Transplantmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kitomd21</b></i>
I suppose the other part of my question pertains to what these children actually die from? I didn't want to ask that question initially because it's very difficult for me to think of my daughter (or anyone else's) dying - especially while still a child. I know each CF individual is different and that there isn't a universal CF progression, but is it most likely from a lung infection? Liver failure? My daughter's doctors seem so promising in terms of managing CF and doing routine cultures to keep bacterial colonization at bay...but I guess I just haven't grasped why children are still dying if we've come so far in treating CF...It may be understandably difficult for some of you to answer this question directly, but I had to ask.</end quote></div>
I have often wondered myself what children of CF die from (lung or digestion or combo) and then I joined a bunch of CF sites and groups and I think I found my answer. It seems as though that sadly most of the children that I have read about who have passed from CF have passed because of lung problems. A lot because of infections that just wouldnt go away and then the lungs just kind of "give up." A few had already had a lung Tx and then went into chronic rejection and lost their life. It's really sad, but this is what I have seen.
I suppose the other part of my question pertains to what these children actually die from? I didn't want to ask that question initially because it's very difficult for me to think of my daughter (or anyone else's) dying - especially while still a child. I know each CF individual is different and that there isn't a universal CF progression, but is it most likely from a lung infection? Liver failure? My daughter's doctors seem so promising in terms of managing CF and doing routine cultures to keep bacterial colonization at bay...but I guess I just haven't grasped why children are still dying if we've come so far in treating CF...It may be understandably difficult for some of you to answer this question directly, but I had to ask.</end quote></div>
I have often wondered myself what children of CF die from (lung or digestion or combo) and then I joined a bunch of CF sites and groups and I think I found my answer. It seems as though that sadly most of the children that I have read about who have passed from CF have passed because of lung problems. A lot because of infections that just wouldnt go away and then the lungs just kind of "give up." A few had already had a lung Tx and then went into chronic rejection and lost their life. It's really sad, but this is what I have seen.