EXTREMELY low FEV1

[sarabeth87]

Okay, so I have an FEV1 of around 65% and my brother's is about 40%. Our new CF friend we met said his is around 13%. He's on oxygen and is very skinny, but he's still up doing things. We even went 4-wheeler riding today and he didn't wear his O2 the entire time. In fact we hung out about 4 hrs before he finally put it on. Is it possible that he's wrong about what is FEV1 is or is it possible for it to be that low and still be relatively active?

 

[sarabeth87]

Okay, so I have an FEV1 of around 65% and my brother's is about 40%. Our new CF friend we met said his is around 13%. He's on oxygen and is very skinny, but he's still up doing things. We even went 4-wheeler riding today and he didn't wear his O2 the entire time. In fact we hung out about 4 hrs before he finally put it on. Is it possible that he's wrong about what is FEV1 is or is it possible for it to be that low and still be relatively active?

 

[sarabeth87]

Okay, so I have an FEV1 of around 65% and my brother's is about 40%. Our new CF friend we met said his is around 13%. He's on oxygen and is very skinny, but he's still up doing things. We even went 4-wheeler riding today and he didn't wear his O2 the entire time. In fact we hung out about 4 hrs before he finally put it on. Is it possible that he's wrong about what is FEV1 is or is it possible for it to be that low and still be relatively active?

 

[greatbay]

Yes, it is....I run between 14 - 17% FEV1 and also am on 02 24/7...but if I am sitting/standing and not moving too much than I can go off my 02 for quite awhile....I also ride on my husband's 4-wheeler w/o 02...it is lots of body movement or carrying something that is my downfall. So you can be active with a very low FEV1...or at least I can.

 

[greatbay]

Yes, it is....I run between 14 - 17% FEV1 and also am on 02 24/7...but if I am sitting/standing and not moving too much than I can go off my 02 for quite awhile....I also ride on my husband's 4-wheeler w/o 02...it is lots of body movement or carrying something that is my downfall. So you can be active with a very low FEV1...or at least I can.

 

[greatbay]

Yes, it is....I run between 14 - 17% FEV1 and also am on 02 24/7...but if I am sitting/standing and not moving too much than I can go off my 02 for quite awhile....I also ride on my husband's 4-wheeler w/o 02...it is lots of body movement or carrying something that is my downfall. So you can be active with a very low FEV1...or at least I can.

 

[JustDucky]

I think with gradual declines, our bodies find a way to adapt. If he FEV1 dropped rapidly, then he would probably feel it more and be more short of breath. My lowest FEV was in the teens, and I felt it but it was a relatively quick drop to that point as well. Simply walking to the bathroom took everything I had. These days, I run around 35-38%, better than the teens for sure and definitely have my limits. Hills are a nightmare, basically heavy anything is hard. But, if I pace myself, then I do fairly well...I too wear O2 nearly 24/7 and use a vent for nights and eves (that's for a totally different reason, not CF related).
I think your friend has definitely learned to adapt to his low FEV by the sounds of it....not only that, CF'ers are very tough <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hugs, Jenn

 

[JustDucky]

I think with gradual declines, our bodies find a way to adapt. If he FEV1 dropped rapidly, then he would probably feel it more and be more short of breath. My lowest FEV was in the teens, and I felt it but it was a relatively quick drop to that point as well. Simply walking to the bathroom took everything I had. These days, I run around 35-38%, better than the teens for sure and definitely have my limits. Hills are a nightmare, basically heavy anything is hard. But, if I pace myself, then I do fairly well...I too wear O2 nearly 24/7 and use a vent for nights and eves (that's for a totally different reason, not CF related).
I think your friend has definitely learned to adapt to his low FEV by the sounds of it....not only that, CF'ers are very tough <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hugs, Jenn

 

[JustDucky]

I think with gradual declines, our bodies find a way to adapt. If he FEV1 dropped rapidly, then he would probably feel it more and be more short of breath. My lowest FEV was in the teens, and I felt it but it was a relatively quick drop to that point as well. Simply walking to the bathroom took everything I had. These days, I run around 35-38%, better than the teens for sure and definitely have my limits. Hills are a nightmare, basically heavy anything is hard. But, if I pace myself, then I do fairly well...I too wear O2 nearly 24/7 and use a vent for nights and eves (that's for a totally different reason, not CF related).
<br />I think your friend has definitely learned to adapt to his low FEV by the sounds of it....not only that, CF'ers are very tough <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />Hugs, Jenn

 

[mag6125]

Its possible to do just about anything with low FEV if your body is use to it. I had a partial collapsed lung for a week before I went to the ER and my pulse-ox was still 95% at the time. I play softball with FEV around 32-38%, you just adjust.

 

[mag6125]

Its possible to do just about anything with low FEV if your body is use to it. I had a partial collapsed lung for a week before I went to the ER and my pulse-ox was still 95% at the time. I play softball with FEV around 32-38%, you just adjust.

 

[mag6125]

Its possible to do just about anything with low FEV if your body is use to it. I had a partial collapsed lung for a week before I went to the ER and my pulse-ox was still 95% at the time. I play softball with FEV around 32-38%, you just adjust.

 

[momofJames]

My son is 23 and has FEVs 48 to 52. Unless he has a very active infection he handles anything. He is a big adjuster.

 

[momofJames]

My son is 23 and has FEVs 48 to 52. Unless he has a very active infection he handles anything. He is a big adjuster.

 

[momofJames]

My son is 23 and has FEVs 48 to 52. Unless he has a very active infection he handles anything. He is a big adjuster.

 

[debs2girls]

My daughter is 9 and pft's are 47. She does anything she wants to do but sometime it takes her a little bit to catch her breath.

 

[debs2girls]

My daughter is 9 and pft's are 47. She does anything she wants to do but sometime it takes her a little bit to catch her breath.

 

[debs2girls]

My daughter is 9 and pft's are 47. She does anything she wants to do but sometime it takes her a little bit to catch her breath.

 

[stillkicking]

I have low PFT's. I have O2 to use 24/7, but I rarely do. I'm on it at nights, and some days I'm on it most of the day, but I still keep active. My stamina is greatly impacted. I can play hard for a minute and then it takes about 5 to catch my breath again, but I have a great time in that minute or so<img src="i/expressions/face-icon-small-wink.gif" border="0"> I agree with the earlier post, that if it's a gradual decline it's easier for your body to adapt. It's nice to hear other's experiences.

 

[stillkicking]

I have low PFT's. I have O2 to use 24/7, but I rarely do. I'm on it at nights, and some days I'm on it most of the day, but I still keep active. My stamina is greatly impacted. I can play hard for a minute and then it takes about 5 to catch my breath again, but I have a great time in that minute or so<img src="i/expressions/face-icon-small-wink.gif" border="0"> I agree with the earlier post, that if it's a gradual decline it's easier for your body to adapt. It's nice to hear other's experiences.