Oxygen questions

ladybug · May 17, 2009

Hello,

So, with my increased need for O2 lately, it got me thinking of some questions. For those one home O2 therapy, please share:

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?

7. What other info can you give on your experience with O2 sats and O2 therapy?

I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. I wore my O2 last night at 1 Liter to sleep and slept amazing. My HR was 75 when I woke and my sats were 99. Beautiful. When I'm not on O2 (day or night lately), my HR is 110 and sats between 92-95%. Urgh.

Thanks everyone.

ladybug · May 17, 2009

Hello,

So, with my increased need for O2 lately, it got me thinking of some questions. For those one home O2 therapy, please share:

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?

7. What other info can you give on your experience with O2 sats and O2 therapy?

I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. I wore my O2 last night at 1 Liter to sleep and slept amazing. My HR was 75 when I woke and my sats were 99. Beautiful. When I'm not on O2 (day or night lately), my HR is 110 and sats between 92-95%. Urgh.

Thanks everyone.

ladybug · May 17, 2009

Hello,

So, with my increased need for O2 lately, it got me thinking of some questions. For those one home O2 therapy, please share:

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?

7. What other info can you give on your experience with O2 sats and O2 therapy?

I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. I wore my O2 last night at 1 Liter to sleep and slept amazing. My HR was 75 when I woke and my sats were 99. Beautiful. When I'm not on O2 (day or night lately), my HR is 110 and sats between 92-95%. Urgh.

Thanks everyone.

ladybug · May 17, 2009

Hello,

So, with my increased need for O2 lately, it got me thinking of some questions. For those one home O2 therapy, please share:

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?

7. What other info can you give on your experience with O2 sats and O2 therapy?

I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. I wore my O2 last night at 1 Liter to sleep and slept amazing. My HR was 75 when I woke and my sats were 99. Beautiful. When I'm not on O2 (day or night lately), my HR is 110 and sats between 92-95%. Urgh.

Thanks everyone.

ladybug · May 17, 2009

Hello,
 
 So, with my increased need for O2 lately, it got me thinking of some questions. For those one home O2 therapy, please share:
 
 1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
 
 2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
 
 3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
 
 4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
 
 5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
 
 6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
 
 7. What other info can you give on your experience with O2 sats and O2 therapy?
 
 I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. I wore my O2 last night at 1 Liter to sleep and slept amazing. My HR was 75 when I woke and my sats were 99. Beautiful. When I'm not on O2 (day or night lately), my HR is 110 and sats between 92-95%. Urgh.
 
 Thanks everyone.

Diane · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I first went on O2 last summer when i had pneumonia and pleurisy. My fev1 at that time was around 30% ( i was in the 40's before that)

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
I had 3 embolizations almost back to back (in Jan. and Feb of this year)and once again needed O2 on a constant basis Right now i am beginning to be able to get around without using the O2 but my Dr. told me to always use it during sleep . I also would use it for walking on the treadmill because i would def. need it

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
Yep, we had 7 straight days of rain and mugginess and i was so short of breath and required O2 continuously

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
After i got better from the pneumonia and pleurisy i was able to get off the oxygen completely ( except for sleeping)

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
 I normally carry it with me in the car just in case and of coarse the one time i forgot it, i had a coughing attack and really needed it. Very scary. Try to alwasys carry it with you if you can to avoid the anxiety. Honestly just knowing it is in the car and there if i need it is comforting

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started ? I most likely needed it during exacerbations long before i got it. I am so stubborn and never want to take more steps that will make me feel sicker. But now that i have it i look at it as a way to make things easier on myself.

7. What other info can you give on your experience with O2 sats and O2 therapy? 
My best advice is, if you need it use it. Dont be too proud to wear it in public if you need to. At first i was so uncomfortable wearing it in public when i needed it, but now i am comfortable and if i need it i use it. 

I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. Thanks everyone.

