CT scan report

[Melissa75]

For what it's worth, I was told I had asthma for decades because of persistent wheezing and crackling noises. Yet, my PFTs were fantastic and I didn't really prove the dx with the pre and post bronchodilator spirometry. (I do prove it with the methacholine challenge where you breathe in an irritant.)
<br />
<br />Bottom line is: I wish I'd known about CPT during those years when I took albuterol in an effort to get the gunk up and pulmicort because they told me I would produce less mucus if I used an inhaled steriod. The inflammation of asthma can manifest as mucus as far as some diagrams and doctors say. Those two drugs surely helped a lot back then, just like symbicort does for me now. But CPT/acapella and vigorous exercise do TONS for me as well. Maybe there is more than one kind of asthma...?

 

[mom2owen]

I don't doubt he may have some asthma but the lung junk and tight chest does not seem typical of asthma. He does not wheeze and does not have "attacks." I know there are lots of manifestations of asthma but we have had to be convinced of this dx for years because he does not show signs of that, he shows signs of congestion. And, inhalers do not have the same immediate impact as they seem to with classic asthma. In fact, they do help clear him out, which is great, but they don't make him feel better. What confuses me as well is that Mayo says atelectasis can be caused by "severe asthma" which we have never seen in Owen.
I am waiting to hear back from our asthma specialist. Regardless of why he has it, I am wondering what else we could be doing to help. I might have already said this but he is on oral prednisone, albuterol nebs every 4 hours and symbicort 160, two puffs twice a day but so far, there has been no improvement in the cough. (another weird sign is his petechiae, might be spelling that wrong, where he gets broken blood vessels in his chest from coughing hard or labored breathing. yikes.)
Thanks for all the thoughts, I have heard so many stories where people get diagnosed with asthma before the CF diagnosis comes. I would love learn vicariously through others and be ahead of that curve and I am anxious to get him on the right program so we can reverse the damage and prevent more. Such unnerving, thanks for being there for me!

 

[mom2owen]

I don't doubt he may have some asthma but the lung junk and tight chest does not seem typical of asthma. He does not wheeze and does not have "attacks." I know there are lots of manifestations of asthma but we have had to be convinced of this dx for years because he does not show signs of that, he shows signs of congestion. And, inhalers do not have the same immediate impact as they seem to with classic asthma. In fact, they do help clear him out, which is great, but they don't make him feel better. What confuses me as well is that Mayo says atelectasis can be caused by "severe asthma" which we have never seen in Owen.
I am waiting to hear back from our asthma specialist. Regardless of why he has it, I am wondering what else we could be doing to help. I might have already said this but he is on oral prednisone, albuterol nebs every 4 hours and symbicort 160, two puffs twice a day but so far, there has been no improvement in the cough. (another weird sign is his petechiae, might be spelling that wrong, where he gets broken blood vessels in his chest from coughing hard or labored breathing. yikes.)
Thanks for all the thoughts, I have heard so many stories where people get diagnosed with asthma before the CF diagnosis comes. I would love learn vicariously through others and be ahead of that curve and I am anxious to get him on the right program so we can reverse the damage and prevent more. Such unnerving, thanks for being there for me!

 

[mom2owen]

I don't doubt he may have some asthma but the lung junk and tight chest does not seem typical of asthma. He does not wheeze and does not have "attacks." I know there are lots of manifestations of asthma but we have had to be convinced of this dx for years because he does not show signs of that, he shows signs of congestion. And, inhalers do not have the same immediate impact as they seem to with classic asthma. In fact, they do help clear him out, which is great, but they don't make him feel better. What confuses me as well is that Mayo says atelectasis can be caused by "severe asthma" which we have never seen in Owen.
<br />I am waiting to hear back from our asthma specialist. Regardless of why he has it, I am wondering what else we could be doing to help. I might have already said this but he is on oral prednisone, albuterol nebs every 4 hours and symbicort 160, two puffs twice a day but so far, there has been no improvement in the cough. (another weird sign is his petechiae, might be spelling that wrong, where he gets broken blood vessels in his chest from coughing hard or labored breathing. yikes.)
<br />Thanks for all the thoughts, I have heard so many stories where people get diagnosed with asthma before the CF diagnosis comes. I would love learn vicariously through others and be ahead of that curve and I am anxious to get him on the right program so we can reverse the damage and prevent more. Such unnerving, thanks for being there for me!

