We're back from evaluation

M

madisonsmom

New member
Kylie,

Perth as Austraila or Scottland ? That's far in either case. My daughter want's to go to the "land down under", but I don't think she could handle the trip at this point. Maybe someday.

Since I'm new , I may be asking redundent questions, sorry if I am.
are you on a transplant list?
kathy
 
M

madisonsmom

New member
Kylie,

Perth as Austraila or Scottland ? That's far in either case. My daughter want's to go to the "land down under", but I don't think she could handle the trip at this point. Maybe someday.

Since I'm new , I may be asking redundent questions, sorry if I am.
are you on a transplant list?
kathy
 
K

kybert

New member
australia <img src="i/expressions/face-icon-small-smile.gif" border="0">

im not on the list. not at that stage luckily.
 
K

kybert

New member
australia <img src="i/expressions/face-icon-small-smile.gif" border="0">

im not on the list. not at that stage luckily.
 
K

kybert

New member
australia <img src="i/expressions/face-icon-small-smile.gif" border="0">

im not on the list. not at that stage luckily.
 
M

madisonsmom

New member
kiely,
so, it's summer there now? <img src="i/expressions/face-icon-small-shocked.gif" border="0"> Just like an american,I assume every one on the web site is from here. I think you are the first person I've talked to from austrailia. or at least the 1st one I knew of. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Are you still feeling better on the cipro? Maddy is seeing her MD tom. and I have a list for her to take. I want her to ask about that new Drug xolair for the ABPA.
and my Dad forever the scientist, pulled up all the transplant center statistic from a medical jounal that breaks the stats down to the nitty gritty. She'still feeling better and tom. will be about 2.5 weeks on IV antibx. She's on tobra, aztreonam and zyvox ( she allergic to Vanco.)
 
M

madisonsmom

New member
kiely,
so, it's summer there now? <img src="i/expressions/face-icon-small-shocked.gif" border="0"> Just like an american,I assume every one on the web site is from here. I think you are the first person I've talked to from austrailia. or at least the 1st one I knew of. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Are you still feeling better on the cipro? Maddy is seeing her MD tom. and I have a list for her to take. I want her to ask about that new Drug xolair for the ABPA.
and my Dad forever the scientist, pulled up all the transplant center statistic from a medical jounal that breaks the stats down to the nitty gritty. She'still feeling better and tom. will be about 2.5 weeks on IV antibx. She's on tobra, aztreonam and zyvox ( she allergic to Vanco.)
 
M

madisonsmom

New member
kiely,
so, it's summer there now? <img src="i/expressions/face-icon-small-shocked.gif" border="0"> Just like an american,I assume every one on the web site is from here. I think you are the first person I've talked to from austrailia. or at least the 1st one I knew of. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Are you still feeling better on the cipro? Maddy is seeing her MD tom. and I have a list for her to take. I want her to ask about that new Drug xolair for the ABPA.
and my Dad forever the scientist, pulled up all the transplant center statistic from a medical jounal that breaks the stats down to the nitty gritty. She'still feeling better and tom. will be about 2.5 weeks on IV antibx. She's on tobra, aztreonam and zyvox ( she allergic to Vanco.)
 
M

madisonsmom

New member
Liza,
Hope you and Anna got home safely this weather has been brutall every where from Wi down to texas.<img src="i/expressions/face-icon-small-confused.gif" border="0">.Will she do some IV anti bx at home?
Let me know if you are getting the eval moved ahead. Did it take 2-3 weeks for your center to get the records realeased after you decided to pursue transplant.
Did they do a cardiac cath on Anna or just an echo?
So far Duke,NC is looking good, but I think we'll start with University of Wi at madison, she's not ready to leave the state and I don'tknow if I'm ready either.
Kathy
 
M

madisonsmom

New member
Liza,
Hope you and Anna got home safely this weather has been brutall every where from Wi down to texas.<img src="i/expressions/face-icon-small-confused.gif" border="0">.Will she do some IV anti bx at home?
Let me know if you are getting the eval moved ahead. Did it take 2-3 weeks for your center to get the records realeased after you decided to pursue transplant.
Did they do a cardiac cath on Anna or just an echo?
So far Duke,NC is looking good, but I think we'll start with University of Wi at madison, she's not ready to leave the state and I don'tknow if I'm ready either.
Kathy
 
M

madisonsmom

New member
Liza,
Hope you and Anna got home safely this weather has been brutall every where from Wi down to texas.<img src="i/expressions/face-icon-small-confused.gif" border="0">.Will she do some IV anti bx at home?
Let me know if you are getting the eval moved ahead. Did it take 2-3 weeks for your center to get the records realeased after you decided to pursue transplant.
Did they do a cardiac cath on Anna or just an echo?
So far Duke,NC is looking good, but I think we'll start with University of Wi at madison, she's not ready to leave the state and I don'tknow if I'm ready either.
Kathy
 
K

kybert

New member
it sure is summer. although, like last summer, this summer has been really mild so far. no boiling hot stinky days yet. i finished the cipro a few days ago but im still on colistin nebs and it seems to be keeping everything under controlled, which im amazed at. cipro and inhaled antibiotics usually do nothing. definately ask about the xolair. ive heard others have had success with it. the next time i have an abpa flareup i will ask my doc about it too.
 
