Bronchiectasis

Z

zoe4life

New member
This hospital stay...6 days ago (still on home iv's), Zoe was diagnosed with Bronchiectasis.<img src="i/expressions/face-icon-small-sad.gif" border="0"> She will be 7 in April. She had a chest ct done while in. The doc went over it with me. It's not a great thing to hear when your 6 yr. old is diagnosed with it. Unfortunately, Zoe is on albuterol, hypertonic, and pulmozyme nebbed. CPT twice a day. Without fail. She has NEVER missed a treatment or CPT. The only thing they added due to this new diagnosis is Zithro MWF, to help with inflammation.
Soooo...do all cf'ers get it...when does it show up??? Who knows. Another gray area with CF. Yay.
 
Z

zoe4life

New member
This hospital stay...6 days ago (still on home iv's), Zoe was diagnosed with Bronchiectasis.<img src="i/expressions/face-icon-small-sad.gif" border="0"> She will be 7 in April. She had a chest ct done while in. The doc went over it with me. It's not a great thing to hear when your 6 yr. old is diagnosed with it. Unfortunately, Zoe is on albuterol, hypertonic, and pulmozyme nebbed. CPT twice a day. Without fail. She has NEVER missed a treatment or CPT. The only thing they added due to this new diagnosis is Zithro MWF, to help with inflammation.
<br />Soooo...do all cf'ers get it...when does it show up??? Who knows. Another gray area with CF. Yay.
 
R

rwatterson

New member
Hi all. I think my boyfriend was just diagnosed with bronchiectasis (I wasn't able to go to the appointment with him, and he's foggy on specific details). The doctor told him he probably has small pockets of infection in his lungs, which is causing him to not get better even after 3 rounds of IVs in the past 8 months and sinus surgery (previously he had not had IVs in 9 years). My questions is: the reason we know he's not getting better even before he starts feeling like crap again is because I can notice a smell, it starts through his nose/mouth first especially after he coughs, then it starts to almost come out of his pores. Has anyone else ever had this problem? It's hard to explain the smell, but the best I can describe it as is smelling like farts. I know this is awful, and it's obviously causing him a lot of social anxiety. Any suggestions?
 
R

rwatterson

New member
Hi all. I think my boyfriend was just diagnosed with bronchiectasis (I wasn't able to go to the appointment with him, and he's foggy on specific details). The doctor told him he probably has small pockets of infection in his lungs, which is causing him to not get better even after 3 rounds of IVs in the past 8 months and sinus surgery (previously he had not had IVs in 9 years). My questions is: the reason we know he's not getting better even before he starts feeling like crap again is because I can notice a smell, it starts through his nose/mouth first especially after he coughs, then it starts to almost come out of his pores. Has anyone else ever had this problem? It's hard to explain the smell, but the best I can describe it as is smelling like farts. I know this is awful, and it's obviously causing him a lot of social anxiety. Any suggestions?
 
R

rwatterson

New member
Hi all. I think my boyfriend was just diagnosed with bronchiectasis (I wasn't able to go to the appointment with him, and he's foggy on specific details). The doctor told him he probably has small pockets of infection in his lungs, which is causing him to not get better even after 3 rounds of IVs in the past 8 months and sinus surgery (previously he had not had IVs in 9 years). My questions is: the reason we know he's not getting better even before he starts feeling like crap again is because I can notice a smell, it starts through his nose/mouth first especially after he coughs, then it starts to almost come out of his pores. Has anyone else ever had this problem? It's hard to explain the smell, but the best I can describe it as is smelling like farts. I know this is awful, and it's obviously causing him a lot of social anxiety. Any suggestions?
 
S

sunflower

New member
hiI was diagnosed with bronchiectasis at the age of 7 I think. AND remember hearing about it from time to time didn't think it was anything to worry about until I WAS dx's with Cystic Fibrosis at the age of 33 yrs old.