 

[mag6125]

Pulmozyme is another neb that is commonly used, unlike Albuterol which opens the airways it helps loosen the mucous to make it easier to cough out during CPT. Normally you would do Albuterol first followed by pulmozyme then CPT. Without a cf diagnosis I don't know if his doc would prescribe pulmozyme but it might be worth asking about. I hope some of the stuff I've shared has been helpful and not confusing. I've been doing this for 22 yrs so feel free to ask me questions and I can share some of my experience. Hope you get some good answers soon!

 

[mag6125]

Pulmozyme is another neb that is commonly used, unlike Albuterol which opens the airways it helps loosen the mucous to make it easier to cough out during CPT. Normally you would do Albuterol first followed by pulmozyme then CPT. Without a cf diagnosis I don't know if his doc would prescribe pulmozyme but it might be worth asking about. I hope some of the stuff I've shared has been helpful and not confusing. I've been doing this for 22 yrs so feel free to ask me questions and I can share some of my experience. Hope you get some good answers soon!

 

[mag6125]

Pulmozyme is another neb that is commonly used, unlike Albuterol which opens the airways it helps loosen the mucous to make it easier to cough out during CPT. Normally you would do Albuterol first followed by pulmozyme then CPT. Without a cf diagnosis I don't know if his doc would prescribe pulmozyme but it might be worth asking about. I hope some of the stuff I've shared has been helpful and not confusing. I've been doing this for 22 yrs so feel free to ask me questions and I can share some of my experience. Hope you get some good answers soon!

 

[hmw]

<div class="FTQUOTE"><begin quote>I don't doubt he may have some asthma but the lung junk and tight chest does not seem typical of asthma. He does not wheeze and does not have "attacks." I know there are lots of manifestations of asthma but we have had to be convinced of this dx for years because he does not show signs of that, he shows signs of congestion. And, inhalers do not have the same immediate impact as they seem to with classic asthma. In fact, they do help clear him out, which is great, but they don't make him feel better. What confuses me as well is that Mayo says atelectasis can be caused by "severe asthma" which we have never seen in Owen.</end quote></div>

Here is our asthma experience, for what it's worth:

My son (symptomatic cf carrier) and my daughter (cf) both have issues here. My son has a dx of asthma, and my daughter has a pretty severe inflammation/asthma component to her cf, and both present very differently.

Shawn: When we were establishing his asthma action plan, he used a peak flow meter twice daily for a couple months. He very consistently blows the same numbers when he is well (300-330L/min). He has occasional episodes where he can feel some tightening and his numbers are nearly ALWAYS about 270L, and then more rare acute attacks complete with pain, wheezing and severe coughing, and his numbers drop as low as 220L. Using his Ventolin, or when really bad, nebbing albuterol, will bring his numbers up within minutes and provide pretty quick relief. His attacks are acute, consistent, and he feels the relief when we treat them. There is no sputum. He also had improvement in his endurance and attacks were greatly improved when he started daily Singulair.

Emily: She does experience episodes of chest pain/trouble breathing but does not often have the same kind of 'attacks' that Shawn does and I generally only hear wheezing when she is ill, and not even always then. When she is ill she always coughs up junk, and when she coughs during airway clearance when healthy, I can hear junk moving around. She does gain some relief from doing her treatments (we always do her nebs or inhaler and if possible, her vest, if she experiences chest pain or trouble breathing) it's not sudden, drastic improvement as her brother experiences. There is a clear difference between the 2 of them. Hers is a more low-level chronic thing that severely flares when sick, Shawn's is far more acute during attacks but then is largely a non-issue almost all the time.

PFT's/xray:
Shawn's are not good. His fev1 prior to starting daily Singulair was only in the low 70's and small airways in the mid-50's. After a few months on meds, it went up a little bit (fev1 82%, small airways 60%). However, his chest xray was CLEAR. I was told this is more consistent with asthma.
Emily's are very good when she is healthy, drop a lot when she is sick, then rebound. However, her chest xray shows signs of change consistent with cf.

 

[hmw]

<div class="FTQUOTE"><begin quote>I don't doubt he may have some asthma but the lung junk and tight chest does not seem typical of asthma. He does not wheeze and does not have "attacks." I know there are lots of manifestations of asthma but we have had to be convinced of this dx for years because he does not show signs of that, he shows signs of congestion. And, inhalers do not have the same immediate impact as they seem to with classic asthma. In fact, they do help clear him out, which is great, but they don't make him feel better. What confuses me as well is that Mayo says atelectasis can be caused by "severe asthma" which we have never seen in Owen.</end quote>

Here is our asthma experience, for what it's worth:

My son (symptomatic cf carrier) and my daughter (cf) both have issues here. My son has a dx of asthma, and my daughter has a pretty severe inflammation/asthma component to her cf, and both present very differently.

