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.


Hanging in there

I am so busy and don't see it ending soon. THANK YOU to the people giving Bruce rides to work and to dialysis or home from dialysis late at night. I don't know how I would make it without that help. Bruce is doing OK. It's up and down as usual. He always has something wrong...headache, back ache, leg aches, etc. No energy is the norm. I think he has a headache suddenly appear everyday. It has to be caused by something but doesn't seem to be the blood pressure. I tell him to tell Dr. and nurses but he tends to underplay everything and if I've learned anything from this terrible experience is that you have to take charge and over-emphasize everything or nothing will be done. I can't help but just be so fed up with all of it and feel like he is never going to have even a half-way normal existence until he gets a new kidney. I know he feels it even more and not being able to drive has made him even more depressed about his condition. Especially when everyone thinks he will not have another seizure but it's the law not to let him drive.

He was told he could take ibuprofen! so strange because since I've known Bruce he has never been able to take it because it harms the kidneys. He tried it for back pain and worked a little.

He sent in paper to be put back on UNOS list. We have not heard anything from Lifelink but the possible donor friend is having more tests next week and that should be the end of it and we will know answer right after that. Lifelink told him that the surgery could potentially be done end of Nov. but our Nephrologist said he would be lucky to get done by January. We are leaving all that up to donor. We are both willing to work with whatever he wants to do of course. It really isn't a reality that we even speak about or plan for because it means so much and would be such a miracle that it's hard to imagine.

I will post if I find out more about David Waddington's son on MSNBC. He is waiting to be personally interviewed by Keith O. but his own father is in kidney failure right now so he can't do the interview yet.


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.


Amy's Taxi Service Must End

This week has been a killer. I am being run to death and pulled in every direction. Bruce not being able to drive and needing to go to Dr. appointments, dialysis for 4.5 hours, picking up things from work on top of taking kids to schools and picking them up at different times, baseball practice, etc. etc. etc. is too much for me to do and try to work also. It's been a scheduling nightmare. Whatever it takes, I will not leave the doctor appointment on Monday unless he gives him permission to drive to work!

Bruce seems to be stronger and have a little more energy today so I hope that can last over the weekend. Yesterday he got a pain in his back - flank pain like where a kidney would be but since he has none, I thought it could be something to do with the nephrectomy surgery. Tonight the dialysis nurse said she thought it was scar tissue healing. He had to take pain medicine yesterday which he hasn't needed in a long time so I knew it was bad. Still hurts today but not as bad. He still has the all over aches that he has had since he got home from hospital. Dr. Russo mentioned that it could be because of the uremia. It seems that he is just not getting enough dialysis but I am wondering if this was happening before the seizure or is this just a set back from the seizure and hospital stay. The definition of uremic poisoning (link above) is exactly how he has been acting. I hope since today was an improvement that means the dialysis is doing a better job. They have started giving him some nutritional shakes this week also. The blood pressure is staying good and he is sleeping much better than before seizure. ~knock on wood~

We got the latest hospital bill. I don't want to dwell on the financial aspect of all of this or I will get crazy, but I found it very interesting to compare each of his hospital stays and their costs. This "seizure incident" was double the cost of the Nephrectomy surgery. One main reason was the amount of drugs given this time $34,812.00! When he had surgery it was $6878.00 including anesthesia. I thought the respiratory part would be high, but it wasn't at all. So there's something to think about in the big picture of what health care costs. The drugs costs more than the room charges or anything else.