I understand the freaking out because of the need for O2. I did the same thing, I felt like "OH NO" this is such a bad sign and had a very hard time dealing with it and could barely wait till i could get off of it. I am finally at a more accepting stage of the need for it here and there. I remind myself i am 44 and lucky to still be here breathing as well as i do. It may not be perfect and i may require O2 sometimes more than others , but thinking how this disease has taken so many lives so unfairly helps me put it in perspective. I hope it is an acute thing for you and you can get off of it........ but you may want to keep wearing it at night, sounds like you had a great night of sleep<img src="i/expressions/moon.gif" border="0">

Diane · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I first went on O2 last summer when i had pneumonia and pleurisy. My fev1 at that time was around 30% ( i was in the 40's before that)

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
I had 3 embolizations almost back to back (in Jan. and Feb of this year)and once again needed O2 on a constant basis Right now i am beginning to be able to get around without using the O2 but my Dr. told me to always use it during sleep . I also would use it for walking on the treadmill because i would def. need it

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
Yep, we had 7 straight days of rain and mugginess and i was so short of breath and required O2 continuously

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
After i got better from the pneumonia and pleurisy i was able to get off the oxygen completely ( except for sleeping)

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
 I normally carry it with me in the car just in case and of coarse the one time i forgot it, i had a coughing attack and really needed it. Very scary. Try to alwasys carry it with you if you can to avoid the anxiety. Honestly just knowing it is in the car and there if i need it is comforting

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started ? I most likely needed it during exacerbations long before i got it. I am so stubborn and never want to take more steps that will make me feel sicker. But now that i have it i look at it as a way to make things easier on myself.

7. What other info can you give on your experience with O2 sats and O2 therapy? 
My best advice is, if you need it use it. Dont be too proud to wear it in public if you need to. At first i was so uncomfortable wearing it in public when i needed it, but now i am comfortable and if i need it i use it. 

I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. Thanks everyone.

I understand the freaking out because of the need for O2. I did the same thing, I felt like "OH NO" this is such a bad sign and had a very hard time dealing with it and could barely wait till i could get off of it. I am finally at a more accepting stage of the need for it here and there. I remind myself i am 44 and lucky to still be here breathing as well as i do. It may not be perfect and i may require O2 sometimes more than others , but thinking how this disease has taken so many lives so unfairly helps me put it in perspective. I hope it is an acute thing for you and you can get off of it........ but you may want to keep wearing it at night, sounds like you had a great night of sleep<img src="i/expressions/moon.gif" border="0">

Diane · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I first went on O2 last summer when i had pneumonia and pleurisy. My fev1 at that time was around 30% ( i was in the 40's before that)

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
I had 3 embolizations almost back to back (in Jan. and Feb of this year)and once again needed O2 on a constant basis Right now i am beginning to be able to get around without using the O2 but my Dr. told me to always use it during sleep . I also would use it for walking on the treadmill because i would def. need it

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
Yep, we had 7 straight days of rain and mugginess and i was so short of breath and required O2 continuously

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
After i got better from the pneumonia and pleurisy i was able to get off the oxygen completely ( except for sleeping)

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
 I normally carry it with me in the car just in case and of coarse the one time i forgot it, i had a coughing attack and really needed it. Very scary. Try to alwasys carry it with you if you can to avoid the anxiety. Honestly just knowing it is in the car and there if i need it is comforting

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started ? I most likely needed it during exacerbations long before i got it. I am so stubborn and never want to take more steps that will make me feel sicker. But now that i have it i look at it as a way to make things easier on myself.

7. What other info can you give on your experience with O2 sats and O2 therapy? 
My best advice is, if you need it use it. Dont be too proud to wear it in public if you need to. At first i was so uncomfortable wearing it in public when i needed it, but now i am comfortable and if i need it i use it. 

I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. Thanks everyone.

I understand the freaking out because of the need for O2. I did the same thing, I felt like "OH NO" this is such a bad sign and had a very hard time dealing with it and could barely wait till i could get off of it. I am finally at a more accepting stage of the need for it here and there. I remind myself i am 44 and lucky to still be here breathing as well as i do. It may not be perfect and i may require O2 sometimes more than others , but thinking how this disease has taken so many lives so unfairly helps me put it in perspective. I hope it is an acute thing for you and you can get off of it........ but you may want to keep wearing it at night, sounds like you had a great night of sleep<img src="i/expressions/moon.gif" border="0">

Diane · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I first went on O2 last summer when i had pneumonia and pleurisy. My fev1 at that time was around 30% ( i was in the 40's before that)

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
I had 3 embolizations almost back to back (in Jan. and Feb of this year)and once again needed O2 on a constant basis Right now i am beginning to be able to get around without using the O2 but my Dr. told me to always use it during sleep . I also would use it for walking on the treadmill because i would def. need it

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
Yep, we had 7 straight days of rain and mugginess and i was so short of breath and required O2 continuously

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
After i got better from the pneumonia and pleurisy i was able to get off the oxygen completely ( except for sleeping)

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
 I normally carry it with me in the car just in case and of coarse the one time i forgot it, i had a coughing attack and really needed it. Very scary. Try to alwasys carry it with you if you can to avoid the anxiety. Honestly just knowing it is in the car and there if i need it is comforting

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started ? I most likely needed it during exacerbations long before i got it. I am so stubborn and never want to take more steps that will make me feel sicker. But now that i have it i look at it as a way to make things easier on myself.