Shawn: When we were establishing his asthma action plan, he used a peak flow meter twice daily for a couple months. He very consistently blows the same numbers when he is well (300-330L/min). He has occasional episodes where he can feel some tightening and his numbers are nearly ALWAYS about 270L, and then more rare acute attacks complete with pain, wheezing and severe coughing, and his numbers drop as low as 220L. Using his Ventolin, or when really bad, nebbing albuterol, will bring his numbers up within minutes and provide pretty quick relief. His attacks are acute, consistent, and he feels the relief when we treat them. There is no sputum. He also had improvement in his endurance and attacks were greatly improved when he started daily Singulair.

Emily: She does experience episodes of chest pain/trouble breathing but does not often have the same kind of 'attacks' that Shawn does and I generally only hear wheezing when she is ill, and not even always then. When she is ill she always coughs up junk, and when she coughs during airway clearance when healthy, I can hear junk moving around. She does gain some relief from doing her treatments (we always do her nebs or inhaler and if possible, her vest, if she experiences chest pain or trouble breathing) it's not sudden, drastic improvement as her brother experiences. There is a clear difference between the 2 of them. Hers is a more low-level chronic thing that severely flares when sick, Shawn's is far more acute during attacks but then is largely a non-issue almost all the time.

PFT's/xray:
Shawn's are not good. His fev1 prior to starting daily Singulair was only in the low 70's and small airways in the mid-50's. After a few months on meds, it went up a little bit (fev1 82%, small airways 60%). However, his chest xray was CLEAR. I was told this is more consistent with asthma.
Emily's are very good when she is healthy, drop a lot when she is sick, then rebound. However, her chest xray shows signs of change consistent with cf.

 

[hmw]

<div class="FTQUOTE"><begin quote>I don't doubt he may have some asthma but the lung junk and tight chest does not seem typical of asthma. He does not wheeze and does not have "attacks." I know there are lots of manifestations of asthma but we have had to be convinced of this dx for years because he does not show signs of that, he shows signs of congestion. And, inhalers do not have the same immediate impact as they seem to with classic asthma. In fact, they do help clear him out, which is great, but they don't make him feel better. What confuses me as well is that Mayo says atelectasis can be caused by "severe asthma" which we have never seen in Owen.</end quote>
<br />
<br />Here is our asthma experience, for what it's worth:
<br />
<br />My son (symptomatic cf carrier) and my daughter (cf) both have issues here. My son has a dx of asthma, and my daughter has a pretty severe inflammation/asthma component to her cf, and both present very differently.
<br />
<br />Shawn: When we were establishing his asthma action plan, he used a peak flow meter twice daily for a couple months. He very consistently blows the same numbers when he is well (300-330L/min). He has occasional episodes where he can feel some tightening and his numbers are nearly ALWAYS about 270L, and then more rare acute attacks complete with pain, wheezing and severe coughing, and his numbers drop as low as 220L. Using his Ventolin, or when really bad, nebbing albuterol, will bring his numbers up within minutes and provide pretty quick relief. His attacks are acute, consistent, and he feels the relief when we treat them. There is no sputum. He also had improvement in his endurance and attacks were greatly improved when he started daily Singulair.
<br />
<br />Emily: She does experience episodes of chest pain/trouble breathing but does not often have the same kind of 'attacks' that Shawn does and I generally only hear wheezing when she is ill, and not even always then. When she is ill she always coughs up junk, and when she coughs during airway clearance when healthy, I can hear junk moving around. She does gain some relief from doing her treatments (we always do her nebs or inhaler and if possible, her vest, if she experiences chest pain or trouble breathing) it's not sudden, drastic improvement as her brother experiences. There is a clear difference between the 2 of them. Hers is a more low-level chronic thing that severely flares when sick, Shawn's is far more acute during attacks but then is largely a non-issue almost all the time.
<br />
<br />PFT's/xray:
<br />Shawn's are not good. His fev1 prior to starting daily Singulair was only in the low 70's and small airways in the mid-50's. After a few months on meds, it went up a little bit (fev1 82%, small airways 60%). However, his chest xray was CLEAR. I was told this is more consistent with asthma.
<br />Emily's are very good when she is healthy, drop a lot when she is sick, then rebound. However, her chest xray shows signs of change consistent with cf.

