Surprising results

[musclemania70]

It doesn't really matter what your fev 1 number is if a) you are still gettting infections and it still leads to hospitalization b) you have OTHER symptoms of CF such as hemoptysis, change in mucous color, sleeplessness due to low sats
c) no exercise tolerance I don't care much for the numbers as I see them. I look at other indicators which say 'I am not doing well'. If no you have no other symptoms like a b or c then you are right, number doesn't matter. However, when having an exacerbation of CF a good doctor does not look solely at numbers when admitting a patient.....there are many things to take into account.

 

[musclemania70]

It doesn't really matter what your fev 1 number is if a) you are still gettting infections and it still leads to hospitalization b) you have OTHER symptoms of CF such as hemoptysis, change in mucous color, sleeplessness due to low sats
c) no exercise tolerance I don't care much for the numbers as I see them. I look at other indicators which say 'I am not doing well'. If no you have no other symptoms like a b or c then you are right, number doesn't matter. However, when having an exacerbation of CF a good doctor does not look solely at numbers when admitting a patient.....there are many things to take into account.

 

[Jana]

This is interesting. I was trained early on in good breathing through singing and playing the flute. Until last summer, my PFTs had always been quite high. They were mostly in the 90s for years and then had slowly dropped over the last few years until my FEV1 and FVC were both in the low 80s.

In July, I had severe pain between my left shoulder and neck along with some shortness of breath. My doctors never really could find the cause of the problem but discovered the left side of my diaphragm was slightly elevated. As of the last time it was checked, it has never gone back to normal. The pain went away after a couple of weeks.

My next PFT found the my FEV1 and FVC had both dropped to 60%, and they have stayed there. My pulmonary doctor kept saying he didn't think my diaphragm was elevated enough to cause such a drop, but in the end he could find no other explanation.

Your post makes me wonder--maybe the diaphragm issue just caused me to lose the ability to breathe as effectively as I could in the past. Food for thought anyway. . .

 

[Jana]

This is interesting. I was trained early on in good breathing through singing and playing the flute. Until last summer, my PFTs had always been quite high. They were mostly in the 90s for years and then had slowly dropped over the last few years until my FEV1 and FVC were both in the low 80s.

In July, I had severe pain between my left shoulder and neck along with some shortness of breath. My doctors never really could find the cause of the problem but discovered the left side of my diaphragm was slightly elevated. As of the last time it was checked, it has never gone back to normal. The pain went away after a couple of weeks.

My next PFT found the my FEV1 and FVC had both dropped to 60%, and they have stayed there. My pulmonary doctor kept saying he didn't think my diaphragm was elevated enough to cause such a drop, but in the end he could find no other explanation.

Your post makes me wonder--maybe the diaphragm issue just caused me to lose the ability to breathe as effectively as I could in the past. Food for thought anyway. . .

 

[Melissa75]

Sounds like what your doctor measured is your VO2 max--I think that's what Jenn is thinking of too.
http://en.wikipedia.org/wiki/VO2_max
My interpretation of your results would be that your cardio-vascular system is compensating well for your pulmonary limitations. I'm not sure I would interpret what your dr did: that you aren't effectively using your real capacity. BUT I'm not a dr by a long shot. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I think athletic people with lung disease may all fall into this category--cardio dragging the pulmo system along. For example, despite my lung issues (bronchiectasis, wheezing, air trapping), I have built up the ability to do cardio exercise, and my torso is rippling with muscles because of rock climbing. (I'm not bragging about that--honestly, it looks weird.)
So anyway, at least as of a few yrs ago, my VO2max outpaced my FEV1 in terms of predicted levels for my age and gender. I didn't have as elaborate of testing as you--just treadmill, heartrate, blood pressure and respiratory rate testing at my old gym as part of the membership package.
Best wishes for your breathing training though. I think that's great and beneficial. Please share what you learn!

 

[Melissa75]

Sounds like what your doctor measured is your VO2 max--I think that's what Jenn is thinking of too.
http://en.wikipedia.org/wiki/VO2_max
My interpretation of your results would be that your cardio-vascular system is compensating well for your pulmonary limitations. I'm not sure I would interpret what your dr did: that you aren't effectively using your real capacity. BUT I'm not a dr by a long shot. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I think athletic people with lung disease may all fall into this category--cardio dragging the pulmo system along. For example, despite my lung issues (bronchiectasis, wheezing, air trapping), I have built up the ability to do cardio exercise, and my torso is rippling with muscles because of rock climbing. (I'm not bragging about that--honestly, it looks weird.)
So anyway, at least as of a few yrs ago, my VO2max outpaced my FEV1 in terms of predicted levels for my age and gender. I didn't have as elaborate of testing as you--just treadmill, heartrate, blood pressure and respiratory rate testing at my old gym as part of the membership package.
Best wishes for your breathing training though. I think that's great and beneficial. Please share what you learn!

