Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi All To those parents with children who have had severe reflux and recurrent pneumonia's. Q. Does the lung tissue repair itself in time, is the damage reversible? This is something I have never thought of to ask when I go to the respiratory clinic, probably because I am always worrying which type of operation to have!! I am just wondering if this next operation works will Amelie's lungs then show signs of improving or is it a case of once the damage is done its done!! thanks Les x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Les, has lung damage due to the TE fistula she had. It wasn't detected until just after she turned 2 yrs old. They told us that we would have to wait and see. Sometimes the damage can be reversible, but I think it depends on the extent of damage. In our case, also has psuedomonas in her lungs and they have since told us that the damage cannot be reversed and could actually get worse. That is only because of her psuedomonas and depends on how often it flares up. I really think it all depends on the extent of damage and is really just a waiting game. I also think it depends on the child's health after the problem is fixed. If Amelie stays healthy after everything is repaired, I would think that it may be reversible. Hope this helps. Mom to 3.5 yrs CHARGE, Marissa 5.5 yrs, and Dalani 10.5 yrs Amelie Chan wrote: Hi All To those parents with children who have had severe reflux and recurrent pneumonia's. Q. Does the lung tissue repair itself in time, is the damage reversible? This is something I have never thought of to ask when I go to the respiratory clinic, probably because I am always worrying which type of operation to have!! I am just wondering if this next operation works will Amelie's lungs then show signs of improving or is it a case of once the damage is done its done!! thanks Les x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 mine r great now although there r times when theyu do have to be careful but they got better once i stopped my pnomoias i think the reflux doesnt affect ti now but occasionly ill have a chest infection but not that often now > > Les, > > has lung damage due to the TE fistula she had. It wasn't detected > until just after she turned 2 yrs old. They told us that we would have to > wait and see. Sometimes the damage can be reversible, but I think it depends > on the extent of damage. In our case, also has psuedomonas in her > lungs and they have since told us that the damage cannot be reversed and > could actually get worse. That is only because of her psuedomonas and > depends on how often it flares up. > > I really think it all depends on the extent of damage and is really just a > waiting game. I also think it depends on the child's health after the > problem is fixed. If Amelie stays healthy after everything is repaired, I > would think that it may be reversible. Hope this helps. > > > Mom to 3.5 yrs CHARGE, Marissa 5.5 yrs, and Dalani 10.5 yrs > > > > > > Amelie Chan <amelie.m.chan@... <amelie.m.chan%40googlemail.com>> > wrote: > Hi All > > To those parents with children who have had severe reflux and recurrent > pneumonia's. > > Q. Does the lung tissue repair itself in time, is the damage reversible? > This is something I have never thought of to ask when I go to the > respiratory clinic, probably because I am always worrying which type of > operation to have!! > I am just wondering if this next operation works will Amelie's lungs then > show signs of improving or is it a case of once the damage is done its > done!! > > thanks Les x > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Thats great news Ellen, and hopefully Amelie will follow suit! hugs Les x > > mine r great now although there r times when theyu do have to be > careful but > they got better once i stopped my pnomoias i think the reflux doesnt > affect > ti now but occasionly ill have a chest infection but not that often now > > > On 28/08/06, Lee <missbwith3@... <missbwith3%40yahoo.com>> > wrote: > > > > Les, > > > > has lung damage due to the TE fistula she had. It wasn't detected > > until just after she turned 2 yrs old. They told us that we would have > to > > wait and see. Sometimes the damage can be reversible, but I think it > depends > > on the extent of damage. In our case, also has psuedomonas in her > > lungs and they have since told us that the damage cannot be reversed and > > could actually get worse. That is only because of her psuedomonas and > > depends on how often it flares up. > > > > I really think it all depends on the extent of damage and is really just > a > > waiting game. I also think it depends on the child's health after the > > problem is fixed. If Amelie stays healthy after everything is repaired, > I > > would think that it may be reversible. Hope this helps. > > > > > > Mom to 3.5 yrs CHARGE, Marissa 5.5 yrs, and Dalani 10.5 yrs > > > > > > > > > > > > Amelie Chan <amelie.m.chan@...