 

[mom2owen]

<div class="FTQUOTE"><begin quote> I hope some of the stuff I've shared has been helpful and not confusing. </end quote></div>

Yes, you have all been so helpful to me! Thanks a lot!

So here's my theory- I think Owen has the atelactesis from the build of of mucus and that nebs of albuterol help loosen things up but that asthma is not the cause of the damaged airways. I k now severe asthma can cause it too but since we have no clinical or diagnostic evidence of "severe" asthma, I think it is more from the mucus in general.
Harriet, when you said your daughter's x-ray is consistent with CF, what exactly are you seeing? I am just curious since the Mayo website says atelectasis is consistent with CF (and severe asthma). At the same time, it also said it could be scarring not atelectasis so who knows, but both can be from CF. It sounds to me like Owen is much more similar to Emily than to your son. The nebs don't provide an instant fix but they help loosen the junk so he can start coughing it up more.
I am waiting to hear from the asthma doctor, still, since the CF doctor says it is likely Owen doesn't have CF due to his sinuses. I am sort of hoping the two of them talk and get it all straight and then, boy would it be nice if they called ME! I really believe we need to treat Owen with Pulmozyme, or a vest, or whatever might work to get the mucus out, regardless of what they call it.
Thanks so very much for the information, it helps tremendously.

 

[mom2owen]

<div class="FTQUOTE"><begin quote> I hope some of the stuff I've shared has been helpful and not confusing. </end quote>

Yes, you have all been so helpful to me! Thanks a lot!

So here's my theory- I think Owen has the atelactesis from the build of of mucus and that nebs of albuterol help loosen things up but that asthma is not the cause of the damaged airways. I k now severe asthma can cause it too but since we have no clinical or diagnostic evidence of "severe" asthma, I think it is more from the mucus in general.
Harriet, when you said your daughter's x-ray is consistent with CF, what exactly are you seeing? I am just curious since the Mayo website says atelectasis is consistent with CF (and severe asthma). At the same time, it also said it could be scarring not atelectasis so who knows, but both can be from CF. It sounds to me like Owen is much more similar to Emily than to your son. The nebs don't provide an instant fix but they help loosen the junk so he can start coughing it up more.
I am waiting to hear from the asthma doctor, still, since the CF doctor says it is likely Owen doesn't have CF due to his sinuses. I am sort of hoping the two of them talk and get it all straight and then, boy would it be nice if they called ME! I really believe we need to treat Owen with Pulmozyme, or a vest, or whatever might work to get the mucus out, regardless of what they call it.
Thanks so very much for the information, it helps tremendously.

 

[mom2owen]

<div class="FTQUOTE"><begin quote> I hope some of the stuff I've shared has been helpful and not confusing. </end quote>
<br />
<br />Yes, you have all been so helpful to me! Thanks a lot!
<br />
<br />So here's my theory- I think Owen has the atelactesis from the build of of mucus and that nebs of albuterol help loosen things up but that asthma is not the cause of the damaged airways. I k now severe asthma can cause it too but since we have no clinical or diagnostic evidence of "severe" asthma, I think it is more from the mucus in general.
<br />Harriet, when you said your daughter's x-ray is consistent with CF, what exactly are you seeing? I am just curious since the Mayo website says atelectasis is consistent with CF (and severe asthma). At the same time, it also said it could be scarring not atelectasis so who knows, but both can be from CF. It sounds to me like Owen is much more similar to Emily than to your son. The nebs don't provide an instant fix but they help loosen the junk so he can start coughing it up more.
<br />I am waiting to hear from the asthma doctor, still, since the CF doctor says it is likely Owen doesn't have CF due to his sinuses. I am sort of hoping the two of them talk and get it all straight and then, boy would it be nice if they called ME! I really believe we need to treat Owen with Pulmozyme, or a vest, or whatever might work to get the mucus out, regardless of what they call it.
<br />Thanks so very much for the information, it helps tremendously.

