I then did my morning treatment routine, went to a late lunch with Danny and his parents then went home and took a short nap before getting up and getting ready for some of our friends to come over for a game night. It was tons of fun and I really enjoyed having everyone over. Tonight marks the first night EVER the boys actually won fare and square without cheating, so it was definitely a night full of laughs. We played Trivial Pursuit: 90's Edition and we always play any game boys vs. girls. We have way to many couples to just play couples vs. couples...there is never enough game pieces to do it that way. Plus its always fun to battle between the sexes! It definitely gets loud thats for sure. :)
Tomorrow we are going out shopping for all the things we noticed we needed and didn't have for my dry run yesterday. I guess that is the positive thing that came out of being able to go home, we will be more prepared next time. I know I had 2 1/2 years to prepare for yesterday but until I actually went through it I had know idea really what I would need until I went through it....even though I was told by other CFers who have already been down this rode. Now I know first hand the things I will need!
I wish I could say that the moment I heard it was a no go because one of the lungs had pneumonia I had a happy thought that at least another family was going to receive a wonderful gift but I didn't. I just cried (for the first time that day though!) because I was really sad that I had been there for 12 hours and now I was going home and I kind of feel bad that my first reaction was to feel bad for myself....
Hopefully the next call won't be to far off behind this last one. I was really liking the idea of being able to have my surgery and be home in time for Thanksgiving and Christmas!!
Well all, I am going to finish my vest and hit the sheets! Good Night!! :)
3 comments:
Your lungs will come soon if you're already getting dry runs from what I've seen from the others who've gotten their lungs already. You must be toward the top of the list now... yay!
4 hours to Gainesville - yikes! We can get there in about 2.5 hours, Tampa General in 45 minutes, and Orlando in under 2 hours, so if/when my time comes, we live in a great spot to get on 3 lists if we need to.
I had the same thoughts as you when my number came up on the lung tx list! I had a dry run just before Christmas in 2002 (after 2 years on the list--old allocation scheme) and thought maybe I could make it home in time to enjoy my first winter and holidays without being exhausted, on oxygen, not sleeping, winter weather making me feel crappy, etc. I was so sad when it was a dry run. But, the good news is I got my "real" call on 01/02/03 and I received a beautiful set of pristine lungs. What a wonderful New Year's gift! You want to hold out for the best. After living with CF lungs for so long, you won't believe how great you'll feel! I was 28 when I had my transplant and I'm 36 now. I feel like a 21 year old :)
If you have any questions, I'd be happy to answer them.
Jill from NC
God is going to have that perfect set for you, it will be well worth the dry runs. Know that I am thinking of you and sending big hugs and positve thoughts from NC. Hang in there and keep us posted sweety. XOX
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