7. What other info can you give on your experience with O2 sats and O2 therapy? 
My best advice is, if you need it use it. Dont be too proud to wear it in public if you need to. At first i was so uncomfortable wearing it in public when i needed it, but now i am comfortable and if i need it i use it. 

I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. Thanks everyone.

I understand the freaking out because of the need for O2. I did the same thing, I felt like "OH NO" this is such a bad sign and had a very hard time dealing with it and could barely wait till i could get off of it. I am finally at a more accepting stage of the need for it here and there. I remind myself i am 44 and lucky to still be here breathing as well as i do. It may not be perfect and i may require O2 sometimes more than others , but thinking how this disease has taken so many lives so unfairly helps me put it in perspective. I hope it is an acute thing for you and you can get off of it........ but you may want to keep wearing it at night, sounds like you had a great night of sleep<img src="i/expressions/moon.gif" border="0">

Diane · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
 I first went on O2 last summer when i had pneumonia and pleurisy. My fev1 at that time was around 30% ( i was in the 40's before that)
 
 
 2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
 I had 3 embolizations almost back to back (in Jan. and Feb of this year)and once again needed O2 on a constant basis Right now i am beginning to be able to get around without using the O2 but my Dr. told me to always use it during sleep . I also would use it for walking on the treadmill because i would def. need it
 
 3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
 Yep, we had 7 straight days of rain and mugginess and i was so short of breath and required O2 continuously
 
 4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
 After i got better from the pneumonia and pleurisy i was able to get off the oxygen completely ( except for sleeping)
 
 
 5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
 I normally carry it with me in the car just in case and of coarse the one time i forgot it, i had a coughing attack and really needed it. Very scary. Try to alwasys carry it with you if you can to avoid the anxiety. Honestly just knowing it is in the car and there if i need it is comforting
 
 
 
 6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started ? I most likely needed it during exacerbations long before i got it. I am so stubborn and never want to take more steps that will make me feel sicker. But now that i have it i look at it as a way to make things easier on myself.
 
 
 
 7. What other info can you give on your experience with O2 sats and O2 therapy? 
 My best advice is, if you need it use it. Dont be too proud to wear it in public if you need to. At first i was so uncomfortable wearing it in public when i needed it, but now i am comfortable and if i need it i use it. 
 
 
 
 I'm really freaking myself out with needing O2 lately and feeling like I'm getting so much worse (even though if it weren't for the O2 sat drops, I feel essentially ok). I mostly am looking for others' experiences with this so I know I'm not alone and maybe not getting "worse", but this is just an acute thing. Thanks everyone.
 
 I understand the freaking out because of the need for O2. I did the same thing, I felt like "OH NO" this is such a bad sign and had a very hard time dealing with it and could barely wait till i could get off of it. I am finally at a more accepting stage of the need for it here and there. I remind myself i am 44 and lucky to still be here breathing as well as i do. It may not be perfect and i may require O2 sometimes more than others , but thinking how this disease has taken so many lives so unfairly helps me put it in perspective. I hope it is an acute thing for you and you can get off of it........ but you may want to keep wearing it at night, sounds like you had a great night of sleep<img src="i/expressions/moon.gif" border="0">

NYCLawGirl · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I have an FEV1 in the 30s, but I don't *necessarily* think there's a huge correlation. I know people with lower FEV1s and higher O2 sats, and vise-versa.

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
Exercise and sleep are definites - I sometimes need it at rest, particularly when ill. My O2 sats hover in the upper 80s, low 90s.

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
Definitely during exacerbations. Otherwise it varies.

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
Sure. My last exacerbation it took four days to get me above 90%, and that was on several liters of O2. But now I am often around 92/93 during the day w/o the O2.

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
Nope. I talked to my doctor and she said that at my age, walking around with sats in the upper 80s isn't dangerous and I don't need to rush home even if they drop into that level. She would prefer I use it when it's convenient for me and my sats are on the lower side, but honestly I keep an eye on my HR to make sure it doesn't go too high but am otherwise pretty relaxed about the O2. If it goes below the upper 80s I tend to go home and put on the O2.

