What do I do?

[NoExcuses]

Ya i think you need a bronch to ensure that the abx he's giving you are treating what's growing in your lungs.

What you cough up for a sputum culture isn't necessarily representative of what's growing in your lungs. You could have an area where bacteria is flourishing but the sputum is too thick to cough up and so the bacteria aren't showing up on your sputum culture.

The other thing I would check out is allergies. Many CFers have undiagnosed allergies which can lead to inflammation in the airways and broncho-constriction which makes it incredibly hard for me to breath. Get a full panel skin test (not an IgE blood test..... those are useless) and proceed from there.

I have a whole blog on how to treat allergies.

Here's an example for you - when I don't take my allergy meds and I sleep over at a place where I don't have dust mite covers on my matress & pillows, my PFT's plummet from 95% to around 75%. And that's all allergies & inflammation. It's a HUGE issue and I blame the CF docs for not being more proactive about diagnosing allergies.

 

[NoExcuses]

Ya i think you need a bronch to ensure that the abx he's giving you are treating what's growing in your lungs.

What you cough up for a sputum culture isn't necessarily representative of what's growing in your lungs. You could have an area where bacteria is flourishing but the sputum is too thick to cough up and so the bacteria aren't showing up on your sputum culture.

The other thing I would check out is allergies. Many CFers have undiagnosed allergies which can lead to inflammation in the airways and broncho-constriction which makes it incredibly hard for me to breath. Get a full panel skin test (not an IgE blood test..... those are useless) and proceed from there.

I have a whole blog on how to treat allergies.

Here's an example for you - when I don't take my allergy meds and I sleep over at a place where I don't have dust mite covers on my matress & pillows, my PFT's plummet from 95% to around 75%. And that's all allergies & inflammation. It's a HUGE issue and I blame the CF docs for not being more proactive about diagnosing allergies.

 

[NoExcuses]

Ya i think you need a bronch to ensure that the abx he's giving you are treating what's growing in your lungs.

What you cough up for a sputum culture isn't necessarily representative of what's growing in your lungs. You could have an area where bacteria is flourishing but the sputum is too thick to cough up and so the bacteria aren't showing up on your sputum culture.

The other thing I would check out is allergies. Many CFers have undiagnosed allergies which can lead to inflammation in the airways and broncho-constriction which makes it incredibly hard for me to breath. Get a full panel skin test (not an IgE blood test..... those are useless) and proceed from there.

I have a whole blog on how to treat allergies.

Here's an example for you - when I don't take my allergy meds and I sleep over at a place where I don't have dust mite covers on my matress & pillows, my PFT's plummet from 95% to around 75%. And that's all allergies & inflammation. It's a HUGE issue and I blame the CF docs for not being more proactive about diagnosing allergies.

 

[NoExcuses]

Ya i think you need a bronch to ensure that the abx he's giving you are treating what's growing in your lungs.

What you cough up for a sputum culture isn't necessarily representative of what's growing in your lungs. You could have an area where bacteria is flourishing but the sputum is too thick to cough up and so the bacteria aren't showing up on your sputum culture.

The other thing I would check out is allergies. Many CFers have undiagnosed allergies which can lead to inflammation in the airways and broncho-constriction which makes it incredibly hard for me to breath. Get a full panel skin test (not an IgE blood test..... those are useless) and proceed from there.

I have a whole blog on how to treat allergies.

Here's an example for you - when I don't take my allergy meds and I sleep over at a place where I don't have dust mite covers on my matress & pillows, my PFT's plummet from 95% to around 75%. And that's all allergies & inflammation. It's a HUGE issue and I blame the CF docs for not being more proactive about diagnosing allergies.

 

[NoExcuses]

Ya i think you need a bronch to ensure that the abx he's giving you are treating what's growing in your lungs.

What you cough up for a sputum culture isn't necessarily representative of what's growing in your lungs. You could have an area where bacteria is flourishing but the sputum is too thick to cough up and so the bacteria aren't showing up on your sputum culture.

