Surprising results

N

nocode

New member
Hi,
I'm 28 and my FEV1 has been 35% for about 10 years. I can do a lot with it (work, lead an active life, etc) but of course am always afraid of it decreasing since it's already so low. (I do get tired a lot obviously).
For this reason, I have always thought I had a 35% lung capacity.
However, I did a very expensive, thorough test recently where they truly tested my lung capacity, heart, breath rate and even muscles and now we found out that my real lung capacity is 67%.
This came as a massive surprise, of course, and went against everything I ever believed. However, here's the downside... I found out I suffer from 'inffective respiratory effect' (which I now know a lot of us suffer from) and I breathe so ineffectively that the doctor says that my real problem is this, and not my lung capacity.
I'm going to start doing a very specific type of physiotherapy to tackle this problem and he hopes I can retrain my breathing and start making use of my real lung capacity.
This sounds like a dream, a window of opportunity that I never knew I could have, but at the same time I can't help being afraid that it won't work and I'll have to be put on night oxygen for the first time to prevent my heart from suffering in the long run. (Everything else was fine by the way, muscles and heart results were perfect).
Has any of you gone through something similar?
Any thoughts will be helpful, since I am kind of confused.
Thanks,
Vera
 
N

nocode

New member
Hi,
I'm 28 and my FEV1 has been 35% for about 10 years. I can do a lot with it (work, lead an active life, etc) but of course am always afraid of it decreasing since it's already so low. (I do get tired a lot obviously).
For this reason, I have always thought I had a 35% lung capacity.
However, I did a very expensive, thorough test recently where they truly tested my lung capacity, heart, breath rate and even muscles and now we found out that my real lung capacity is 67%.
This came as a massive surprise, of course, and went against everything I ever believed. However, here's the downside... I found out I suffer from 'inffective respiratory effect' (which I now know a lot of us suffer from) and I breathe so ineffectively that the doctor says that my real problem is this, and not my lung capacity.
I'm going to start doing a very specific type of physiotherapy to tackle this problem and he hopes I can retrain my breathing and start making use of my real lung capacity.
This sounds like a dream, a window of opportunity that I never knew I could have, but at the same time I can't help being afraid that it won't work and I'll have to be put on night oxygen for the first time to prevent my heart from suffering in the long run. (Everything else was fine by the way, muscles and heart results were perfect).
Has any of you gone through something similar?
Any thoughts will be helpful, since I am kind of confused.
Thanks,
Vera
 
G

giantsfan91

Guest
Sorry, I can't offer any insight because I'm kind of in the same situation as you. My pft's are in the mid 40's but I know those aren't my real numbers. What is the name of the test you had done? I would love to know my real capacity as well.
 
G

giantsfan91

Guest
Sorry, I can't offer any insight because I'm kind of in the same situation as you. My pft's are in the mid 40's but I know those aren't my real numbers. What is the name of the test you had done? I would love to know my real capacity as well.
 
J

JustDucky

New member
Wow....that must have been quite a shocker for you! I have FEV's in the low 30's, sometimes 20's and I know some of that is because I physically cannot blow out with force because of my diaphragm. I have a weak diaphragm due to a myopathy of sorts and that definitely contributes to my low FEV's, I also have lung damage, so between the two issues, my FEV suffers. So I guess you can say that I too have ineffective breathing due to weak muscles. At one point (and this was before my CF dx), my FEV was 10-12% and I had to be vented 24/7 because I could not sustain my sats and my CO2 levels were climbing. I was extremely weak, everywhere with my diaphragm being in the worst shape. Over time, I did get a little stronger, and now only use the vent eves nights as I fatigue very easily with my effort. When I get sick, the vent is 24/7. I guess what I am saying is that you can possibly regain some of that strength and relearn to breathe....I don't breathe the "normal" way, my pulmo says I have compensated for my weak diaphragm but up to a point.

I hope your physio yields great results! Keeping my fingers crossed for you <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn 40 wCF
 
J

JustDucky

New member
Wow....that must have been quite a shocker for you! I have FEV's in the low 30's, sometimes 20's and I know some of that is because I physically cannot blow out with force because of my diaphragm. I have a weak diaphragm due to a myopathy of sorts and that definitely contributes to my low FEV's, I also have lung damage, so between the two issues, my FEV suffers. So I guess you can say that I too have ineffective breathing due to weak muscles. At one point (and this was before my CF dx), my FEV was 10-12% and I had to be vented 24/7 because I could not sustain my sats and my CO2 levels were climbing. I was extremely weak, everywhere with my diaphragm being in the worst shape. Over time, I did get a little stronger, and now only use the vent eves nights as I fatigue very easily with my effort. When I get sick, the vent is 24/7. I guess what I am saying is that you can possibly regain some of that strength and relearn to breathe....I don't breathe the "normal" way, my pulmo says I have compensated for my weak diaphragm but up to a point.