 

[hmw]

Emily needed some therapy to help her with learning to breathe with her diaphragm vs up in her chest. Her problems are nothing like what some of you are describing here, but she is only 10 years old. It was not complicated at all (she is developmentally disabled with cognitive level of a 6yr old so cannot comprehend really complex instructions) but rather focused on breath control and being aware of how the process of breathing 'worked.'

She did breathing exercises while laying down on her belly (where she could feel the pressure of her diaphragm against the mat as it expanded to become more aware of it) and on her back, as well as standing, learned how better to position herself to open up the torso (hunching in in response to chest pain and coughing is very common but totally counterproductive to maximizing lung capacity). The exercises taught her to be more aware of taking in deep enough breaths utilizing the diaphragm and pushing the air out from down low and then up through the lungs- and keeping shoulders relaxed to keep her from using the upper chest for all the effort. Putting your hand on your diaphragm is a way to help you be more aware of using it and to control the pace and depth of your breathing.

Now, if you have real, significant weakness this isn't going to work miracles for you but it can help be a first step by making you aware of how you are breathing in the first place and help you breathe more efficiently. She also helped Emily be more aware of her speech, to be speaking on the EXHALE, to waste less breath. What sounded like a lack of fluency in her speech was constant running out of air and very inefficient breathing.

 

[hmw]

Emily needed some therapy to help her with learning to breathe with her diaphragm vs up in her chest. Her problems are nothing like what some of you are describing here, but she is only 10 years old. It was not complicated at all (she is developmentally disabled with cognitive level of a 6yr old so cannot comprehend really complex instructions) but rather focused on breath control and being aware of how the process of breathing 'worked.'

She did breathing exercises while laying down on her belly (where she could feel the pressure of her diaphragm against the mat as it expanded to become more aware of it) and on her back, as well as standing, learned how better to position herself to open up the torso (hunching in in response to chest pain and coughing is very common but totally counterproductive to maximizing lung capacity). The exercises taught her to be more aware of taking in deep enough breaths utilizing the diaphragm and pushing the air out from down low and then up through the lungs- and keeping shoulders relaxed to keep her from using the upper chest for all the effort. Putting your hand on your diaphragm is a way to help you be more aware of using it and to control the pace and depth of your breathing.

Now, if you have real, significant weakness this isn't going to work miracles for you but it can help be a first step by making you aware of how you are breathing in the first place and help you breathe more efficiently. She also helped Emily be more aware of her speech, to be speaking on the EXHALE, to waste less breath. What sounded like a lack of fluency in her speech was constant running out of air and very inefficient breathing.

 

[Anomie]

Danika does that real shallow breathing too and her PFTs are over 100% so I've always wondered if it was just an ineffective breathing pattern. I think it might have to do with the hyper inflation that occurs in the lungs of people with cf. Does anyone know what belly breathing is? Her mom notices her doing it some times but I don't really know what it means.

 

[Anomie]

Danika does that real shallow breathing too and her PFTs are over 100% so I've always wondered if it was just an ineffective breathing pattern. I think it might have to do with the hyper inflation that occurs in the lungs of people with cf. Does anyone know what belly breathing is? Her mom notices her doing it some times but I don't really know what it means.

 

[hmw]

Anomie~ belly breathing in terms of what you WANT to see is breathing using your diaphragm, which is what I was talking about above in my post re the therapy my dd had.

 

[hmw]

Anomie~ belly breathing in terms of what you WANT to see is breathing using your diaphragm, which is what I was talking about above in my post re the therapy my dd had.

 

[cindylou]

This has been really interesting to read! As a kid, my respiratory therapist at clinic was very involved in my clinic visits and always wanted to try new things. For awhile she really wanted me to use the Scandinavian breathing techniques as a method of airway clearance. They never were great for me for airway clearance (plus, I wanted to be able to read while I did therapy!), but I have to say, ever since having her as my therapist, I have always breathed with my diaphragm. After I got married (3.5 years ago) and was suddenly spending a lot more time in very close proximity to another person, I started noticing that my husband breathes noticeably faster than I do and uses his shoulders more. At first I thought maybe something was wrong with him (heh, even though he's perfectly healthy!) until I started watching the way other people breathed... pretty much EVERYONE breathed faster and shallower than I did!