The other thing I would check out is allergies. Many CFers have undiagnosed allergies which can lead to inflammation in the airways and broncho-constriction which makes it incredibly hard for me to breath. Get a full panel skin test (not an IgE blood test..... those are useless) and proceed from there.

I have a whole blog on how to treat allergies.

Here's an example for you - when I don't take my allergy meds and I sleep over at a place where I don't have dust mite covers on my matress & pillows, my PFT's plummet from 95% to around 75%. And that's all allergies & inflammation. It's a HUGE issue and I blame the CF docs for not being more proactive about diagnosing allergies.

 

[jfarel]

Amy,

What do you take for your allergies?

As for a bronch, I'm not sure how gung how my doctor would be about doing that on me while I am not well. Especially w/ my low pft's. I would have to go under general anesthesia. My fev1 prior to getting sick was 28 percent.

The allergy thing makes good sense though. Is there a general pill I would take or would I have to get shots? I say it makes sense because when I go to other peoples homes I start to get short of breath right away. When I come back to my place I feel much better. Oddly enough, I never had this problem when I was younger, thats why I didn't think it was allergies.

 

[jfarel]

Amy,

What do you take for your allergies?

As for a bronch, I'm not sure how gung how my doctor would be about doing that on me while I am not well. Especially w/ my low pft's. I would have to go under general anesthesia. My fev1 prior to getting sick was 28 percent.

The allergy thing makes good sense though. Is there a general pill I would take or would I have to get shots? I say it makes sense because when I go to other peoples homes I start to get short of breath right away. When I come back to my place I feel much better. Oddly enough, I never had this problem when I was younger, thats why I didn't think it was allergies.

 

[jfarel]

Amy,

What do you take for your allergies?

As for a bronch, I'm not sure how gung how my doctor would be about doing that on me while I am not well. Especially w/ my low pft's. I would have to go under general anesthesia. My fev1 prior to getting sick was 28 percent.

The allergy thing makes good sense though. Is there a general pill I would take or would I have to get shots? I say it makes sense because when I go to other peoples homes I start to get short of breath right away. When I come back to my place I feel much better. Oddly enough, I never had this problem when I was younger, thats why I didn't think it was allergies.

 

[jfarel]

Amy,

What do you take for your allergies?

As for a bronch, I'm not sure how gung how my doctor would be about doing that on me while I am not well. Especially w/ my low pft's. I would have to go under general anesthesia. My fev1 prior to getting sick was 28 percent.

The allergy thing makes good sense though. Is there a general pill I would take or would I have to get shots? I say it makes sense because when I go to other peoples homes I start to get short of breath right away. When I come back to my place I feel much better. Oddly enough, I never had this problem when I was younger, thats why I didn't think it was allergies.

 

[jfarel]

Amy,

What do you take for your allergies?

As for a bronch, I'm not sure how gung how my doctor would be about doing that on me while I am not well. Especially w/ my low pft's. I would have to go under general anesthesia. My fev1 prior to getting sick was 28 percent.

The allergy thing makes good sense though. Is there a general pill I would take or would I have to get shots? I say it makes sense because when I go to other peoples homes I start to get short of breath right away. When I come back to my place I feel much better. Oddly enough, I never had this problem when I was younger, thats why I didn't think it was allergies.

 

[bittyhorse23]

It does sound like it may be allergies. I would definitely get testing done. Or like Stacey maybe there is an asthma component to your CF now?

Also is 28% your base line FEV1? If so, that combined with your O2 stats being 87-91 on room air, I would say you need to be on O2, IMO.

I still get really SOB and I just finished another round of IVs about 2 1/2 weeks ago. Just very tight and this is also new for me since I never used to get SOB unless I ran. And I used to bounce back so well, I never even knew I had been sick. Now it lingers.

Sorry I couldn't help more. Hopefully the Drs figure something out soon so you can start to feel better!