K

kybert

New member
it sure is summer. although, like last summer, this summer has been really mild so far. no boiling hot stinky days yet. i finished the cipro a few days ago but im still on colistin nebs and it seems to be keeping everything under controlled, which im amazed at. cipro and inhaled antibiotics usually do nothing. definately ask about the xolair. ive heard others have had success with it. the next time i have an abpa flareup i will ask my doc about it too.
 
K

kybert

New member
it sure is summer. although, like last summer, this summer has been really mild so far. no boiling hot stinky days yet. i finished the cipro a few days ago but im still on colistin nebs and it seems to be keeping everything under controlled, which im amazed at. cipro and inhaled antibiotics usually do nothing. definately ask about the xolair. ive heard others have had success with it. the next time i have an abpa flareup i will ask my doc about it too.
 
L

Liza

New member
Hi ya'll. My mom and I got here to NE yesterday (wed). Anna was ready to get out of the hospital. She wanted to stay a couple of days in her apt. to visit some with her friends before heading down to Texas. We almost didn't get out of Dallas yesterday morning as it decided to start sleeting right as we left for the airport. When we got there, (dfw is like it's own little city) they had already closed the ramps to the gates and had detours set up and there was one accident. This was at 5:45AM! Our flight was cancelled but we got out on a flight scheduled to leave earlier that left at the time our original flight was scheduled to leave. We had to change planes in Houston (yea got south to go north), Of course delays on the ground for us to get a gate then delays getting to the gate because a plane was in the way then of course the ice caused the train (to go from one concourse to a different concourse) to be closed so we had to leave the secured area go downstairs take an underground train then go back through security dah, dah, dah. When we finally arrived to the gate they had already closed the door. They were gracious enough to open it back up and then we sat on the flight line waiting to be de-iced. We finally arrived to NE 2hrs after scheduled. She is doing OK. We are planning on heading home to TX on Sat. morning. Driving her car. We are planning to head to Stanford for a re-eval in the next week and a half. Well, she's standing here ready to take advantage of a moment of feeling decent so we're off to sell her books back to the bookstore. I"ll be back on and catch you up as soon as I can.
 
L

Liza

New member
Hi ya'll. My mom and I got here to NE yesterday (wed). Anna was ready to get out of the hospital. She wanted to stay a couple of days in her apt. to visit some with her friends before heading down to Texas. We almost didn't get out of Dallas yesterday morning as it decided to start sleeting right as we left for the airport. When we got there, (dfw is like it's own little city) they had already closed the ramps to the gates and had detours set up and there was one accident. This was at 5:45AM! Our flight was cancelled but we got out on a flight scheduled to leave earlier that left at the time our original flight was scheduled to leave. We had to change planes in Houston (yea got south to go north), Of course delays on the ground for us to get a gate then delays getting to the gate because a plane was in the way then of course the ice caused the train (to go from one concourse to a different concourse) to be closed so we had to leave the secured area go downstairs take an underground train then go back through security dah, dah, dah. When we finally arrived to the gate they had already closed the door. They were gracious enough to open it back up and then we sat on the flight line waiting to be de-iced. We finally arrived to NE 2hrs after scheduled. She is doing OK. We are planning on heading home to TX on Sat. morning. Driving her car. We are planning to head to Stanford for a re-eval in the next week and a half. Well, she's standing here ready to take advantage of a moment of feeling decent so we're off to sell her books back to the bookstore. I"ll be back on and catch you up as soon as I can.
 
L

Liza

New member
Hi ya'll. My mom and I got here to NE yesterday (wed). Anna was ready to get out of the hospital. She wanted to stay a couple of days in her apt. to visit some with her friends before heading down to Texas. We almost didn't get out of Dallas yesterday morning as it decided to start sleeting right as we left for the airport. When we got there, (dfw is like it's own little city) they had already closed the ramps to the gates and had detours set up and there was one accident. This was at 5:45AM! Our flight was cancelled but we got out on a flight scheduled to leave earlier that left at the time our original flight was scheduled to leave. We had to change planes in Houston (yea got south to go north), Of course delays on the ground for us to get a gate then delays getting to the gate because a plane was in the way then of course the ice caused the train (to go from one concourse to a different concourse) to be closed so we had to leave the secured area go downstairs take an underground train then go back through security dah, dah, dah. When we finally arrived to the gate they had already closed the door. They were gracious enough to open it back up and then we sat on the flight line waiting to be de-iced. We finally arrived to NE 2hrs after scheduled. She is doing OK. We are planning on heading home to TX on Sat. morning. Driving her car. We are planning to head to Stanford for a re-eval in the next week and a half. Well, she's standing here ready to take advantage of a moment of feeling decent so we're off to sell her books back to the bookstore. I"ll be back on and catch you up as soon as I can.
 