I hope your physio yields great results! Keeping my fingers crossed for you <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn 40 wCF
 
J

jessykt

Guest
I'm curious what types of exercises you'll be doing...maybe there is a youtube demo we can watch??

I've heard most people are ineffective breathers; upper chest breathers and not from the low diaphragm. I know I'm a very shallow breather, and so much so when I sleep that my husband puts his hand on me to make sure I'm not dead because he can't hear me breath or see me move! I don't know how you could correct your breathing while you sleep, but maybe if you're more effective in the daytime your body adjusts and does it at night too (and then maybe you wouldn't need oxygen)?? Curious thoughts...

Good luck!!
 
J

jessykt

Guest
I'm curious what types of exercises you'll be doing...maybe there is a youtube demo we can watch??

I've heard most people are ineffective breathers; upper chest breathers and not from the low diaphragm. I know I'm a very shallow breather, and so much so when I sleep that my husband puts his hand on me to make sure I'm not dead because he can't hear me breath or see me move! I don't know how you could correct your breathing while you sleep, but maybe if you're more effective in the daytime your body adjusts and does it at night too (and then maybe you wouldn't need oxygen)?? Curious thoughts...

Good luck!!
 
W

Watto

New member
What kind of test did you do to see your real FEV?
And what kind of rehabilitation are you doing?
Please we need that feedback.
Thanx
 
W

Watto

New member
What kind of test did you do to see your real FEV?
And what kind of rehabilitation are you doing?
Please we need that feedback.
Thanx
 
N

nocode

New member
I should start a blog on this! Even my mom said I should let people know because there are probably a lot of people in this situation.
My doctor told me they rarely do this test here because it's extremely expensive. I'll seek more information and let you know. I don't actually know the name of the test, or the type of physiotherapy that i'll be doing, but i'll meet the physiotherapist in about 2 weeks to get this process started and will ask all the questions I need.

The test consisted in riding a bicycle (not a gym bike, but an intricate, complex medical one, I was practically laying down) with a mask on my face, connected to a machine that measures my exact breath frequency; I had my chest and back covered with those stickers for the cardiogram and I had a needle through my artery which measured a bunch of other things during the activity.

They say your real lung capacity is measured during activity, and the breathing frequency has to be taken into account for an accurate reading.

My doctor also said that he never thought I suffered from 'ineffective breathing effect' because of all the things that i'm able to do on a daily basis. He mentioned that patients with these results (35% FEV1 + hyperventilation) can't even go grocery shopping or clean the house. Whereas healthy people breathe about 12x minute, I breathe 112).
I asked why can I do such much then? He said it's because I've always thought that I could and I've always pushed myself, thinking I could do everything, and the body got used to it. He also said this is an indicative that I should continue working, and 'pushing myself' (within reason, not in a negative way) because it's clearly working.
 
N

nocode

New member
I should start a blog on this! Even my mom said I should let people know because there are probably a lot of people in this situation.
My doctor told me they rarely do this test here because it's extremely expensive. I'll seek more information and let you know. I don't actually know the name of the test, or the type of physiotherapy that i'll be doing, but i'll meet the physiotherapist in about 2 weeks to get this process started and will ask all the questions I need.

The test consisted in riding a bicycle (not a gym bike, but an intricate, complex medical one, I was practically laying down) with a mask on my face, connected to a machine that measures my exact breath frequency; I had my chest and back covered with those stickers for the cardiogram and I had a needle through my artery which measured a bunch of other things during the activity.

They say your real lung capacity is measured during activity, and the breathing frequency has to be taken into account for an accurate reading.

My doctor also said that he never thought I suffered from 'ineffective breathing effect' because of all the things that i'm able to do on a daily basis. He mentioned that patients with these results (35% FEV1 + hyperventilation) can't even go grocery shopping or clean the house. Whereas healthy people breathe about 12x minute, I breathe 112).
I asked why can I do such much then? He said it's because I've always thought that I could and I've always pushed myself, thinking I could do everything, and the body got used to it. He also said this is an indicative that I should continue working, and 'pushing myself' (within reason, not in a negative way) because it's clearly working.
 
