Hi Laura, I posted about the eval. on the transplant section. It's the about Good? or Bad? In short, they said she wasn't sick enough. We'll go back March 1st for follow-up. They did say that they don't just say "we don't think you're ready, see ya later", that they do follow up every three months and like to keep posted with how things are going back home. I told them I'd be sure to have her docs fax them every time she gets sick, hospitalized, and put on IV antibiotics including pft's.
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I'm still fuming! 17 hrs later.
- Thread starter Liza
- Start date
caregiverlisa
New member
I am a mom of a daughter who has cf and I have learned that I will speak my mind and nobody will push us aside. I have had to argue with a certain doctor at Doernbechers to get my point across and how I expect to be treated. Nobody deserves to be put through the wringers. Next time I would turn the tables around I let someone know how would you feel if your child had a deadly disease and you were turned away how would you feel. If that don't work then get his name and wait till you get home and report him to his supervisor. Then let go. You can't be hung up on your anger or life will eat you alive. Believe me please I know I already lost one child to an illness called Luekemia not looking forward to another.........
Take care of your child she comes first and those hugs from them always helps ease the stress.
Take care of your child she comes first and those hugs from them always helps ease the stress.
caregiverlisa
New member
I am a mom of a daughter who has cf and I have learned that I will speak my mind and nobody will push us aside. I have had to argue with a certain doctor at Doernbechers to get my point across and how I expect to be treated. Nobody deserves to be put through the wringers. Next time I would turn the tables around I let someone know how would you feel if your child had a deadly disease and you were turned away how would you feel. If that don't work then get his name and wait till you get home and report him to his supervisor. Then let go. You can't be hung up on your anger or life will eat you alive. Believe me please I know I already lost one child to an illness called Luekemia not looking forward to another.........
Take care of your child she comes first and those hugs from them always helps ease the stress.
Take care of your child she comes first and those hugs from them always helps ease the stress.
caregiverlisa
New member
I am a mom of a daughter who has cf and I have learned that I will speak my mind and nobody will push us aside. I have had to argue with a certain doctor at Doernbechers to get my point across and how I expect to be treated. Nobody deserves to be put through the wringers. Next time I would turn the tables around I let someone know how would you feel if your child had a deadly disease and you were turned away how would you feel. If that don't work then get his name and wait till you get home and report him to his supervisor. Then let go. You can't be hung up on your anger or life will eat you alive. Believe me please I know I already lost one child to an illness called Luekemia not looking forward to another.........
Take care of your child she comes first and those hugs from them always helps ease the stress.
Take care of your child she comes first and those hugs from them always helps ease the stress.
If I could have controlled my temper, I would have first asked those on the cart to step off in solidarity for my terminal condition that requires an eminent lung transplant for which I am currently being listed. If I received blank stares, I would have required security to intervene and also demanded an airport manager. In addition, while I was waiting I would have feigned severe congestion and would have expectorated something large and green for them. I might have even "collapsed" to make my point.
Grendel
Grendel
If I could have controlled my temper, I would have first asked those on the cart to step off in solidarity for my terminal condition that requires an eminent lung transplant for which I am currently being listed. If I received blank stares, I would have required security to intervene and also demanded an airport manager. In addition, while I was waiting I would have feigned severe congestion and would have expectorated something large and green for them. I might have even "collapsed" to make my point.
Grendel
Grendel
If I could have controlled my temper, I would have first asked those on the cart to step off in solidarity for my terminal condition that requires an eminent lung transplant for which I am currently being listed. If I received blank stares, I would have required security to intervene and also demanded an airport manager. In addition, while I was waiting I would have feigned severe congestion and would have expectorated something large and green for them. I might have even "collapsed" to make my point.
Grendel
Grendel