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
For a few years at night. But only more recently with exercise or during the day. It has correlated with a decline, but not really a decline in lung function so much as the fact that I get more frequent exacerbations.

7. What other info can you give on your experience with O2 sats and O2 therapy?
O2 sats are very important, particularly b/c low O2 can damage your heart. That said, I think I made O2 into a MUCH bigger deal at first than it actually is. For CFers in their 20s and early 30s who are and have been relatively active (compliant with exercise, maintaining active daily life, etc), chances are your heart is fairly strong already. And going on O2 doesn't signify the end of the world, or a huge losing battle to CF. It just means your body needs a little extra help, like reading glasses or anything else. I think my advice (and of course this is just my experience) would be to relax and try as hard as you can to take this in stride: definitely use the O2 when your sats are low or you are SOB, but don't be afraid to keep living. And definitely don't let it get you down about your CF progression -- this is one more step in the journey, not a huge fork in the road!

On a personal note, I take my portable concentrator into my law firm office and use it as needed. No one, not a single lawyer, or a secretary, or anyone else, has so much as looked at me funny as I walk along with it. And sure, I prefer NOT to wear it at work, but I do the best I can when that's just not an option. My biggest complaint is that a cute business outfit and makeup/hair just don't look the same with a nasal canula. Ah, the joys of CF <img src="i/expressions/face-icon-small-wink.gif" border="0">

Good luck.

NYCLawGirl · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I have an FEV1 in the 30s, but I don't *necessarily* think there's a huge correlation. I know people with lower FEV1s and higher O2 sats, and vise-versa.

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
Exercise and sleep are definites - I sometimes need it at rest, particularly when ill. My O2 sats hover in the upper 80s, low 90s.

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
Definitely during exacerbations. Otherwise it varies.

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
Sure. My last exacerbation it took four days to get me above 90%, and that was on several liters of O2. But now I am often around 92/93 during the day w/o the O2.

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
Nope. I talked to my doctor and she said that at my age, walking around with sats in the upper 80s isn't dangerous and I don't need to rush home even if they drop into that level. She would prefer I use it when it's convenient for me and my sats are on the lower side, but honestly I keep an eye on my HR to make sure it doesn't go too high but am otherwise pretty relaxed about the O2. If it goes below the upper 80s I tend to go home and put on the O2.

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
For a few years at night. But only more recently with exercise or during the day. It has correlated with a decline, but not really a decline in lung function so much as the fact that I get more frequent exacerbations.

7. What other info can you give on your experience with O2 sats and O2 therapy?
O2 sats are very important, particularly b/c low O2 can damage your heart. That said, I think I made O2 into a MUCH bigger deal at first than it actually is. For CFers in their 20s and early 30s who are and have been relatively active (compliant with exercise, maintaining active daily life, etc), chances are your heart is fairly strong already. And going on O2 doesn't signify the end of the world, or a huge losing battle to CF. It just means your body needs a little extra help, like reading glasses or anything else. I think my advice (and of course this is just my experience) would be to relax and try as hard as you can to take this in stride: definitely use the O2 when your sats are low or you are SOB, but don't be afraid to keep living. And definitely don't let it get you down about your CF progression -- this is one more step in the journey, not a huge fork in the road!

On a personal note, I take my portable concentrator into my law firm office and use it as needed. No one, not a single lawyer, or a secretary, or anyone else, has so much as looked at me funny as I walk along with it. And sure, I prefer NOT to wear it at work, but I do the best I can when that's just not an option. My biggest complaint is that a cute business outfit and makeup/hair just don't look the same with a nasal canula. Ah, the joys of CF <img src="i/expressions/face-icon-small-wink.gif" border="0">

Good luck.

NYCLawGirl · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I have an FEV1 in the 30s, but I don't *necessarily* think there's a huge correlation. I know people with lower FEV1s and higher O2 sats, and vise-versa.

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
Exercise and sleep are definites - I sometimes need it at rest, particularly when ill. My O2 sats hover in the upper 80s, low 90s.

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
Definitely during exacerbations. Otherwise it varies.

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
Sure. My last exacerbation it took four days to get me above 90%, and that was on several liters of O2. But now I am often around 92/93 during the day w/o the O2.

