It's been over a week since I posted ... it was one of the worst weeks we have had at home just trying to get through the days without losing our minds. Bruce not driving is killing me. I am running non-stop all day long or working until after 11pm. I got sick on friday and felt like I had the flu for past few days. We have to find solutions to help me out or I will not survive. We have several people helping with rides for Bruce starting next week. This is going to be a HUGE help to me. - thank you - But it's still going to be run run run. We have baseball 2 times, 2 meetings at school in evenings, 2 dr appointments, and I have to do bloodwork. Everything has to be planned out to the minute to get it all done. I never thought not driving would cause such problems.
The Neurologist- Dr. Carracino said Bruce would not be able to drive, that is was Florida law. Period. He made it seem that if they could prove this was a one time incident and that he did not need medicine or be under treatment for possible seizures, then maybe we could do something about the driving. He was not really clear on the subject and I was so overwhelmed with all the other conversations we were having that I did not push the driving issue. He is very intelligent and treats the patient in a holistic way, and he knows me so he talked openly about so many things. He does think it's possible that the seizure was the Ambien but if there is no documented medical proof of that from Ambien, then they can't officially blame it on that. He said he agreed with Nephrologist that there was nothing in any of his blood work that showed a reason for a seizure. He wants Bruce to have another EEG since the one in the hospital was when he was heavily sedated. This could show indications that he is going to have another seizure. We go to that test this Tuesday. For now, Bruce will take the anti-seizure medicine. If he is going to get a transplant from one of the potential donors, he will take him off the medicine beforehand and see what happens because he didn't want him to take med he didn't need that could potentially harm the new kidney. I think he will take him off the meds anyway after he sees that he is healthy enough. Bruce did not make a good impression the day we were there. He was feeling really bad and out of it. So officially he can't drive for 6 months... 5 more to go!
Dr. Russo increased dialysis time to 4.5 hours because they are still trying to give him enough clearance, so just now starting to get that where it should be from having no kidneys. The social worker popped in one day and left without speaking to Bruce. He was supposed to see the Dr. last week but he didn't come there. I don't understand if this is just the way hemodialysis works and we were spoiled from the attention he got when he was on PD or what? It just seems like he is not getting the attention he needs.
For all of my non-facebook friends... David Waddington is someone I met on Facebook who has PKD and had a transplant. His family has all of a sudden been thrown into the news about Health care issues. This was the article written about him and his sons dilemma over being tested to be a donor and finding out if they have PKD. - Article in NYtimes -
It's something to think about if you have children that could have the disease.
His son will be on Countdown/MSNBC with Keith Olbermann on Monday. David's blog is also on my blog list.
1 year ago