about to get 1st tx

nanni1997 · Jan 2, 2008

hi everyone
i am the oldest sister of a beautiful 10year old little girl who was diagnosed at birth ( i also have a 16 year old brother with cf diagnosed @ 4 months)
She is like my daughter and as we speak is sitting on a hospital bed waiting her test results that decide if we go to texas and try for a transplant. i have started looking into the things i can ( hospital info, surrouding area info, fundraising options, etc. ) i am just wondering how best to help lexie face what she is about to go thruogh. I know she knows there is something in the works, but we want to have the results of the test before we give her too much infomation... i don't want ot scare her, but this is scary. I want to have information for the questions she will be asking.

any advice given would be greatly appreciated.

nanni1997 · Jan 2, 2008

hi everyone
i am the oldest sister of a beautiful 10year old little girl who was diagnosed at birth ( i also have a 16 year old brother with cf diagnosed @ 4 months)
She is like my daughter and as we speak is sitting on a hospital bed waiting her test results that decide if we go to texas and try for a transplant. i have started looking into the things i can ( hospital info, surrouding area info, fundraising options, etc. ) i am just wondering how best to help lexie face what she is about to go thruogh. I know she knows there is something in the works, but we want to have the results of the test before we give her too much infomation... i don't want ot scare her, but this is scary. I want to have information for the questions she will be asking.

any advice given would be greatly appreciated.

nanni1997 · Jan 2, 2008

hi everyone
i am the oldest sister of a beautiful 10year old little girl who was diagnosed at birth ( i also have a 16 year old brother with cf diagnosed @ 4 months)
She is like my daughter and as we speak is sitting on a hospital bed waiting her test results that decide if we go to texas and try for a transplant. i have started looking into the things i can ( hospital info, surrouding area info, fundraising options, etc. ) i am just wondering how best to help lexie face what she is about to go thruogh. I know she knows there is something in the works, but we want to have the results of the test before we give her too much infomation... i don't want ot scare her, but this is scary. I want to have information for the questions she will be asking.

any advice given would be greatly appreciated.

nanni1997 · Jan 2, 2008

hi everyone
i am the oldest sister of a beautiful 10year old little girl who was diagnosed at birth ( i also have a 16 year old brother with cf diagnosed @ 4 months)
She is like my daughter and as we speak is sitting on a hospital bed waiting her test results that decide if we go to texas and try for a transplant. i have started looking into the things i can ( hospital info, surrouding area info, fundraising options, etc. ) i am just wondering how best to help lexie face what she is about to go thruogh. I know she knows there is something in the works, but we want to have the results of the test before we give her too much infomation... i don't want ot scare her, but this is scary. I want to have information for the questions she will be asking.

any advice given would be greatly appreciated.

nanni1997 · Jan 2, 2008

hi everyone
i am the oldest sister of a beautiful 10year old little girl who was diagnosed at birth ( i also have a 16 year old brother with cf diagnosed @ 4 months)
She is like my daughter and as we speak is sitting on a hospital bed waiting her test results that decide if we go to texas and try for a transplant. i have started looking into the things i can ( hospital info, surrouding area info, fundraising options, etc. ) i am just wondering how best to help lexie face what she is about to go thruogh. I know she knows there is something in the works, but we want to have the results of the test before we give her too much infomation... i don't want ot scare her, but this is scary. I want to have information for the questions she will be asking.

any advice given would be greatly appreciated.

IG · Jan 3, 2008

Interesting, what hospitals in Texas are you considering. I've been to a few in Texas so depending where it's at I might be able to give you more information on that part. As for fundraising I can't help you there, sorry. As for questions.. just the thought of going through this is terrifying.. but there's a lot of ground to cover in regards to questions. If she does qualify for transplant then you'll go in for a workup and evaluation where they'll cover a lot of the questions that you can think of and some you can't. Wish I could be of more help but I didn't really have any specific transplant questions myself until I got into the workup and evaluation stage where I was with the doctors.. so I'm not sure what would come up in regards to questions in your situation.

IG · Jan 3, 2008

Interesting, what hospitals in Texas are you considering. I've been to a few in Texas so depending where it's at I might be able to give you more information on that part. As for fundraising I can't help you there, sorry. As for questions.. just the thought of going through this is terrifying.. but there's a lot of ground to cover in regards to questions. If she does qualify for transplant then you'll go in for a workup and evaluation where they'll cover a lot of the questions that you can think of and some you can't. Wish I could be of more help but I didn't really have any specific transplant questions myself until I got into the workup and evaluation stage where I was with the doctors.. so I'm not sure what would come up in regards to questions in your situation.

IG · Jan 3, 2008

Interesting, what hospitals in Texas are you considering. I've been to a few in Texas so depending where it's at I might be able to give you more information on that part. As for fundraising I can't help you there, sorry. As for questions.. just the thought of going through this is terrifying.. but there's a lot of ground to cover in regards to questions. If she does qualify for transplant then you'll go in for a workup and evaluation where they'll cover a lot of the questions that you can think of and some you can't. Wish I could be of more help but I didn't really have any specific transplant questions myself until I got into the workup and evaluation stage where I was with the doctors.. so I'm not sure what would come up in regards to questions in your situation.

IG · Jan 3, 2008

Interesting, what hospitals in Texas are you considering. I've been to a few in Texas so depending where it's at I might be able to give you more information on that part. As for fundraising I can't help you there, sorry. As for questions.. just the thought of going through this is terrifying.. but there's a lot of ground to cover in regards to questions. If she does qualify for transplant then you'll go in for a workup and evaluation where they'll cover a lot of the questions that you can think of and some you can't. Wish I could be of more help but I didn't really have any specific transplant questions myself until I got into the workup and evaluation stage where I was with the doctors.. so I'm not sure what would come up in regards to questions in your situation.

IG · Jan 3, 2008

Interesting, what hospitals in Texas are you considering. I've been to a few in Texas so depending where it's at I might be able to give you more information on that part. As for fundraising I can't help you there, sorry. As for questions.. just the thought of going through this is terrifying.. but there's a lot of ground to cover in regards to questions. If she does qualify for transplant then you'll go in for a workup and evaluation where they'll cover a lot of the questions that you can think of and some you can't. Wish I could be of more help but I didn't really have any specific transplant questions myself until I got into the workup and evaluation stage where I was with the doctors.. so I'm not sure what would come up in regards to questions in your situation.

Skye · Jan 8, 2008