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
Nope. I talked to my doctor and she said that at my age, walking around with sats in the upper 80s isn't dangerous and I don't need to rush home even if they drop into that level. She would prefer I use it when it's convenient for me and my sats are on the lower side, but honestly I keep an eye on my HR to make sure it doesn't go too high but am otherwise pretty relaxed about the O2. If it goes below the upper 80s I tend to go home and put on the O2.

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
For a few years at night. But only more recently with exercise or during the day. It has correlated with a decline, but not really a decline in lung function so much as the fact that I get more frequent exacerbations.

7. What other info can you give on your experience with O2 sats and O2 therapy?
O2 sats are very important, particularly b/c low O2 can damage your heart. That said, I think I made O2 into a MUCH bigger deal at first than it actually is. For CFers in their 20s and early 30s who are and have been relatively active (compliant with exercise, maintaining active daily life, etc), chances are your heart is fairly strong already. And going on O2 doesn't signify the end of the world, or a huge losing battle to CF. It just means your body needs a little extra help, like reading glasses or anything else. I think my advice (and of course this is just my experience) would be to relax and try as hard as you can to take this in stride: definitely use the O2 when your sats are low or you are SOB, but don't be afraid to keep living. And definitely don't let it get you down about your CF progression -- this is one more step in the journey, not a huge fork in the road!

On a personal note, I take my portable concentrator into my law firm office and use it as needed. No one, not a single lawyer, or a secretary, or anyone else, has so much as looked at me funny as I walk along with it. And sure, I prefer NOT to wear it at work, but I do the best I can when that's just not an option. My biggest complaint is that a cute business outfit and makeup/hair just don't look the same with a nasal canula. Ah, the joys of CF <img src="i/expressions/face-icon-small-wink.gif" border="0">

Good luck.

NYCLawGirl · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I have an FEV1 in the 30s, but I don't *necessarily* think there's a huge correlation. I know people with lower FEV1s and higher O2 sats, and vise-versa.

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
Exercise and sleep are definites - I sometimes need it at rest, particularly when ill. My O2 sats hover in the upper 80s, low 90s.

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
Definitely during exacerbations. Otherwise it varies.

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
Sure. My last exacerbation it took four days to get me above 90%, and that was on several liters of O2. But now I am often around 92/93 during the day w/o the O2.

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
Nope. I talked to my doctor and she said that at my age, walking around with sats in the upper 80s isn't dangerous and I don't need to rush home even if they drop into that level. She would prefer I use it when it's convenient for me and my sats are on the lower side, but honestly I keep an eye on my HR to make sure it doesn't go too high but am otherwise pretty relaxed about the O2. If it goes below the upper 80s I tend to go home and put on the O2.

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
For a few years at night. But only more recently with exercise or during the day. It has correlated with a decline, but not really a decline in lung function so much as the fact that I get more frequent exacerbations.

7. What other info can you give on your experience with O2 sats and O2 therapy?
O2 sats are very important, particularly b/c low O2 can damage your heart. That said, I think I made O2 into a MUCH bigger deal at first than it actually is. For CFers in their 20s and early 30s who are and have been relatively active (compliant with exercise, maintaining active daily life, etc), chances are your heart is fairly strong already. And going on O2 doesn't signify the end of the world, or a huge losing battle to CF. It just means your body needs a little extra help, like reading glasses or anything else. I think my advice (and of course this is just my experience) would be to relax and try as hard as you can to take this in stride: definitely use the O2 when your sats are low or you are SOB, but don't be afraid to keep living. And definitely don't let it get you down about your CF progression -- this is one more step in the journey, not a huge fork in the road!

On a personal note, I take my portable concentrator into my law firm office and use it as needed. No one, not a single lawyer, or a secretary, or anyone else, has so much as looked at me funny as I walk along with it. And sure, I prefer NOT to wear it at work, but I do the best I can when that's just not an option. My biggest complaint is that a cute business outfit and makeup/hair just don't look the same with a nasal canula. Ah, the joys of CF <img src="i/expressions/face-icon-small-wink.gif" border="0">

Good luck.

NYCLawGirl · May 17, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
 I have an FEV1 in the 30s, but I don't *necessarily* think there's a huge correlation. I know people with lower FEV1s and higher O2 sats, and vise-versa.
 
 
 2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
 Exercise and sleep are definites - I sometimes need it at rest, particularly when ill. My O2 sats hover in the upper 80s, low 90s.
 