A few weeks ago, I was wearing a cute outfit to church with a decorative belt fastened around my belly button area (as is trendy). I spent the whole day feeling like I couldn't catch my breath. I came home wondering why on earth everyone else in the world was able to wear this cute trend, but it made me feel out of breath. It's not like I am fat, and even when I let the belt be pretty loose, I still felt like it was constricting my breath. It finally occurred to me that I breathe with my diaphragm, and so the belt slung across my belly was inhibiting my stomach movement.

So anyway, realizing all of this over the past few years (and then reading about how uncommon this kind of breathing actually is in CF) has made me really grateful for that early therapist who taught me such good breathing techniques, which have evidently stuck with me throughout my life! <img src="i/expressions/face-icon-small-wink.gif" border="0">

I've also found yoga, meditation, etc. to be helpful in maintaining these. Also, I've noticed that when I get busy or stressed I tend to go for awhile without taking deep enough breaths, and I always get chest pain as a result.

 

[cindylou]

This has been really interesting to read! As a kid, my respiratory therapist at clinic was very involved in my clinic visits and always wanted to try new things. For awhile she really wanted me to use the Scandinavian breathing techniques as a method of airway clearance. They never were great for me for airway clearance (plus, I wanted to be able to read while I did therapy!), but I have to say, ever since having her as my therapist, I have always breathed with my diaphragm. After I got married (3.5 years ago) and was suddenly spending a lot more time in very close proximity to another person, I started noticing that my husband breathes noticeably faster than I do and uses his shoulders more. At first I thought maybe something was wrong with him (heh, even though he's perfectly healthy!) until I started watching the way other people breathed... pretty much EVERYONE breathed faster and shallower than I did!

A few weeks ago, I was wearing a cute outfit to church with a decorative belt fastened around my belly button area (as is trendy). I spent the whole day feeling like I couldn't catch my breath. I came home wondering why on earth everyone else in the world was able to wear this cute trend, but it made me feel out of breath. It's not like I am fat, and even when I let the belt be pretty loose, I still felt like it was constricting my breath. It finally occurred to me that I breathe with my diaphragm, and so the belt slung across my belly was inhibiting my stomach movement.

So anyway, realizing all of this over the past few years (and then reading about how uncommon this kind of breathing actually is in CF) has made me really grateful for that early therapist who taught me such good breathing techniques, which have evidently stuck with me throughout my life! <img src="i/expressions/face-icon-small-wink.gif" border="0">

I've also found yoga, meditation, etc. to be helpful in maintaining these. Also, I've noticed that when I get busy or stressed I tend to go for awhile without taking deep enough breaths, and I always get chest pain as a result.

 

[Melissa75]

Cindy, the same thing happened to me! I tried to wear a belt at my waist over a cardigan like is fashionable now. I felt SOB and had pain after a while too.
In the past, I've had what I think we're small atelectases in my lower lobes at night (I'd wake up with sharp pain and inability to take a deep breath). I wondered if it was because of shallow night breathing. Now, I find I sleep with my arms over my head. I think that has helped.
Also this thread has me remembering how at Nyu Hospital yrs ago, I was taught an airway clearance technique that was 25 gaspy inhalations followed by 5 deep huffs...I may have the details wrong. Did anyone learn that?

 

[Melissa75]

Cindy, the same thing happened to me! I tried to wear a belt at my waist over a cardigan like is fashionable now. I felt SOB and had pain after a while too.
In the past, I've had what I think we're small atelectases in my lower lobes at night (I'd wake up with sharp pain and inability to take a deep breath). I wondered if it was because of shallow night breathing. Now, I find I sleep with my arms over my head. I think that has helped.
Also this thread has me remembering how at Nyu Hospital yrs ago, I was taught an airway clearance technique that was 25 gaspy inhalations followed by 5 deep huffs...I may have the details wrong. Did anyone learn that?

 

[Havoc]

It should be noted that all young children are "belly breathers"

 

[Havoc]

It should be noted that all young children are "belly breathers"

 

[hmw]

Havoc- all children are naturally belly breathers, as in the way they should be breathing? Or that shallow breathing up in their chest? They were trying to teach Emily to breathe where she could feel it down lower (in her 'belly'), NOT up in her upper chest, using her shoulders and neck, etc where it was limiting her lung capacity. It seems to me that children would more commonly gravitate towards the less efficient type of breathing, but I could be wrong on that.

 

[hmw]

Havoc- all children are naturally belly breathers, as in the way they should be breathing? Or that shallow breathing up in their chest? They were trying to teach Emily to breathe where she could feel it down lower (in her 'belly'), NOT up in her upper chest, using her shoulders and neck, etc where it was limiting her lung capacity. It seems to me that children would more commonly gravitate towards the less efficient type of breathing, but I could be wrong on that.