Hi, Transplant is such a difficult decision. Anna was ready. She told us. She'd had a difficult first semester at college and couldn't complete it due to repeated hospitalizations before Thanksgiving. She tried again the following fall and the same thing happened. Her quality of life was definantely down. She pretty much had bad days and not so bad days. She was only on oxygen at night that second year. She tried, she really did. She'd get IV antibiotics for three weeks, get done and usually before the 6wk follow-up she'd be back in feeling badly and end up right back on them. It didn't matter whether she was at home with us or away at school. Her pfts were anywhere from 32 - 42 depending on how recent her antibiotics. When they decided she was ready, it was just about two months from her eval. when they said she wasn't ready yet. This time her pfts wouldn't come up any higher than 27.
Anna saw her old lungs and we found out the pathologist had commented "how was this girl breathing?" It was definantely time. She was ready and just wanted some new lungs in the months before she was listed.
If your daughter doesn't feel she is ready, then don't let the doctors pressure her. But she does need to consider how long their wait time avg. is. How long has she had such low pfts? What is her activity level? You say she feels good most days or every other month. Does she get to do most everything she wants to do in her daily life? There are many questions they will ask, not just look at her tests. I think only she can know when she is ready to be listed.
As for diabetes, most people get it post tx but not all. Anna was CFrD so it didn't matter.
I wish you all the luck. I don't think I offered much suggestion wise, sorry.
Anna saw her old lungs and we found out the pathologist had commented "how was this girl breathing?" It was definantely time. She was ready and just wanted some new lungs in the months before she was listed.
If your daughter doesn't feel she is ready, then don't let the doctors pressure her. But she does need to consider how long their wait time avg. is. How long has she had such low pfts? What is her activity level? You say she feels good most days or every other month. Does she get to do most everything she wants to do in her daily life? There are many questions they will ask, not just look at her tests. I think only she can know when she is ready to be listed.
As for diabetes, most people get it post tx but not all. Anna was CFrD so it didn't matter.
I wish you all the luck. I don't think I offered much suggestion wise, sorry.