<amelie.m.chan%40googlemail.com>< > amelie.m.chan%40googlemail.com>> > > > wrote: > > Hi All > > > > To those parents with children who have had severe reflux and recurrent > > pneumonia's. > > > > Q. Does the lung tissue repair itself in time, is the damage reversible? > > This is something I have never thought of to ask when I go to the > > respiratory clinic, probably because I am always worrying which type of > > operation to have!! > > I am just wondering if this next operation works will Amelie's lungs > then > > show signs of improving or is it a case of once the damage is done its > > done!! > > > > thanks Les x > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Thanks for this its encouraging and something I will ask at my next respiratory appointment, based on her CT, I am sure they will have an idea how much or bad the damage is, I have not heard of psuedomonas that has had what exactly are they?? Amelie has had a pleural effusion and RSV positive Bronchiolitis and they have said she is a very high risk for the GA not so much the surgical aspect, but i think they prepare you for the worse in any surgery. Just read Ellen's lungs are good and shes 21 so thats promising, i love these adult chargers they cheer me up! We also need to have some prenevar and synagis jabs before winter but not around the surgery dates so I am about to organise this. hugs Les > > Les, > > has lung damage due to the TE fistula she had. It wasn't detected > until just after she turned 2 yrs old. They told us that we would have to > wait and see. Sometimes the damage can be reversible, but I think it depends > on the extent of damage. In our case, also has psuedomonas in her > lungs and they have since told us that the damage cannot be reversed and > could actually get worse. That is only because of her psuedomonas and > depends on how often it flares up. > > I really think it all depends on the extent of damage and is really just a > waiting game. I also think it depends on the child's health after the > problem is fixed. If Amelie stays healthy after everything is repaired, I > would think that it may be reversible. Hope this helps. > > > Mom to 3.5 yrs CHARGE, Marissa 5.5 yrs, and Dalani 10.5 yrs > > > > > > Amelie Chan <amelie.m.chan@... <amelie.m.chan%40googlemail.com>> > wrote: > Hi All > > To those parents with children who have had severe reflux and recurrent > pneumonia's. > > Q. Does the lung tissue repair itself in time, is the damage reversible? > This is something I have never thought of to ask when I go to the > respiratory clinic, probably because I am always worrying which type of > operation to have!! > I am just wondering if this next operation works will Amelie's lungs then > show signs of improving or is it a case of once the damage is done its > done!! > > thanks Les x > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 yep mien were rpety crappy when i had my effusion they said i only had mien coz of a central line surgery but locec helped that all coem back to nromal again that was many years ago > > Thats great news Ellen, and hopefully Amelie will follow suit! hugs Les > x > > > On 28/08/06, ellen howe <ellen.howe@... <ellen.howe%40gmail.com>> > wrote: > > > > mine r great now although there r times when theyu do have to be > > careful but > > they got better once i stopped my pnomoias i think the reflux doesnt > > affect > > ti now but occasionly ill have a chest infection but not that often now > > > > > > On 28/08/06, Lee <missbwith3@... <missbwith3%40yahoo.com><missbwith3% > 40yahoo.com>> > > > wrote: > > > > > > Les, > > > > > > has lung damage due to the TE fistula she had. It wasn't > detected > > > until just after she turned 2 yrs old. They told us that we would have > > to > > > wait and see. Sometimes the damage can be reversible, but I think it > > depends > > > on the extent of damage. In our case, also has psuedomonas in > her > > > lungs and they have since told us that the damage cannot be reversed > and > > > could actually get worse. That is only because of her psuedomonas and > > > depends on how often it flares up. > > > > > > I really think it all depends on the extent of damage and is really > just > > a > > > waiting game. I also think it depends on the child's health after the > > > problem is fixed. If Amelie stays healthy after everything is > repaired, > > I > > > would think that it may be reversible. Hope this helps. > > > > > > > > > Mom to 3.5 yrs CHARGE, Marissa 5.5 yrs, and Dalani 10.5 yrs > > > > > > > > > > > > > > > > > > Amelie Chan <amelie.m.chan@...