 

[bittyhorse23]

It does sound like it may be allergies. I would definitely get testing done. Or like Stacey maybe there is an asthma component to your CF now?

Also is 28% your base line FEV1? If so, that combined with your O2 stats being 87-91 on room air, I would say you need to be on O2, IMO.

I still get really SOB and I just finished another round of IVs about 2 1/2 weeks ago. Just very tight and this is also new for me since I never used to get SOB unless I ran. And I used to bounce back so well, I never even knew I had been sick. Now it lingers.

Sorry I couldn't help more. Hopefully the Drs figure something out soon so you can start to feel better!

 

[bittyhorse23]

It does sound like it may be allergies. I would definitely get testing done. Or like Stacey maybe there is an asthma component to your CF now?

Also is 28% your base line FEV1? If so, that combined with your O2 stats being 87-91 on room air, I would say you need to be on O2, IMO.

I still get really SOB and I just finished another round of IVs about 2 1/2 weeks ago. Just very tight and this is also new for me since I never used to get SOB unless I ran. And I used to bounce back so well, I never even knew I had been sick. Now it lingers.

Sorry I couldn't help more. Hopefully the Drs figure something out soon so you can start to feel better!

 

[bittyhorse23]

It does sound like it may be allergies. I would definitely get testing done. Or like Stacey maybe there is an asthma component to your CF now?

Also is 28% your base line FEV1? If so, that combined with your O2 stats being 87-91 on room air, I would say you need to be on O2, IMO.

I still get really SOB and I just finished another round of IVs about 2 1/2 weeks ago. Just very tight and this is also new for me since I never used to get SOB unless I ran. And I used to bounce back so well, I never even knew I had been sick. Now it lingers.

Sorry I couldn't help more. Hopefully the Drs figure something out soon so you can start to feel better!

 

[bittyhorse23]

It does sound like it may be allergies. I would definitely get testing done. Or like Stacey maybe there is an asthma component to your CF now?

Also is 28% your base line FEV1? If so, that combined with your O2 stats being 87-91 on room air, I would say you need to be on O2, IMO.

I still get really SOB and I just finished another round of IVs about 2 1/2 weeks ago. Just very tight and this is also new for me since I never used to get SOB unless I ran. And I used to bounce back so well, I never even knew I had been sick. Now it lingers.

Sorry I couldn't help more. Hopefully the Drs figure something out soon so you can start to feel better!

 

[vinsmom]

Where do you live? Reason I ask is that my son had IV therapy for 3 weeks and his PFT's continued to fall. They tested him for Valley Fever and he came back positive. We're on a new therapy and he's looking better but I haven't had new PFTs run yet. We live in AZ so the desert dust got him somehow.

 

[vinsmom]

Where do you live? Reason I ask is that my son had IV therapy for 3 weeks and his PFT's continued to fall. They tested him for Valley Fever and he came back positive. We're on a new therapy and he's looking better but I haven't had new PFTs run yet. We live in AZ so the desert dust got him somehow.

 

[vinsmom]

Where do you live? Reason I ask is that my son had IV therapy for 3 weeks and his PFT's continued to fall. They tested him for Valley Fever and he came back positive. We're on a new therapy and he's looking better but I haven't had new PFTs run yet. We live in AZ so the desert dust got him somehow.

 

[vinsmom]

Where do you live? Reason I ask is that my son had IV therapy for 3 weeks and his PFT's continued to fall. They tested him for Valley Fever and he came back positive. We're on a new therapy and he's looking better but I haven't had new PFTs run yet. We live in AZ so the desert dust got him somehow.

 

[vinsmom]

Where do you live? Reason I ask is that my son had IV therapy for 3 weeks and his PFT's continued to fall. They tested him for Valley Fever and he came back positive. We're on a new therapy and he's looking better but I haven't had new PFTs run yet. We live in AZ so the desert dust got him somehow.