K

karismom

New member
<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hi Liza we have never "spoken" but i read your entry re the eval and my heart goes out to you and yours. I have two daughters Kari 26, and Holli 20, and they both have cf. kari has had TWO tx's so far and i know it sounds crazy but we are desperate to get her a third or we will lose her before too long. I know, a THIRD? thats not possible is it? thats crazy right? NO not when the first two were "botched" in our opinion and if it means her staying here for awhile to be with her 5 year old daughter. anyway, sorry about going off on a tangent. I really wanted to say that in MY opinion having gone thru this TWICE in three years, and I know many will disagree, but I think your daughter is in the perfect shape for the tx, NOW! I will NEVER understand this business of being "too well" for the tx! For the love of GOD! BOTH times they had to wait til karis pft's were like 26 or whatever they were and she was NEAR DEATH both times, and then blamed the complications on the fact that she was so weak?! HELLO!!! I am sorry but common sense tells us that if a person has a progressive fatal disease and that NOTHING short of a heavenly miracle is going to change that fact that they are getting worse every day, that maybe the person has a BETTER chance of surviving the inevitable while they are still somewhat strong and don't weigh 90 lbs soaking wet? I am really sorry to sound so angry but I am. And I really would hate to see your girl go through what kari has. I really feel for your family and I remember all too well being in the place you are now. I just wish they would wake up and smell the coffee so to speak, and transplant earlier because undoubtedly in the near future they will realize (hopefully) that waiting until the pft's are in the 20's is not such a good idea. I wish you and your daughter all the luck in the world and will say some prayers for you.


Lisa
 
K

karismom

New member
<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hi Liza we have never "spoken" but i read your entry re the eval and my heart goes out to you and yours. I have two daughters Kari 26, and Holli 20, and they both have cf. kari has had TWO tx's so far and i know it sounds crazy but we are desperate to get her a third or we will lose her before too long. I know, a THIRD? thats not possible is it? thats crazy right? NO not when the first two were "botched" in our opinion and if it means her staying here for awhile to be with her 5 year old daughter. anyway, sorry about going off on a tangent. I really wanted to say that in MY opinion having gone thru this TWICE in three years, and I know many will disagree, but I think your daughter is in the perfect shape for the tx, NOW! I will NEVER understand this business of being "too well" for the tx! For the love of GOD! BOTH times they had to wait til karis pft's were like 26 or whatever they were and she was NEAR DEATH both times, and then blamed the complications on the fact that she was so weak?! HELLO!!! I am sorry but common sense tells us that if a person has a progressive fatal disease and that NOTHING short of a heavenly miracle is going to change that fact that they are getting worse every day, that maybe the person has a BETTER chance of surviving the inevitable while they are still somewhat strong and don't weigh 90 lbs soaking wet? I am really sorry to sound so angry but I am. And I really would hate to see your girl go through what kari has. I really feel for your family and I remember all too well being in the place you are now. I just wish they would wake up and smell the coffee so to speak, and transplant earlier because undoubtedly in the near future they will realize (hopefully) that waiting until the pft's are in the 20's is not such a good idea. I wish you and your daughter all the luck in the world and will say some prayers for you.


Lisa
 
K

karismom

New member
<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hi Liza we have never "spoken" but i read your entry re the eval and my heart goes out to you and yours. I have two daughters Kari 26, and Holli 20, and they both have cf. kari has had TWO tx's so far and i know it sounds crazy but we are desperate to get her a third or we will lose her before too long. I know, a THIRD? thats not possible is it? thats crazy right? NO not when the first two were "botched" in our opinion and if it means her staying here for awhile to be with her 5 year old daughter. anyway, sorry about going off on a tangent. I really wanted to say that in MY opinion having gone thru this TWICE in three years, and I know many will disagree, but I think your daughter is in the perfect shape for the tx, NOW! I will NEVER understand this business of being "too well" for the tx! For the love of GOD! BOTH times they had to wait til karis pft's were like 26 or whatever they were and she was NEAR DEATH both times, and then blamed the complications on the fact that she was so weak?! HELLO!!! I am sorry but common sense tells us that if a person has a progressive fatal disease and that NOTHING short of a heavenly miracle is going to change that fact that they are getting worse every day, that maybe the person has a BETTER chance of surviving the inevitable while they are still somewhat strong and don't weigh 90 lbs soaking wet? I am really sorry to sound so angry but I am. And I really would hate to see your girl go through what kari has. I really feel for your family and I remember all too well being in the place you are now. I just wish they would wake up and smell the coffee so to speak, and transplant earlier because undoubtedly in the near future they will realize (hopefully) that waiting until the pft's are in the 20's is not such a good idea. I wish you and your daughter all the luck in the world and will say some prayers for you.


Lisa
 
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