<amelie.m.chan%40googlemail.com> > <amelie.m.chan%40googlemail.com>< > > amelie.m.chan%40googlemail.com>> > > > > > > wrote: > > > Hi All > > > > > > To those parents with children who have had severe reflux and > recurrent > > > pneumonia's. > > > > > > Q. Does the lung tissue repair itself in time, is the damage > reversible? > > > This is something I have never thought of to ask when I go to the > > > respiratory clinic, probably because I am always worrying which type > of > > > operation to have!! > > > I am just wondering if this next operation works will Amelie's lungs > > then > > > show signs of improving or is it a case of once the damage is done its > > > done!! > > > > > > thanks Les x > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Les, Psuedomonas is a bacterial that is actually found everywhere even water. Most people will not get it, but when someone does get it, they will always have it. They found that was colonized with it and said that she may never have a problem with it, but because of her low immune system, she does have problems. Most people with CF will get it eventually. Because she has the lung damage, it is an issue for her. When she has a flare up, she has to be on 2-4 week IV antibiotics and inhaled antibiotics for 4-6 weeks. They said that she probably got it when she was on the vent at one point, but I know that she could have gotten it at any point during the many hospitalizations she had. For it is in her lungs, but it can affect other systems as well. Amelie Chan wrote: Thanks for this its encouraging and something I will ask at my next respiratory appointment, based on her CT, I am sure they will have an idea how much or bad the damage is, I have not heard of psuedomonas that has had what exactly are they?? Amelie has had a pleural effusion and RSV positive Bronchiolitis and they have said she is a very high risk for the GA not so much the surgical aspect, but i think they prepare you for the worse in any surgery. Just read Ellen's lungs are good and shes 21 so thats promising, i love these adult chargers they cheer me up! We also need to have some prenevar and synagis jabs before winter but not around the surgery dates so I am about to organise this. hugs Les > > Les, > > has lung damage due to the TE fistula she had. It wasn't detected > until just after she turned 2 yrs old. They told us that we would have to > wait and see. Sometimes the damage can be reversible, but I think it depends > on the extent of damage. In our case, also has psuedomonas in her > lungs and they have since told us that the damage cannot be reversed and > could actually get worse. That is only because of her psuedomonas and > depends on how often it flares up. > > I really think it all depends on the extent of damage and is really just a > waiting game. I also think it depends on the child's health after the > problem is fixed. If Amelie stays healthy after everything is repaired, I > would think that it may be reversible. Hope this helps. > > > Mom to 3.5 yrs CHARGE, Marissa 5.5 yrs, and Dalani 10.5 yrs > > > > > > Amelie Chan <amelie.m.chan@... <amelie.m.chan%40googlemail.com>> > wrote: > Hi All > > To those parents with children who have had severe reflux and recurrent > pneumonia's. > > Q. Does the lung tissue repair itself in time, is the damage reversible? > This is something I have never thought of to ask when I go to the > respiratory clinic, probably because I am always worrying which type of > operation to have!! > I am just wondering if this next operation works will Amelie's lungs then > show signs of improving or is it a case of once the damage is done its > done!! > > thanks Les x > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 brenda is right its everuwhere nto jsut in the lungs though i get it in the ears soemtimes tpo mostly my right ear where the hole is in the ear drum a lot of my cf friends had this think and quite a few died form it well not from it but it didnt help its really leeful though i know that > > Les, > > Psuedomonas is a bacterial that is actually found everywhere even water. > Most people will not get it, but when someone does get it, they will always > have it. They found that was colonized with it and said that she may > never have a problem with it, but because of her low immune system, she does > have problems. Most people with CF will get it eventually. Because she has > the lung damage, it is an issue for her. When she has a flare up, she has to > be on 2-4 week IV antibiotics and inhaled antibiotics for 4-6 weeks. They > said that she probably got it when she was on the vent at one point, but I > know that she could have gotten it at any point during the many > hospitalizations she had. For it is in her lungs, but it can affect > other systems as well. > > > > > > Amelie Chan <amelie.m.chan@... <amelie.m.chan%40googlemail.com>> > wrote: > Thanks for this its encouraging and something I will ask at my next > respiratory appointment, based on her CT, I am sure they will have an idea > how