J

JustDucky

New member
I have heard of that kind of testing on athletes....not sure of the name either lol. But I am glad it yielded some info for you....My pulmo said the same thing to me, that I am doing better because my body found a way to compensate, even if it is still inefficient, it was better than it was four years ago. It is also because I refused to give up and pushed myself as well...so frame of mind is important. I breathe with my accessory muscles off of the vent, I don't do diaphragmatic breathing well enough, so I use every other available muscle to pull in air.. and it works to an extent until I have to climb stairs, walk up any type of hill etc, then it gets tricky. I up the O2 to give me more air flow and to keep my sats up....

I have been through pulmonary rehab a few times and it has helped because they do teach you techniques for breathing and you get stronger. Strong muscles are more efficient than weak ones, it will definitely help!

Jenn 40 w/CF
 
J

JustDucky

New member
I have heard of that kind of testing on athletes....not sure of the name either lol. But I am glad it yielded some info for you....My pulmo said the same thing to me, that I am doing better because my body found a way to compensate, even if it is still inefficient, it was better than it was four years ago. It is also because I refused to give up and pushed myself as well...so frame of mind is important. I breathe with my accessory muscles off of the vent, I don't do diaphragmatic breathing well enough, so I use every other available muscle to pull in air.. and it works to an extent until I have to climb stairs, walk up any type of hill etc, then it gets tricky. I up the O2 to give me more air flow and to keep my sats up....

I have been through pulmonary rehab a few times and it has helped because they do teach you techniques for breathing and you get stronger. Strong muscles are more efficient than weak ones, it will definitely help!

Jenn 40 w/CF
 
H

hammerpocket

Guest
I hope you don't take this in a negative way, because I do think this is an interesting result and is a hopeful sign that you can improve your health, but I'm not sure you've made the right comparison. FEV1 was never meant to be a measurement of "lung capacity"; it's only the amount you can blow out in the first second. If you're like most people with CF, you can keep blowing for 10 or more seconds and still not get all the air out. I think a better comparison would be the "forced vital capacity" (FVC) measurement, which can be much higher. My most recent PFT showed an FEV1 of 53%, but an FVC of 80%.
 
H

hammerpocket

Guest
I hope you don't take this in a negative way, because I do think this is an interesting result and is a hopeful sign that you can improve your health, but I'm not sure you've made the right comparison. FEV1 was never meant to be a measurement of "lung capacity"; it's only the amount you can blow out in the first second. If you're like most people with CF, you can keep blowing for 10 or more seconds and still not get all the air out. I think a better comparison would be the "forced vital capacity" (FVC) measurement, which can be much higher. My most recent PFT showed an FEV1 of 53%, but an FVC of 80%.
 
I

Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hammerpocket</b></i> I hope you don't take this in a negative way, because I do think this is an interesting result and is a hopeful sign that you can improve your health, but I'm not sure you've made the right comparison. FEV1 was never meant to be a measurement of "lung capacity"; it's only the amount you can blow out in the first second. If you're like most people with CF, you can keep blowing for 10 or more seconds and still not get all the air out. I think a better comparison would be the "forced vital capacity" (FVC) measurement, which can be much higher. My most recent PFT showed an FEV1 of 53%, but an FVC of 80%.</end quote>

I would tend to agree. FEV1 IMO seems to be used to catch PFT trends in catching infection early. FVC has a lot more to do with quality of life as far as I'm concerned. My FEV1 is only 31% but my FVC is 62%. My FEV1 had been 22-28% for a long time and my FVC was still 59% and I don't need o2 etc... I live a pretty good life quality wise.
 
I

Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hammerpocket</b></i> I hope you don't take this in a negative way, because I do think this is an interesting result and is a hopeful sign that you can improve your health, but I'm not sure you've made the right comparison. FEV1 was never meant to be a measurement of "lung capacity"; it's only the amount you can blow out in the first second. If you're like most people with CF, you can keep blowing for 10 or more seconds and still not get all the air out. I think a better comparison would be the "forced vital capacity" (FVC) measurement, which can be much higher. My most recent PFT showed an FEV1 of 53%, but an FVC of 80%.</end quote>

I would tend to agree. FEV1 IMO seems to be used to catch PFT trends in catching infection early. FVC has a lot more to do with quality of life as far as I'm concerned. My FEV1 is only 31% but my FVC is 62%. My FEV1 had been 22-28% for a long time and my FVC was still 59% and I don't need o2 etc... I live a pretty good life quality wise.
 
J

jamoncita

New member
i haven't had that experience, but i know i'm not breathing effectively. i am a "chest breather" (vs. "belly breather"), which means i am not breathing deeply. i would love to be trained to breath properly! i hope to hear more about your experience <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

jamoncita

New member
i haven't had that experience, but i know i'm not breathing effectively. i am a "chest breather" (vs. "belly breather"), which means i am not breathing deeply. i would love to be trained to breath properly! i hope to hear more about your experience <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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