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oh man! a 20% drop??? what is your pft now? i think that is what brian is having the hardest time with. even though his baseline 37-40 was low, he had gotten there so slowly and been there so long that he was fine there. so a 10% drop in a month has been a huge adjustment for him. luckily he...

oh man! a 20% drop??? what is your pft now? i think that is what brian is having the hardest time with. even though his baseline 37-40 was low, he had gotten there so slowly and been there so long that he was fine there. so a 10% drop in a month has been a huge adjustment for him. luckily he...

oh man! a 20% drop??? what is your pft now? i think that is what brian is having the hardest time with. even though his baseline 37-40 was low, he had gotten there so slowly and been there so long that he was fine there. so a 10% drop in a month has been a huge adjustment for him. luckily he...

Brian had follow up today...was pretty worried. But his pft was up to 36%!!! he still feels more sob than before, but his baseline is 37-40! the dr wants us to see an infectious disease specialist in a cpl wks and he is going to get a port placed in the next month and we are starting the work up...

Brian had follow up today...was pretty worried. But his pft was up to 36%!!! he still feels more sob than before, but his baseline is 37-40! the dr wants us to see an infectious disease specialist in a cpl wks and he is going to get a port placed in the next month and we are starting the work up...

Brian had follow up today...was pretty worried. But his pft was up to 36%!!! he still feels more sob than before, but his baseline is 37-40! the dr wants us to see an infectious disease specialist in a cpl wks and he is going to get a port placed in the next month and we are starting the work up...

Hi Jenny! I just wanted to tell you that you should NEVER EVER feel guilty about wanting love!! EVER!! my husband has said that before too, we have been together 8 yrs. you say you worry about what may come in the next 10 yrs, but the next 10 yrs may stay stable. none of us know!! we have had...

Hi Jenny! I just wanted to tell you that you should NEVER EVER feel guilty about wanting love!! EVER!! my husband has said that before too, we have been together 8 yrs. you say you worry about what may come in the next 10 yrs, but the next 10 yrs may stay stable. none of us know!! we have had...

Hi Jenny! I just wanted to tell you that you should NEVER EVER feel guilty about wanting love!! EVER!! my husband has said that before too, we have been together 8 yrs. you say you worry about what may come in the next 10 yrs, but the next 10 yrs may stay stable. none of us know!! we have had...

gggrrrrr....lol. so Lief...you still have that bug and are still treating it? and Jonathan, do you have that germ too? brian has had it for over a year now and it has been awful!! It's like he just can't stay well now! I don't know if they just haven't gotten the right combo of meds, or what. he...

gggrrrrr....lol. so Lief...you still have that bug and are still treating it? and Jonathan, do you have that germ too? brian has had it for over a year now and it has been awful!! It's like he just can't stay well now! I don't know if they just haven't gotten the right combo of meds, or what. he...

gggrrrrr....lol. so Lief...you still have that bug and are still treating it? and Jonathan, do you have that germ too? brian has had it for over a year now and it has been awful!! It's like he just can't stay well now! I don't know if they just haven't gotten the right combo of meds, or what. he...

ok, the new germ brian has that we can't seem to get rid of is called alcaligenes. anyone ever heard of this?? in the hosp he was on coliston for 12 days and high dose oral bactrim. his pft went down a percent.... so just wondering if anyone else has had this germ and has had success getting rid...

ok, the new germ brian has that we can't seem to get rid of is called alcaligenes. anyone ever heard of this?? in the hosp he was on coliston for 12 days and high dose oral bactrim. his pft went down a percent.... so just wondering if anyone else has had this germ and has had success getting rid...

ok, the new germ brian has that we can't seem to get rid of is called alcaligenes. anyone ever heard of this?? in the hosp he was on coliston for 12 days and high dose oral bactrim. his pft went down a percent.... so just wondering if anyone else has had this germ and has had success getting rid...

hi chris! nice to meet you!! i am sooo thankful for finding this site!!! and you are right..lots of support! think i will be a member for life!!!

hi chris! nice to meet you!! i am sooo thankful for finding this site!!! and you are right..lots of support! think i will be a member for life!!!

hi chris! nice to meet you!! i am sooo thankful for finding this site!!! and you are right..lots of support! think i will be a member for life!!!

how long have you been in this clinical trial, Lauren? Does it seem to be helping you? is it oral, inhaled or iv or combo?....always eager to find a new treatment!!!

how long have you been in this clinical trial, Lauren? Does it seem to be helping you? is it oral, inhaled or iv or combo?....always eager to find a new treatment!!!