Friday, October 17, 2008


Never in the history of us going to Gainesville for a doctors appointment have we EVER been seen on time (I am talking we don't get seen for hours after our appt time) but Wednesday....we found out miracles really do happen! :)

My appointment was for 10:30 we got there at about 10:05 . This is how the rest of the appointment went...we were seated, checked out by the nurse, put in a room, talked to by the nurse in charge of there research program and then we saw the doctor. After all that we were in our car and driving home by 11:30!! Now that's what I call AMAZING!!

There are 3 doctors who are at Shands and Wednesday was the first time we met the third one, luckily we liked him a lot. He actually explained things to me so I could understand things instead of the other doctor who just makes me feel like I am a number. I like 2 out of 3 of the doctors so I guess that is good!

He listened to my lungs and he said they sounded clear, so that is good and although they can't tell you exactly where you are on the list he did say there were several people on the list way sicker than me and that have a higher score than I do.

So in order for me to get lungs they would have to see if they are a match for every single one of those people first before they see if its match for me. I have only been on the list for 5 months and the "average" wait they say is a year.

Its good news that I am remaining stable but at the same time I don't want to have to wait so long that I get sick and suddenly have a turn for the worst. The good news is that every time I go to a transplant appointment the doctors meet afterwards to discuss how you are doing and to re-evaluate your score (I didn't know this) so in 3 months when I go for my next appointment if I haven't already had my surgery they will check me out and see where I will be then.

All in all it was a good day and except the fact that I had to get up at 4:30 in the morning to get ready for my appointment and to be out of the house by 6:00 (I was extremely tired by bedtime that night) I was glad we went and I am glad that I am doing ok.


feafer said...

Yay, sounds like a good trip. Are you aware of a lecture on Tuesday from a CF pt. who wrote a book and has had the transplant?