much or bad the damage is, I have not heard of psuedomonas that > has had what exactly are they?? > Amelie has had a pleural effusion and RSV positive Bronchiolitis and they > have said she is a very high risk for the GA not so much the surgical > aspect, but i think they prepare you for the worse in any surgery. Just > read > Ellen's lungs are good and shes 21 so thats promising, i love these adult > chargers they cheer me up! > We also need to have some prenevar and synagis jabs before winter but not > around the surgery dates so I am about to organise this. > hugs Les > > On 28/08/06, Lee <missbwith3@... <missbwith3%40yahoo.com>> > wrote: > > > > Les, > > > > has lung damage due to the TE fistula she had. It wasn't detected > > until just after she turned 2 yrs old. They told us that we would have > to > > wait and see. Sometimes the damage can be reversible, but I think it > depends > > on the extent of damage. In our case, also has psuedomonas in her > > lungs and they have since told us that the damage cannot be reversed and > > could actually get worse. That is only because of her psuedomonas and > > depends on how often it flares up. > > > > I really think it all depends on the extent of damage and is really just > a > > waiting game. I also think it depends on the child's health after the > > problem is fixed. If Amelie stays healthy after everything is repaired, > I > > would think that it may be reversible. Hope this helps. > > > > > > Mom to 3.5 yrs CHARGE, Marissa 5.5 yrs, and Dalani 10.5 yrs > > > > > > > > > > > > Amelie Chan <amelie.m.chan@...<amelie.m.chan%40googlemail.com>< > amelie.m.chan%40googlemail.com>> > > wrote: > > Hi All > > > > To those parents with children who have had severe reflux and recurrent > > pneumonia's. > > > > Q. Does the lung tissue repair itself in time, is the damage reversible? > > This is something I have never thought of to ask when I go to the > > respiratory clinic, probably because I am always worrying which type of > > operation to have!! > > I am just wondering if this next operation works will Amelie's lungs > then > > show signs of improving or is it a case of once the damage is done its > > done!! > > > > thanks Les x > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 I believe that lung tissue can repair itself over time if the child is young. I remember Ethan's pulmonologist telling us this. Ethan developed chronic lung disease from aspiration and ended up getting a trach at 6 months old. This was a good thing for him and his lungs have repaired itself over time (he is now 4 yrs old). He still has the trach mainly due to secretion issues and he still requires oxygen at times when he is sick due to his asthma. Jody Jody - mom to Ethan (ChARGE) and --------------------------------- Stay in the know. Pulse on the new Yahoo.com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Thanks Jody, i have often wondered why Amelie has not been trached, what is the criteria, she has constant secretions and suction! Les x > > I believe that lung tissue can repair itself over time if the child is > young. I remember Ethan's pulmonologist telling us this. Ethan developed > chronic lung disease from aspiration and ended up getting a trach at 6 > months old. This was a good thing for him and his lungs have repaired itself > over time (he is now 4 yrs old). He still has the trach mainly due to > secretion issues and he still requires oxygen at times when he is sick due > to his asthma. > > Jody > > Jody - mom to Ethan (ChARGE) and > > --------------------------------- > Stay in the know. Pulse on the new Yahoo.com <http://yahoo.com/>. Check it > out. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 my belief for not traching is they dont wanna put her trough another op that might do soemthing to her LOL > > Thanks Jody, i have often wondered why Amelie has not been trached, > what is > the criteria, she has constant secretions and suction! > Les x > > > On 30/08/06, Jody Wolfe <jdwolfe4@... <jdwolfe4%40yahoo.com>> wrote: > > > > I believe that lung tissue can repair itself over time if the child is > > young. I remember Ethan's pulmonologist telling us this. Ethan developed > > chronic lung disease from aspiration and ended up getting a trach at 6 > > months old. This was a good thing for him and his lungs have repaired > itself > > over time (he is now 4 yrs old). He still has the trach mainly due to > > secretion issues and he still requires oxygen at times when he is sick > due > > to his asthma. > > > > Jody > > > > Jody - mom to Ethan (ChARGE) and > > > > --------------------------------- > > Stay in the know. Pulse on the new Yahoo.com <http://yahoo.com/> < > http://yahoo.com/>. Check it > > > out. > > > > > > Quote Link to comment Share on other sites More sharing options...
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