IS THERE ANYONE ELSE?!?!?!?!?!?!?

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Joblazer86

New member
Im just wondering if anyone else is not on oxygen and is below 30% PFT's? I was at 17% last month and i usually hover b/t 17-21%. Ive been this way for a while now at least 2-3 yrs. I have to wear it at night at 2 liters and I just did a pulse oximetry and it was good!I use 4 liters when i workout and i did a pulse oximetry on that recently but i havent got word back on that. The doctor is baffled by me b/c I look like a normal healthy guy and then he gets my PFT's and he's like this isnt right,lol!!!im pretty built for my stature and i keep my weight stable. im trying to gain more by stuffing my face,haha. im 5 4 and weigh 120-125. oh and my resting oxygen level is usually 91-93......i know i need to get that up and im tryin. So is there anyone else like me?
 
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shinkdew

New member
I'm almost there. My PFTs are 30, I've never used oxygen. My resting oxygen level is 96-98, it drops into the high 80s with vigorous excercie. I'm 5-7 and weigh 120, I'm trying to gain another 10-15 pounds. My doctors aren't baffled, but I am, I look relatively healthy and don't really cough much. I'm supposed to start the process to get on the transplant list sometime in October.

Jim 28 w/cf
 
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anonymous

New member
I'm at 28% and oxygen sat of 94 or better and I'm not on oxygen.
If I didn't tell anyone that I had CF they wouldn't know it or question it. It's nice to know I'm not alone.
Height: 5'2" Weight 120ish
Not Alone
 
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lovingBenandCambree

New member
Its kind of funny that you ask. I am kind of the opposite. My PFTs can be really good and I still need oxygen. I have actually been able to be off it now for a few months except I am on it at night constantly and when I exercise. My FEV1 is around 49 and my FVC is 70+ Its odd but who knows. I also noticed you were from Texas so the elevation is probably really low. I am in Utah where it is quite high and it makes a huge difference. When I went to Ohio, New York, and California I didn't need any oxygen and that was when I used it constantly at home. Anyway, good luck!

Emilee
 
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WinAce

New member
Until recently, I never needed oxygen. My PFTs were down to 17% in March (!!) and I still only needed it while asleep. More recently, I'm feeling the lack of breathing more and more obviously, so it's very annoying being tethered to that device on occasion. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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Joblazer86

New member
well thanks for the response guys!!!i knew there was ppl out there who where in the same boat as i am,lol.oh emilee i use to live in new mexico and i actually only needed it when i was exercising and at night. i lived a mile up and my pft's havent changed.it is easier though in lower elevations.take care everyone bye
 
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anonymous

New member
i am glad this post came up. i just recently got put on oxygen for night use and it freaked me out at first, i didnt want to be on it! they did a whole in hospital sleep test while i was admitted for the first few days of the infection, so of course at that time my sats were a lot lower. right now they jump between 94-98 during the day, at rest, without O2, depending on the time of day. My FEV1 dropped to 24 around the beginning of my cleanout and was up at 39 yesterday at my appointment. I hover somewhere in the 30% range usually. My O2 while sleeping dropped to 85 while in the hosptial...hence the oxygen prescription. anyway, i am supposed to start the transplant interview process in october too, Jim. It is all new to me and a little scary.

funny enough, as most of you would probably say, i look and act normal and no one would ever be able to tell i had cf unless they knew, then they might notice i get out of breath a little easier. other than that.....i look normal, and feel relatively normal most of the time, or so i think...
 
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HollyCatheryn

New member
<P>Paul Feld, who writes for CF Roundtable (<A href="http://www.cfroundtable.com">www.cfroundtable.com</A>) received a lung transplant early this year. He was never oxygen dependant prior to his transplant and since he was transplanted, his PFTs must have been 30% or less. </P>
 
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HollyCatheryn

New member
I also thought I'd add that there are two (perhaps more) different capacities of the lungs that can be measured. One is how much air you can take in and expel and with what efficiency. The other is how well your lung absorb the oxygen from that air. I found this out from a study done on Lance Armstrong. One of the reasons he is so unbeatable is that he takes in only slightly more air than his competators, but he absorbs about 20% more oxygen from that air that they do. Interesting!
 
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