 3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
 Definitely during exacerbations. Otherwise it varies.
 
 4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
 Sure. My last exacerbation it took four days to get me above 90%, and that was on several liters of O2. But now I am often around 92/93 during the day w/o the O2.
 
 5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
 Nope. I talked to my doctor and she said that at my age, walking around with sats in the upper 80s isn't dangerous and I don't need to rush home even if they drop into that level. She would prefer I use it when it's convenient for me and my sats are on the lower side, but honestly I keep an eye on my HR to make sure it doesn't go too high but am otherwise pretty relaxed about the O2. If it goes below the upper 80s I tend to go home and put on the O2.
 
 6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
 For a few years at night. But only more recently with exercise or during the day. It has correlated with a decline, but not really a decline in lung function so much as the fact that I get more frequent exacerbations.
 
 7. What other info can you give on your experience with O2 sats and O2 therapy?
 O2 sats are very important, particularly b/c low O2 can damage your heart. That said, I think I made O2 into a MUCH bigger deal at first than it actually is. For CFers in their 20s and early 30s who are and have been relatively active (compliant with exercise, maintaining active daily life, etc), chances are your heart is fairly strong already. And going on O2 doesn't signify the end of the world, or a huge losing battle to CF. It just means your body needs a little extra help, like reading glasses or anything else. I think my advice (and of course this is just my experience) would be to relax and try as hard as you can to take this in stride: definitely use the O2 when your sats are low or you are SOB, but don't be afraid to keep living. And definitely don't let it get you down about your CF progression -- this is one more step in the journey, not a huge fork in the road!
 
 On a personal note, I take my portable concentrator into my law firm office and use it as needed. No one, not a single lawyer, or a secretary, or anyone else, has so much as looked at me funny as I walk along with it. And sure, I prefer NOT to wear it at work, but I do the best I can when that's just not an option. My biggest complaint is that a cute business outfit and makeup/hair just don't look the same with a nasal canula. Ah, the joys of CF <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
 Good luck.

Skye · May 18, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I am on 1L of O2 at night. My O2 therapy needs have not changed much. My sats tend to be a bit lower during an exacerbation or with some asthma problems that some of the meds like Tobi seem to cause for me. I tend to keep a very close eye on the asthma component of CF for me. For example, my sats improved noticeably when I started Advair.

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
I use O2 mainly for sleep. My form of exercise is walking and I don't tend to need it for that. I have contemplated trying to do some light jogging and I would need to bring a portable for that; but, I would just do a back pack and be on my way.

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
My needs have not changed too much. I have had some times of being SOB when I start Tobi....but, I have controlled that part of therapy and now don't seem to have any difficulty. I know my limits and I know my boundaries. Rainy or wet days do tend to make things a bit more difficult.

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
I started O2 about 3 years ago when I had pneumonia. I was on it 24/7 for about 3 months and was able to slowly work off of it. I was VERY sick. Once I began to exercise and get into a better care routine; I was able to use it less and less over time. It was a very long process for me and I was new to many things.

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
I have NEVER been anxious about not having enough O2. That is psychology that I have not had to deal with. I can see why that would happen to people. My problem has been more with the pride of wearing it in public. I have though and I used it when I needed to because I wanted to protect my heart and follow doctors orders.

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
I started it because I had pneumonia and was very sick. I was probably needing it at night before that; but, was not aware of the need. My CF is very stable and has been for a couple of years; however, I still need O2 at times.

7. What other info can you give on your experience with O2 sats and O2 therapy?
I understand how you feel about O2. I went through all of the same feelings. I had to finally consider it as just another therapy tool to keep me well and I did things like tie a purple ribbon on my canister or talk to people about the CF Foundation when they were curious about why I needed it. I also played oxygen tag with my daughter to make her feel light and fun about it. Your confidence, and your light-hearted attitude about your occasional need for O2 will go a long way in making the people in your life comfortable and that will make you feel more comfortable. You will also be surprised at what a role model you can be in the community.....this may be the first time ever that CF becomes visible for a while as a part of your life and there are many people who will see a real strength in you.

Skye · May 18, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I am on 1L of O2 at night. My O2 therapy needs have not changed much. My sats tend to be a bit lower during an exacerbation or with some asthma problems that some of the meds like Tobi seem to cause for me. I tend to keep a very close eye on the asthma component of CF for me. For example, my sats improved noticeably when I started Advair.

