The latest grief

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. Amy, know you are overwhelmed, it comes through on your posts, but, it still seems that you are going to have to rely on your own research on many issues and not on the medical/social services that should be helping you. First of all, Fla state law does not permit pts with a seizure to drive. In many cases they may regain their license after being seizure free for 6 mos (in some cases, 2 yrs), are under regular medical supervision, submit a current neurological evaluation. Then all is reviewed by the state Medical Advisory Board and they determine if license can be re-instated or if longer period is needed.
    Your immediate problem is assistance with transportation. There exists the Florida Special Transportation Services division (brought about via compliance with the fed ADA law). I believe you can contact them by dialing "711". I checked and LeeTran Home operates something called "Passport" which is a paratransit service for disabled citizens. There are some requirements that must be met and some distance limitations. It would be worthwhile to check out. If necessary to meet the distance from a main transit line (assuming your home may not), consider any friend or acquaintance, etc that may be within 3/4 mile of one of the main stops where Bruce could be dropped off to be picked up by the service.I think your trips must be scheduled in advance with this service but that should not be a problem.
    If all else fails, use the newspaper! Get a human interest article written about your problem and see if the community doesn't rally with some volunteers.Good luck.

  2. Amy,
    I'm not sure what the school mtgs. are about, but if you tell them of your situation, the teachers involved may be willing to meet with you at your convenience, before or after school, to share whatever they were going to have in the evening. If is a conference, they could do it on the phone this time. Good luck.
    Love, Sally

  3. You poor thing. I'm sorry you are being run off your feet. I can easily imagine that you are run down and prone to catch the first bug that comes along. I wish there was some way we could help you. I hope you can find enough help to get through the coming months.

  4. I'm so sorry you're going through this with him not able to drive. I will say extra prayers for you tonight. I know it's difficult right now as I can feel your pain in your writing. I hope that someone comes through for you and is able to help you out. Hugs to you!

  5. thanks for posting that info on david waddington.. i just read the article online and i reposted it on my facebook page!

  6. Sean enjoys talking to Bruce. He "hears" more from him than most others. Thanks for calling the other night! We'll let you know how it turns out!