should be bending over backwards for him and that is not the case.

Bruce met with his surgeon and he said that the temporary port he has needs to come out or it will get infected. If Bruce is going to have a transplant fairly soon, then he can probably wait. But if this is not going to happen soon, Bruce needs to have surgery to get the PD catheter again. Not ideal, but better than an infection. I worry about anything like that now because we have ended up in the ICU 2 times this year over complications from all of this already. So surgeon wants Bruce to tell Lifelink about the port because he said that it makes them "nervous". Not sure exactly what that means. I wasn't in the room to hear that comment. So I'm hoping that means Lifelink won't find someway to take their sweet time scheduling the surgery if things work out with the donor.

So we have no idea what the future holds as usual. We can only take it a day at a time and not make any plans. That is MUCH harder when you have kids who are always trying to plan their next fun event.

Bruce feels about the same. Terrible right after dialysis, then he gets energy late at night on those 3 days. He is able to work and feel good now during day except for the headaches which no one has addressed yet. The dialysis nurse says blood pressure under control, but if Bruce isn't taking it on his own then we really don't know. The biggest problem in our lives is the driving. It seems impossible to keep it up the way we are going.

1 comment:

  1. I think uncertainty is what happens with this type of thing. I am continually shocked at how half-assed things are "planned" or done on the hospital end. It's almost as if it's their first time at this.