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
I use O2 mainly for sleep. My form of exercise is walking and I don't tend to need it for that. I have contemplated trying to do some light jogging and I would need to bring a portable for that; but, I would just do a back pack and be on my way.

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
My needs have not changed too much. I have had some times of being SOB when I start Tobi....but, I have controlled that part of therapy and now don't seem to have any difficulty. I know my limits and I know my boundaries. Rainy or wet days do tend to make things a bit more difficult.

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
I started O2 about 3 years ago when I had pneumonia. I was on it 24/7 for about 3 months and was able to slowly work off of it. I was VERY sick. Once I began to exercise and get into a better care routine; I was able to use it less and less over time. It was a very long process for me and I was new to many things.

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
I have NEVER been anxious about not having enough O2. That is psychology that I have not had to deal with. I can see why that would happen to people. My problem has been more with the pride of wearing it in public. I have though and I used it when I needed to because I wanted to protect my heart and follow doctors orders.

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
I started it because I had pneumonia and was very sick. I was probably needing it at night before that; but, was not aware of the need. My CF is very stable and has been for a couple of years; however, I still need O2 at times.

7. What other info can you give on your experience with O2 sats and O2 therapy?
I understand how you feel about O2. I went through all of the same feelings. I had to finally consider it as just another therapy tool to keep me well and I did things like tie a purple ribbon on my canister or talk to people about the CF Foundation when they were curious about why I needed it. I also played oxygen tag with my daughter to make her feel light and fun about it. Your confidence, and your light-hearted attitude about your occasional need for O2 will go a long way in making the people in your life comfortable and that will make you feel more comfortable. You will also be surprised at what a role model you can be in the community.....this may be the first time ever that CF becomes visible for a while as a part of your life and there are many people who will see a real strength in you.

Skye · May 18, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I am on 1L of O2 at night. My O2 therapy needs have not changed much. My sats tend to be a bit lower during an exacerbation or with some asthma problems that some of the meds like Tobi seem to cause for me. I tend to keep a very close eye on the asthma component of CF for me. For example, my sats improved noticeably when I started Advair.

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
I use O2 mainly for sleep. My form of exercise is walking and I don't tend to need it for that. I have contemplated trying to do some light jogging and I would need to bring a portable for that; but, I would just do a back pack and be on my way.

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
My needs have not changed too much. I have had some times of being SOB when I start Tobi....but, I have controlled that part of therapy and now don't seem to have any difficulty. I know my limits and I know my boundaries. Rainy or wet days do tend to make things a bit more difficult.

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
I started O2 about 3 years ago when I had pneumonia. I was on it 24/7 for about 3 months and was able to slowly work off of it. I was VERY sick. Once I began to exercise and get into a better care routine; I was able to use it less and less over time. It was a very long process for me and I was new to many things.

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
I have NEVER been anxious about not having enough O2. That is psychology that I have not had to deal with. I can see why that would happen to people. My problem has been more with the pride of wearing it in public. I have though and I used it when I needed to because I wanted to protect my heart and follow doctors orders.

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
I started it because I had pneumonia and was very sick. I was probably needing it at night before that; but, was not aware of the need. My CF is very stable and has been for a couple of years; however, I still need O2 at times.

7. What other info can you give on your experience with O2 sats and O2 therapy?
I understand how you feel about O2. I went through all of the same feelings. I had to finally consider it as just another therapy tool to keep me well and I did things like tie a purple ribbon on my canister or talk to people about the CF Foundation when they were curious about why I needed it. I also played oxygen tag with my daughter to make her feel light and fun about it. Your confidence, and your light-hearted attitude about your occasional need for O2 will go a long way in making the people in your life comfortable and that will make you feel more comfortable. You will also be surprised at what a role model you can be in the community.....this may be the first time ever that CF becomes visible for a while as a part of your life and there are many people who will see a real strength in you.

Skye · May 18, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
I am on 1L of O2 at night. My O2 therapy needs have not changed much. My sats tend to be a bit lower during an exacerbation or with some asthma problems that some of the meds like Tobi seem to cause for me. I tend to keep a very close eye on the asthma component of CF for me. For example, my sats improved noticeably when I started Advair.

2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
I use O2 mainly for sleep. My form of exercise is walking and I don't tend to need it for that. I have contemplated trying to do some light jogging and I would need to bring a portable for that; but, I would just do a back pack and be on my way.