Sunflower
-----------
ABPA - Asthma
Psuedomonas resistant
mutations DF508-P67L..

Live life to the full and surround yourself with happy people.
 
S

sunflower

New member
hiI was diagnosed with bronchiectasis at the age of 7 I think. AND remember hearing about it from time to time didn't think it was anything to worry about until I WAS dx's with Cystic Fibrosis at the age of 33 yrs old.


Sunflower
-----------
ABPA - Asthma
Psuedomonas resistant
mutations DF508-P67L..

Live life to the full and surround yourself with happy people.
 
S

sunflower

New member
hiI was diagnosed with bronchiectasis at the age of 7 I think. AND remember hearing about it from time to time didn't think it was anything to worry about until I WAS dx's with Cystic Fibrosis at the age of 33 yrs old.
<br />
<br />
<br />Sunflower
<br />-----------
<br />ABPA - Asthma
<br />Psuedomonas resistant
<br />mutations DF508-P67L..
<br />
<br />Live life to the full and surround yourself with happy people.
 
E

ej0820

New member
Alright, I'm going to be the idiot here.

What is bronchiectasis? I looked it up and I don't understand how it's any different than CF and classic scar tissue build up with chronic infections? Is it just a name for the scar tissue development due to chronic infections? Are there symptoms with it? If there are, how do you differentiate those symptoms from normal CF?

I'm just wondering if I may have it since so many of you have mentioned how common in CF it really is...
 
E

ej0820

New member
Alright, I'm going to be the idiot here.

What is bronchiectasis? I looked it up and I don't understand how it's any different than CF and classic scar tissue build up with chronic infections? Is it just a name for the scar tissue development due to chronic infections? Are there symptoms with it? If there are, how do you differentiate those symptoms from normal CF?

I'm just wondering if I may have it since so many of you have mentioned how common in CF it really is...
 
E

ej0820

New member
Alright, I'm going to be the idiot here.
<br />
<br />What is bronchiectasis? I looked it up and I don't understand how it's any different than CF and classic scar tissue build up with chronic infections? Is it just a name for the scar tissue development due to chronic infections? Are there symptoms with it? If there are, how do you differentiate those symptoms from normal CF?
<br />
<br />I'm just wondering if I may have it since so many of you have mentioned how common in CF it really is...
 
M

Mallymookcf

New member
my doc explained to me that bronchiectasis was basically when the bronchial tubes/air ways, become enlargened on the ends. She said your airways should look like tree branches the further the limbs go out the smaller they should be, but apparently with bronchiectasis they get really large at the ends. she explained there are small holes?cysts that collect with mucus in your airways that after time get infected because they are not being cleared, out and this causes your airways to enlargen. i have had it since i was 15. it is the part of cf i struggle with the most, along with hemopotysis. i have it in my upper lungs not my lower lungs.
 
M

Mallymookcf

New member
my doc explained to me that bronchiectasis was basically when the bronchial tubes/air ways, become enlargened on the ends. She said your airways should look like tree branches the further the limbs go out the smaller they should be, but apparently with bronchiectasis they get really large at the ends. she explained there are small holes?cysts that collect with mucus in your airways that after time get infected because they are not being cleared, out and this causes your airways to enlargen. i have had it since i was 15. it is the part of cf i struggle with the most, along with hemopotysis. i have it in my upper lungs not my lower lungs.
 
M

Mallymookcf

New member
my doc explained to me that bronchiectasis was basically when the bronchial tubes/air ways, become enlargened on the ends. She said your airways should look like tree branches the further the limbs go out the smaller they should be, but apparently with bronchiectasis they get really large at the ends. she explained there are small holes?cysts that collect with mucus in your airways that after time get infected because they are not being cleared, out and this causes your airways to enlargen. i have had it since i was 15. it is the part of cf i struggle with the most, along with hemopotysis. i have it in my upper lungs not my lower lungs.
 
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