Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi everyone, Thank you so much for answering so many of my questions. I'm still scared but not as much as a few days ago. At least I'm a lot more informed and will be ready with tons of questions for the pulmo when I see him again on the 21st. I have another question that I hope you can all help me with. I had read on a site... I think it was WEBMD... that there were three forms of Bronchiectasis. I thought it said that at least one form if not two of them were reversible? Could that be correct or am I just remembering it wrong? Thanks again for all of your help. Katina in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi , I cut and pasted this from the american lung association: There are three types of bronchiectasis that describe the severity of the condition:3 Cylindrical - most common and refers to the slight widening of the respiratory passages. This type can be reversed and may be seen after acute bronchitis. Varicose - bronchial walls have both extended and collapsed portions. Cystic - most severe and involves irreversible ballooning of the bronchi. http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E & b=35009 Am I reading it wrong? Is the information incorrect? Someone.. please let me know??? Thanks, Katina in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Hi Liz and Barb, Thank you both so much for the welcome and the email. Every new thing I learn helps me understand this disease better. I still feel very much in the dark about it but at least I'm getting there. I wanted to send along my CAT scan results to see if it means anything to anyone.... IMPRESSION Mild emphysematous changes; small areas of mild bilateral upper lobe bronchiectasis with partially opacified dilated bronchus on the left side; tiny nonspecific peripheral nodular densities. 8 mm tracheal diverticulum, an entity which has noted associations with chronic cough and bronchiectasis." Does bilateral mean that I have bronchiectasis in both lungs? Does anyone know what I should be asking my Pulmo? I'm sorry to be so ignorant to this. Can I ask how long ago you were both diagnosed and your age now? Sorry if that is too personal. Thank you again for all of your help!! Katina in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Dear Katina, Welcome to the group! ) Your information is indeed correct. There are three types of bronchiectasis, and cylindrical bronchiectasis is often not considered as severe. Potentially it is reversible for some lucky adults/children. However, it would be the mildest of cases that are reversible (in my non-medical opinion). In many cases, for instance cystic fibrosis patients have or start out with cylindrical bronchiectasis. In this case, bronchiectaisis is non-reversible. Cystic fibrosis is a progressive genetic disease inflicting most commonly lungs, sinuses, and the digestive system, as well as other bodily systems. Have only read about one case of someone that had reversible bronchiectasis. I think they either posted here on this list or on the chronic lung disease forum. This man is truly blessed. :0) Although, the majority of people have non-reversible bronchiectaisis. Personally, my own doctor says once someone has bronch. they have it for life (although, articles state mild cases can sometimes be reversible), many do live for the most part normal lives. My doctor even says that a majority of people can do well with bronchiectasis. Adults with bronch. often are well enough to work, children are able to attend school, older teens and young adults are able to complete their education, attend university or other schools. and many adults, and older children do volunteer work, etc. As Sandy has stated activity, good and well-balanced nutrition, doing our treatments and living life as normally as possible is important. We cannot live in bubbles. Bronchiectasis can be unpredictable and this just keeps us on our toes! If you are able to do so swimming is one of the best activities for those with lung disease, yoga, dancing, horseback riding, etc are all helpful. The bottom line is that bronchiectasis effects everybody differently. We need to stay on top of it in order to keep it at bay. Mild does not always stay mild which is why labels when applied by doctors can be bad, because these physicians than may not take our conditions, as seriously, as they ought to, however even if bronch. progresses it can be treatable. Airway clearance and chestphyiotherapy are vital, as are treating bronchial infections early, and doing sputum samples, and pulmonary function tests in my opinion are all important in keeping track of how our lungs are functioning, as well, as obtaining the best pulmonologist possible. In my case, my infectious disease specialist has been vital. Infectious disaese (ID) specialists that have expertise in cystic fibrosis and bronchiectasis can be helpful to seek out, as they have the best expertise in my experience in treating our bacterial infections. Mine has been a lifesaver, as I have not hit the pulmonologist jackpot yet! Hope this is helpful, Look forward to hearing from you, but I have to finish baking some whoopie pies (cookies). Hugs:0) Liz in Nova Scotia, Canada e-mail:maryholt12@... or lungsformary@... Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0) carepages.com name:maryelizabeth ) " Miracles happen with love..... " ..... Please support your local children's hospital.... and " Give with all your might! " http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ ) " I don't give in, I don't give up, and I don't take no for an answer. " ~Doris ~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Hi Katina, I was diagnosed eight years ago. I’m 53 now—although when I get together with my friends from high school, we all act like we’re 17. Barb Re: Katina Hi Liz and Barb, Thank you both so much for the welcome and the email. Every new thing I learn helps me understand this disease better. I still feel very much in the dark about it but at least I'm getting there. I wanted to send along my CAT scan results to see if it means anything to anyone.... IMPRESSION Mild emphysematous changes; small areas of mild bilateral upper lobe bronchiectasis with partially opacified dilated bronchus on the left side; tiny nonspecific peripheral nodular densities. 