Bruce will get his transplant from Ken on January 14th. They have to go 2 days before that for pre-op. That is all we know for sure now. I can't plan anything until we get a packet of info from Lifelink, then I have about 100 things to coordinate. It's exciting and surreal. We have told Beck but even he seems to blow it off like "yeah right, whatever!"
Bruce saw the Neurologist this week. He continues to have headaches since he cut the anti-seizure meds in half the headaches were about cut in half also. The worst ones seem to happen at work and during or after dialysis. The Dr. said everyone is allowed to have 1 seizure in a lifetime for various reasons (one of which is lack of sleep) and it be thought of as nothing but Bruce's situation was cloudy. He weighed the pros and cons with us of going off meds and getting another seizure or going on a different anti-seizure medicine and risking having bad side effects from that. The big question: Which one would be something that could delay a transplant? He ended up letting Bruce go off medicine completely especially since he isn't driving. He also said something interesting - that Gulf Coast Hospital tends to intibate quickly. Which was the main reason this seizure kept him in hospital for so long. They put the tube in and then took forever to ween him off of it meanwhile drugging him to death to keep him calm. I really believe he won't have a seizure if he stays the same as he is now. I also think the anti-seizure med has so many side effects mentally and physically that he is much better not taking it.
He gave him rx for headaches - Fiorcet, which is the headache med I have taken for 10 years. I needed more so he called both into Target. When I picked them up tonight, there was a note on it that said "same med as wife? is this correct?" I thought it was funny because we know the staff there and they know everything we are on.
For those who don't know yet, Bruce's brother Sean did really well with the surgery. No complications, just a lot of pain afterward. He had same incision as Bruce. Both kidneys were taken out (about 11lbs each). He is recovering at home now and going to dialysis. He is hoping for the transplant at the end of December. Mary's blog is linked on mine "Living with PKD" if you want to read more about Sean.
1 year ago