Wednesday, August 21, 2013

To Transplant or Not

Well, it's official. My doctors have reviewed my case and they are confident it is time to refer me to Stanford for a transplant evaluation. Once all the ducks are in a row and paper work is faxed away, it could be a few weeks before I hear from Stanford. Then it will be 6-8 weeks before my 4 day testing of evaluations begin.

I'm going to need lots of help during those four days. I'd like to have as much company as possible. Paul of course will be with me, but it'd be good to have an in-law, sibling or parent with me as well. We'll be living in a hotel across from the hospital for 4 days and it will be exhausting for me and everyone involved I imagine.

Oh, and I'll need a babysitter for four days as well. I'm hoping it can be during November when the twins are out of school. That would work best. Heck, if we all wanted to go down there and get a few rooms we could do that too.

I would just need someone to entertain the twins in Palo Alto while I do my testing. Most of it is eduction but there are a lot of blood draws, CT scans and a right heart cath, usually on the last day, which is the most grueling of exams.

I'm really looking forward to the testing phase to find out if I get listed right away or if I'm too healthy. They take into account quality of life, what you used to be able to do and what you do now. I feel like an ideal candidate because I'm strong at the moment and I'm extremely compliant. I'm also in a good place mentally, when haven't I been?

Well that's about all the transplant news I have for now. I'm just sitting and waiting.

In other news flu shots are out! I'm going to Rite Aid to get mine today. Walgreens has the mist in, so I'll be getting that for Tom and Abby after my meeting with their teacher. I'm anxious to meet with Mr. S. to find out what accommodations he can give to Abby for her learning disability. Hopefully she'll be tested at Sacramento State soon. Once they start up school there they have this class/program that tests any child on the waiting list for just $200. I can't wait to have that paper in my hand to finally prove she is dyslexic. I know in my heart that she just needs different ways to learn. I hope the school can provide that.

In other other news this morning Tom kicked butt in his tournament this weekend. He shut out 3 halves in goal during the first two games on Saturday. No goals scored against. Then On Sunday he did pretty well. He wasn't pleased because we lost the first game. But he got all jazzed for the second game. He said, "Mom, I have lots of energy, I want to play the field." So Coach put him in as forward and in 104 degree temperatures he sprinted his heart out, stealing the ball, dribbling through defense and assisting one goal and scoring another. We creamed the team about 7-1. It was the same team we played in the morning. Having Tom out there made a huge difference and having the boys out for revenge also played a huge role. In the end we got third place in the tournament out of 6 in our bracket. Not bad! Tom was SO PLEASED! And I was a very very proud mama.

1 comment:

Piper said...

Good luck! Post-tx they most likely won't allow you to get your kids the live vaccine. At least I personally am not allowed to have any contact with a child who has had any live vaccine for 4-6 weeks, which is -- granted -- a bit extreme, but my center is known for being cautious and I like it like that. Post-tx it's safer not to be anywhere near a live virus as a general rule.

Beyond that, I actually don't recall my eval being all that difficult, although it was certainly intense. I remember wrapping up the last day wondering why I had been so nervous about the whole thing, quite honestly. The heart cath was annoying -- I suggest requesting mild sedation like ativan or even some benedryl if you have any sort of aversion to abnormal heart rhythms. But aside from that one test and something known as a lung perfusion scan (which utilized a machine that freaked me out by getting very close to my body) it truly wasn't that bad. They should have plenty of O2 available at every turn and therapists/techs who are well versed and schooled in the world of tx to make things easier. All the staff and my docs were incredibly reassuring, acknowledging all my fears, listening carefully, and then addressing them one at a time. I suggest writing down questions as they come to you beforehand and during the testing (when possible) so you don't feel put on the spot when you meet with the SW, or pulmonologist, or surgeon, or whomever is the right person to answer that particular question. I did, and I totally ended up needing those notes!

Good luck! You'll do fine and learn that tx, like so many other things, is just another step in the CF journey if you choose to take it. The waiting and recovery were hard, for sure, but FAR outweighed by the awesomeness of being part of something that downright miraculous. Sending love and light!