3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
My needs have not changed too much. I have had some times of being SOB when I start Tobi....but, I have controlled that part of therapy and now don't seem to have any difficulty. I know my limits and I know my boundaries. Rainy or wet days do tend to make things a bit more difficult.

4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
I started O2 about 3 years ago when I had pneumonia. I was on it 24/7 for about 3 months and was able to slowly work off of it. I was VERY sick. Once I began to exercise and get into a better care routine; I was able to use it less and less over time. It was a very long process for me and I was new to many things.

5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
I have NEVER been anxious about not having enough O2. That is psychology that I have not had to deal with. I can see why that would happen to people. My problem has been more with the pride of wearing it in public. I have though and I used it when I needed to because I wanted to protect my heart and follow doctors orders.

6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
I started it because I had pneumonia and was very sick. I was probably needing it at night before that; but, was not aware of the need. My CF is very stable and has been for a couple of years; however, I still need O2 at times.

7. What other info can you give on your experience with O2 sats and O2 therapy?
I understand how you feel about O2. I went through all of the same feelings. I had to finally consider it as just another therapy tool to keep me well and I did things like tie a purple ribbon on my canister or talk to people about the CF Foundation when they were curious about why I needed it. I also played oxygen tag with my daughter to make her feel light and fun about it. Your confidence, and your light-hearted attitude about your occasional need for O2 will go a long way in making the people in your life comfortable and that will make you feel more comfortable. You will also be surprised at what a role model you can be in the community.....this may be the first time ever that CF becomes visible for a while as a part of your life and there are many people who will see a real strength in you.

Skye · May 18, 2009

1. Are you on O2? If so, what is your FEV1? Does your FEV1 seem to change when your O2 therapy needs (i.e. O2 sats) change?
 I am on 1L of O2 at night. My O2 therapy needs have not changed much. My sats tend to be a bit lower during an exacerbation or with some asthma problems that some of the meds like Tobi seem to cause for me. I tend to keep a very close eye on the asthma component of CF for me. For example, my sats improved noticeably when I started Advair.
 
 2. If on O2 therapy, when do you need to use it? Constant? Exercise? Sleep? etc.?
 I use O2 mainly for sleep. My form of exercise is walking and I don't tend to need it for that. I have contemplated trying to do some light jogging and I would need to bring a portable for that; but, I would just do a back pack and be on my way.
 
 3. Do you notice times when you need O2 therapy more? i.e. when have a cold, exacerbation, "pollution" days, allergies, dehydrated, tired, etc.?
 My needs have not changed too much. I have had some times of being SOB when I start Tobi....but, I have controlled that part of therapy and now don't seem to have any difficulty. I know my limits and I know my boundaries. Rainy or wet days do tend to make things a bit more difficult.
 
 4. If you use it for a period of time (i.e. exacerbation, allergies, etc.), do you find you can go back to not using it once the underlying cause is remedied?
 I started O2 about 3 years ago when I had pneumonia. I was on it 24/7 for about 3 months and was able to slowly work off of it. I was VERY sick. Once I began to exercise and get into a better care routine; I was able to use it less and less over time. It was a very long process for me and I was new to many things.
 
 
 5. Do you find, even if your O2 sats are normal, that when out in public you're nervous that you'll need it and not have it causing panic and anxiety?
 I have NEVER been anxious about not having enough O2. That is psychology that I have not had to deal with. I can see why that would happen to people. My problem has been more with the pride of wearing it in public. I have though and I used it when I needed to because I wanted to protect my heart and follow doctors orders.
 
 6. How long have you been on O2 therapy at home? Have you found you started needing it only when your CF worsened or was your CF fairly stable when you started needing it and hasn't changed much?
 I started it because I had pneumonia and was very sick. I was probably needing it at night before that; but, was not aware of the need. My CF is very stable and has been for a couple of years; however, I still need O2 at times.
 
 7. What other info can you give on your experience with O2 sats and O2 therapy?
 I understand how you feel about O2. I went through all of the same feelings. I had to finally consider it as just another therapy tool to keep me well and I did things like tie a purple ribbon on my canister or talk to people about the CF Foundation when they were curious about why I needed it. I also played oxygen tag with my daughter to make her feel light and fun about it. Your confidence, and your light-hearted attitude about your occasional need for O2 will go a long way in making the people in your life comfortable and that will make you feel more comfortable. You will also be surprised at what a role model you can be in the community.....this may be the first time ever that CF becomes visible for a while as a part of your life and there are many people who will see a real strength in you.

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