 

[Melissa75]

I meant to mention in my earlier response that my CT scans almost consistently show atelectasis in the lingula. I was under the impression that it was from mucus plugs. When airflow gets blocked, these collapses happen.
I have had exacerbations cause atelectasis AND atelectasis cause exacerbations--I think. By the latter scenario, I mean I sometimes feel fine from a fever/congestion standpoint, but then a breathing pain will start on one of my sides and within 24 hrs, I do have fever and a change in sputum from clear to green. Some areas must have floppier walls and more mucus collection, so they are vulnerable to atelectasis and bacteria growth.
I have found the acapella and CPT to be invaluable for helping me in that "pain before infection" scenario. But most of my late twenties were spent in ignorance of these treatments while I carted myself to the dr's office for a recurrent walking pneumonia dx.
And most likely as a result of those years, I have mild bronchiectasis in my lingula, lower left and right-middle lobes.
I urge you to stick with your vigorous pursuit of mucus clearance. Best wishes.

 

[Melissa75]

I meant to mention in my earlier response that my CT scans almost consistently show atelectasis in the lingula. I was under the impression that it was from mucus plugs. When airflow gets blocked, these collapses happen.
I have had exacerbations cause atelectasis AND atelectasis cause exacerbations--I think. By the latter scenario, I mean I sometimes feel fine from a fever/congestion standpoint, but then a breathing pain will start on one of my sides and within 24 hrs, I do have fever and a change in sputum from clear to green. Some areas must have floppier walls and more mucus collection, so they are vulnerable to atelectasis and bacteria growth.
I have found the acapella and CPT to be invaluable for helping me in that "pain before infection" scenario. But most of my late twenties were spent in ignorance of these treatments while I carted myself to the dr's office for a recurrent walking pneumonia dx.
And most likely as a result of those years, I have mild bronchiectasis in my lingula, lower left and right-middle lobes.
I urge you to stick with your vigorous pursuit of mucus clearance. Best wishes.

 

[Melissa75]

I meant to mention in my earlier response that my CT scans almost consistently show atelectasis in the lingula. I was under the impression that it was from mucus plugs. When airflow gets blocked, these collapses happen.
<br />I have had exacerbations cause atelectasis AND atelectasis cause exacerbations--I think. By the latter scenario, I mean I sometimes feel fine from a fever/congestion standpoint, but then a breathing pain will start on one of my sides and within 24 hrs, I do have fever and a change in sputum from clear to green. Some areas must have floppier walls and more mucus collection, so they are vulnerable to atelectasis and bacteria growth.
<br />I have found the acapella and CPT to be invaluable for helping me in that "pain before infection" scenario. But most of my late twenties were spent in ignorance of these treatments while I carted myself to the dr's office for a recurrent walking pneumonia dx.
<br />And most likely as a result of those years, I have mild bronchiectasis in my lingula, lower left and right-middle lobes.
<br />I urge you to stick with your vigorous pursuit of mucus clearance. Best wishes.

 

[hmw]

I wish I could tell you more. Emily was inpatient when the dr. told me about her xray and didn't have the report with him- it was part of her full chart in clinic, and I keep meaning to ask about it (and keep forgetting. Subconsciously sort of intending to forget? Perhaps.) She's due for a ct scan this summer, so I hope to find out more then. The dr just told me her xray's findings showed 'no more pneumonia, but changes throughout that are consistent with her cf.' She'd been sick the month before, hence the mention of the pneumonia... so all I really know is whatever the changes aren't something localized. All her scans have been taken at the same hospital (while sick and when well) so he has been able to compare them.

 

[hmw]

I wish I could tell you more. Emily was inpatient when the dr. told me about her xray and didn't have the report with him- it was part of her full chart in clinic, and I keep meaning to ask about it (and keep forgetting. Subconsciously sort of intending to forget? Perhaps.) She's due for a ct scan this summer, so I hope to find out more then. The dr just told me her xray's findings showed 'no more pneumonia, but changes throughout that are consistent with her cf.' She'd been sick the month before, hence the mention of the pneumonia... so all I really know is whatever the changes aren't something localized. All her scans have been taken at the same hospital (while sick and when well) so he has been able to compare them.

 

[hmw]

I wish I could tell you more. Emily was inpatient when the dr. told me about her xray and didn't have the report with him- it was part of her full chart in clinic, and I keep meaning to ask about it (and keep forgetting. Subconsciously sort of intending to forget? Perhaps.) She's due for a ct scan this summer, so I hope to find out more then. The dr just told me her xray's findings showed 'no more pneumonia, but changes throughout that are consistent with her cf.' She'd been sick the month before, hence the mention of the pneumonia... so all I really know is whatever the changes aren't something localized. All her scans have been taken at the same hospital (while sick and when well) so he has been able to compare them.

 

[LouLou]

...likely the changes in Emily's xrays are cloudiness representing congestion and bronchial wall thickening which is later followed by bronchiactisis.