8 mm tracheal diverticulum, an entity which has noted associations with chronic cough and bronchiectasis. " Does bilateral mean that I have bronchiectasis in both lungs? Does anyone know what I should be asking my Pulmo? I'm sorry to be so ignorant to this. Can I ask how long ago you were both diagnosed and your age now? Sorry if that is too personal. Thank you again for all of your help!! Katina in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Have only read about one case of someone that had > reversible bronchiectasis. (yes this is the man) blessed i am.. thanks, i still keep up with the reading of the bronch group --- Holt wrote: > Dear Katina, > > Welcome to the group! ) > > Your information is indeed correct. There are three > types of bronchiectasis, and cylindrical > bronchiectasis is often not considered as severe. > Potentially it is reversible for some lucky > adults/children. However, it would be the mildest of > cases that are reversible (in my non-medical > opinion). > In many cases, for instance cystic fibrosis patients > have or start out with cylindrical bronchiectasis. > In > this case, bronchiectaisis is non-reversible. Cystic > fibrosis is a progressive genetic disease inflicting > most commonly lungs, sinuses, and the digestive > system, as well as other bodily systems. > > Have only read about one case of someone that had > reversible bronchiectasis. I think they either > posted > here on this list or on the chronic lung disease > forum. This man is truly blessed. :0) > > Although, the majority of people have non-reversible > bronchiectaisis. Personally, my own doctor says once > someone has bronch. they have it for life (although, > articles state mild cases can sometimes be > reversible), many do live for the most part normal > lives. My doctor even says that a majority of people > can do well with bronchiectasis. Adults with > bronch. > often are well enough to work, children are able to > attend school, older teens and young adults are able > to complete their education, attend university or > other schools. and many adults, and older children > do > volunteer work, etc. As Sandy has stated activity, > good and well-balanced nutrition, doing our > treatments > and living life as normally as possible is > important. > We cannot live in bubbles. Bronchiectasis can be > unpredictable and this just keeps us on our toes! > > If you are able to do so swimming is one of the best > activities for those with lung disease, yoga, > dancing, > horseback riding, etc are all helpful. > > The bottom line is that bronchiectasis effects > everybody differently. We need to stay on top of it > in > order to keep it at bay. Mild does not always stay > mild which is why labels when applied by doctors can > be bad, because these physicians than may not take > our > conditions, as seriously, as they ought to, however > even if bronch. progresses it can be treatable. > > Airway clearance and chestphyiotherapy are vital, as > are treating bronchial infections early, and doing > sputum samples, and pulmonary function tests in my > opinion are all important in keeping track of how > our > lungs are functioning, as well, as obtaining the > best > pulmonologist possible. In my case, my infectious > disease specialist has been vital. Infectious > disaese > (ID) specialists that have expertise in cystic > fibrosis and bronchiectasis can be helpful to seek > out, as they have the best expertise in my > experience > in treating our bacterial infections. Mine has been > a > lifesaver, as I have not hit the pulmonologist > jackpot > yet! > > Hope this is helpful, > > Look forward to hearing from you, but I have to > finish > baking some whoopie pies (cookies). > > Hugs:0) > Liz in Nova Scotia, Canada > > > > e-mail:maryholt12@... or lungsformary@... > > Pre-Lung Transplant Journey - For updates please > visit my carepage and leave a message. Thank you!:0) > carepages.com name:maryelizabeth > > ) " Miracles happen with love..... " ..... Please > support your local children's hospital.... and " Give > with all your might! " > http://iwkfoundation.org/ > )Visit.... Children's Miracle Network.... > http://www.cmn.org/ ) > > " I don't give in, I don't give up, and I don't take > no for an answer. " > ~Doris ~ > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 how did i do it i don,t know ,colloidal silver,tea tree oil,nebs,pulmizim, running when i could and not jogging, running my but to the ground ...it was either this goes away are i go away ....there was no other choice....and yes i had the vest system and also had two cf test... --- claudia henao wrote: > hi, > as far as i know, there is no way to reverse any > form of bronchiectasis. if there is, i would > definitely like to know about it! > claudia > > > --------------------------------- > Do you Yahoo!? > Get on board. You're invited to try the new Yahoo! > Mail Beta. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Hi , did you say that you had the cylindrical (?) type of bronch? Was your diagnosis ever confirmed by CT scan? Could you elaborate on your DX? Sorry to be a doubting but we have to be careful that people do not feel bad when having done all of the things you did, they have not had the same results because their lungs are more affected. As you know, a feeling of hopelessness can characterise this condition and it is very easy to get depressed if you do everything and still get ill. Now, perhaps if we all pray loudly lol! Carole. > > > hi, > > as far as i know, there is no way to reverse any > > form of bronchiectasis. if there is, i would > > definitely like to know about it! > > claudia > > > > > > --------------------------------- > > Do you Yahoo!? > > Get on board. You're invited to try the new Yahoo! > > Mail Beta. > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 