Thursday, August 13, 2009

Happy Birthday Will


I don't think he'll mind me saying that he's 41 today. Quite a thing. The Cystic Fibrosis Foundation puts about the best spin on all this stuff that I think can be managed, and even they eventually have to come out and say that the median predicted life expectancy of someone with CF in the US is about 37 years. Up from 32 in 2000. Up from much younger than that when Will was diagnosed and growing up. Will's transplant, of course, is the magic that buys all this extra time. As on every birthday of Will's that I've ever been a part of (since I met him after his transplant), we take out our grateful hearts today and are especially mindful of a family that somewhere, about 8 years ago, suffered a huge loss and at the very same moment made the gift that makes all these birthdays possible. Thank you donor family, thank you.

We had birthday celebration #1 last night with his parents and my parents; birthday celebration #2 today with just our little family. Very nice, but quite tiring when one is on IV antibiotics, strong anti-virals, and weird anti-fungals in addition to the normal antibiotic and immune suppression regime. And operating at less than 50% lung function. Will made it through though and had a good time, I think. Yesterday GG made a fantastic cherry pie (Will's favorite) from scratch. Today we had some of the last summer berries, ice cream and these fancy cookies Will likes. And a rainstorm during dessert, the longest and heaviest since at least May.

Will is starting to feel better. His blood work from Tuesday shows the CMV levels are back down under 1,000 units (I can't remember for the life of me what the unit is) and the rest of his blood work looks pretty normal for him except for the tacrolimus level which is scary high even though his is on an almost nothing does (which is scary on its own b/c the tacrolimus is one of the main immune suppressing medications he takes to maintain his transplant). This dodging around of the tacrolimus level is because of the voriconazole, which is metabolized by the same liver channel or something and always screws up everything tacrolimus-related. So, tacrolimus dosing will be looked at closely and the clinic will call back tomorrow with additional advice, if there is any.

Unfortunately the camera battery just died and I have never got around to getting a back up so more photos will have to wait.

1 comment:

IVF 40+ said...

Happy Birthday to Will. Congratulations to you both. I hope this year brings health, wealth and happiness.
You are an amazing support to me all the time dealing with your own load.
Thank you.