Merry Christmas

YES! It was pretty good! I think Bruce managed to make it through the past few days fairly well considering he's still feeling bad. Same symptoms, occasional vomiting, massive headaches, and VERY high blood pressure. He spoke with Dr. last monday before Christmas and told him his BP readings- 170's over 100's on average. Dr. said to just take Fiorcet for headache pain everyday as prescribed, not just when he gets the headache, and see if it helps. I can't believe he didn't change the BP medicine. I know it was just changed the week before, but he said it would be instant if it worked and call him if he wasn't better. I am not sure if maybe he has decided best not to try new one and get side effects, and he's just waiting it out for the transplant. This is very unsettling. I feel like we are just buying time and hoping to get to Jan. 14th.

Luckily he has made it through most of Christmas without being miserable. He had dialysis early on Sat and was able to come to my parents to have dinner with my family afterward. Usually he is so ill for at least an hour or two and can hardly speak. The kids are doing great except Beck got a sore throat and fever yesterday. He woke up this morning in pain from it again. He has acted normal and hasn't developed other symptoms. I am dosing him with vitamins any way I can and trying my best to disinfect so Bruce does not get it. Anything that could postpone a transplant is on high alert these days.

I sent a list of about 10 questions to our "transplant coordinator" at Lifelink in Tampa. She answered 2 of them and sent me extension #s of other people at Lifelink to call to ask them. I was very irritated. I don't know what her job is if she couldn't answer these questions for us OR go get the answers by emailing the people OR simply walking down the hall to their office. And most disturbing is that these questions were common things that every transplant patient would need to know. Like, What hotels offer discounts for patients?

I have NO TIME to call 10 people on top of everything else it's going to take to plan this out.
Here are the only things I know now:
1. Bruce will be in hospital for 7 days if all goes well.
2. The appointment schedule after discharge if all goes normal is: 3 times a week for 1st month, 2 times a week for 2nd month, and 1 time a week for 3rd month.

We were told for weeks that a "packet" was coming with all information about the transplant. This packet never arrived, Bruce had to call and ask about it 2 times and they would say they were mailing it. The day after I emailed the questions, we get a letter in the mail (one page) telling him what times he has pre-op appointments 2 days before the surgery. That is it- nothing else. And it was dated the same date as when I sent email so they did it because of my email. Said "packet" is either that one page or something they just haven't bothered to mail out yet.

I think I am going to have to make the time to get some things answered tomorrow no matter what. I did what I could on the weekend...I called Tampa General Hospital and left message. A woman called me back in less than 30 min and faxed to us immediately the list of hotels and prices of discounts. She told me that he will go to ICU for a day or 2 and no one is allowed to spend night there. Then he will go to special transplant area and the room has place for me to sleep. I was so impressed that I actually got a call back and real information. Maybe we are going to go to an actual hospital that functions like it should! Boy will that be a change!

Sean is getting his transplant this week! 2 more days to go. What a miracle.


The final countdown

Less than one month now til Bruce gets a kidney. Time is flying by. I know I have not posted in awhile, wish I could say all is well but it's the typical roller coaster ride with Bruce's health. I have been busier with work but still having to plan every day to the minute, juggling things just to get everyone transported and taken care of. I feel like I'm barely getting things done and I'm in constant panic of what else needs to be done. Of course the demands of the holiday season are not helping matters. I still have presents to buy and a million things to do. That would be normal this time of year except I would have Bruce to help and he could actually DRIVE! That aspect is killing us.

Last week, Bruce was very sick. He was throwing up a lot and the headaches continue. He saw Nephrologist on Thursday Dec. 10 because headaches were so bad and we were concerned about blood pressures being so high. Dr. Russo gave him a new blood pressure med. He started it that Friday. By monday he was throwing up and got swollen all over. He did his dialysis that night, but Tuesday and Wednesday were more of the same. Sick all day. Headaches too. I had to go get him from work early and take him to dialysis early 2 days. Dr. Russo saw him at dialysis center on Wed. and called me to tell me he thought he was having bad reaction to new medicine or as a combination with the other 20 drugs he's on. So he called in new one and told me to get it as soon as possible. It's a blood pressure medicine that is a patch. Dr. Russo thought the headaches were most certainly because of blood pressure being too high.

Thursday he was completely fine. Friday he had a little bit of a headache but after I brought him home from dialysis it was worse. Sad for him because Friday was his birthday and it was spent working and at dialysis. Oh yeah, they increased his dialysis time to FIVE HOURS! That happened about a week ago. It is because were not getting good enough clearance. Today we celebrated his birthday...we went out to eat, then he got one of the massive headaches and he had to lay down for awhile before cake or presents. So it seems new medicine is not working OR headaches caused by something else. He has eaten much less sodium and phosphorus this week but it hasn't made a difference yet. Have to wait to see how he does tomorrow and Monday morning, then call Dr. Russo. This is just another typical week of issues ever since he had kidneys taken out and went on Hemodialysis. He is so so so lucky to be getting a kidney soon. We just have to make it until then - make sure he stays out of the hospital and is able to function at work. Only a few more weeks...

Lifelink in Tampa (where he is having his transplant) has been completely undependable and deficient on what they need to do. I'll post about that soon. I am in disbelief.


We have a REAL date

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.