report said mild bronc in left lower lopes did a long with other stuff....i had ever culture there was to have with no dx blood work from hell and my lung doc did not know what to do ...also had ever antibodic they could give, even tobi.....i had 3 ct ....as i can tell doc,s don,t know nothing about this stuff or can,t do a dam thing....i would check for acid reflux this can cause alot of problems in the lungs .. and like i said before, this was going away are i was ....in plan terms i was going to put a bullet in my head... i ran when i was sick and worked my asss to the ground when i was sick(working my lungs).. if this is what worked fine ,i dont know ... there was a time when i was in bed for a month dead sick and weak...i was sick for over a 2 years...we also have to be careful to get this people going ( get mad get angry , and get to work if it dosn,t work and you die , you gave it your best... this is all my view i say do what you have to do...and i wish every one the best of health --- Carole wrote: > Hi , did you say that you had the cylindrical > (?) type of > > > bronch? Was your diagnosis ever confirmed by CT > scan? Could you > > elaborate on your DX? > > > > > > Sorry to be a doubting but we have to be > careful that people do > > not feel bad when having done all of the things you > did, they have not > > had the same results because their lungs are more > affected. > > > As you know, a feeling of hopelessness can > characterise this > > condition and it is very easy to get depressed if > you do everything > > and still get ill. Now, perhaps if we all pray > loudly lol! > > Carole. > > > > > > > > hi, > > > as far as i know, there is no way to reverse any > > > form of bronchiectasis. if there is, i would > > > definitely like to know about it! > > > claudia > > > > > > > > > --------------------------------- > > > Do you Yahoo!? > > > Get on board. You're invited to try the new > Yahoo! > > > Mail Beta. > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Dear y, I will agree with you about many lung specialists knowing nothing. Some are arrogant good for nothing nincompoops, and sometimes certain doctors are not the most honest lot. Through the years, I have been to many respiratory specialists and it is always the same old story. After waiting a full nine months for one of my appointments that respirologist asked me why I was there (and I don't mean asking about symptoms, etc ... she actually wondered " why " I had bothered to come to the appointment, was cold, and you get the picture! After seeing her, I am not sure why I had, either, as it was one of many wasted trips. ) D-oh! Transplant respirologist in Toronto even told my Dad and I on the telephone that lung infections are no bid deal. Yeah, right, try having frequent pneumonia, etc... and see if she thinks its nothing! Arghhhhh!!! Many respirologists think that bronchiectasis is nothing to be really followed or concerned about. I have recently decided not to ever go back to the respirologist that was following me. he never even ordered tests or meds or anything for that matter. Told me that my family doctor could do it all, but the family doctor wanted the respirologist to intervene and help him! All I know is that my lungs are quite bad and my ID specialist and GP would like to get me on a lung transplant list. I think the damage is more or less caused by negligent care by some doctors. I realise there are some good ones out there, but it seems very hard to find them. A lady told me today that she had the same problems with a Halifax respirologist. He told her that her lungs are normal! She still does not know what is wrong with them; her family doctor cannot get over it and says the lungs are not normal. Anyhow..... I can see where you are coming from! I will agree with you about many lung specialists knowing nothing. Some are arrogant good for nothing nincompoops. Through the years, I have been to many respiratory specialists and it is always the same old story. After waiting a full nine months for one of my appointments that respirologist asked me why I was there (and I don't mean asking about symptoms, etc ... she actually wondered " why " I had bothered to come to the appointment, was cold, and you get the picture! After seeing her, I am not sure why I had, either, as it was one of many wasted trips. ) D-oh! Transplant respirologist in Toronto even told my Dad and I on the telephone that lung infections are no bid deal. Yeah, right, try having frequent pneumonia, etc... and see if she thinks its nothing! Arghhhhh!!! Many respirologists think that bronchiectasis is nothing to be really followed or concerned about. I have recently decided not to ever go back to the respirologist that was following me. he never even ordered tests or meds or anything for that matter. Told me that my family doctor could do it all, but the family doctor wanted the respirologist to intervene and help him! Sometimes, I wish that my family and now me had put all the money spent on travelling back and forth to Halifax, Toronto, etc… together and saved it for something we could enjoy. A nice trip to Disneyland … would be a prime example or a cruise, etc, or just visiting everyone back in forth at least once in Toronto (brother and family)and California (brother and two nieces). We would have received so much more had the moneyt saved been spent on trips, as opposed to going to various hospital and doctors (much of the time all for nothing) and could have created some happy memories as a family, too. Hugs:0) Liz in Nova Scotia, Canada e-mail:maryholt12@... or lungsformary@... Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0) carepages.com name:maryelizabeth ) " Miracles happen with love..... " ..... Please support your local children's hospital.... and " Give with all your might! " http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ ) " I don't give in, I don't give up, and I don't take no for an answer. " ~Doris ~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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