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.


  1. I am off work the 4-8th. If you need me to make some calls, email me the informationn and I'll get it. I know you'd like to know now, but if you are struggling to get to it, I can help then. We are off to Nashville. Talk to you soon.

  2. 7 days is what I spent in the hospital with a couple of days in ICU. I was in a hospital with a transplant floor, support was great. It was a 30 mile drive to the hospital, which meant a drive for family. On the other hand, it cut down on visitation.

    My dad was able to drive me to checkups so Susan could go back to work. After two weeks they transferred me to a transplant center close to my house which made things much more convenient, except I still needed transport. I couldn't drive for about a month.

    I remember the pain as being no where near as bad as nephrectomy, except that you have to be a lot less aggressive about resuming activity because of the extreme delicacy of the suturing of all the connections.

    Good luck, you're in my thoughts and prayers.

  3. I hope LifeLink does better where the matching is concerned than they're doing answering your questions...yikes! I am hoping that at some point while you are here you can carve out a bit of time for us to see you. I guess that will depend on whether you have the boys with you and all but I would really like to see you, and meet Roan! I am so excited for you all as the date gets closer...that much closer to a more normal life!