O2 sats

muchlove

New member
I use O2 full time at the moment. My insurance refused to pay until I was at a consistent 85% or below. I feel it should be covered sooner as this caused a lot of trouble. My energy level is consistently higher for the most part. Before the oxygen I couldnt make it up a hefty flight of stairs and I find I can challenge myself a bit now to get moving and have some minmal exercise. When I started just at night I hated it at first but loved the difference it made. My only complaint is it dries out my nose and gives me nose bleeds that worsen as the concentration raises. As for flights I have no idea. I will be taking my first flight since oxygen next month and have been clueless as to how I can recieve permission for oxygen during the flight. Oxygen can never hurt and you may appreciate the difference it makes. Good luck!
 

muchlove

New member
I use O2 full time at the moment. My insurance refused to pay until I was at a consistent 85% or below. I feel it should be covered sooner as this caused a lot of trouble. My energy level is consistently higher for the most part. Before the oxygen I couldnt make it up a hefty flight of stairs and I find I can challenge myself a bit now to get moving and have some minmal exercise. When I started just at night I hated it at first but loved the difference it made. My only complaint is it dries out my nose and gives me nose bleeds that worsen as the concentration raises. As for flights I have no idea. I will be taking my first flight since oxygen next month and have been clueless as to how I can recieve permission for oxygen during the flight. Oxygen can never hurt and you may appreciate the difference it makes. Good luck!
 

kayers3

New member
muchlove: Call your O2 company and tell them that you are flying and see if they provide POCs for flights. Oftentimes the company will take care of the paperwork they need from the doc. If not, they can e-mail/mail/fax you the paper work they would need and you can bring it to your doc to be filled out. Then ask your doc to fax it back to the company. I have Apria and I just call them and give them my flight specs and they take care of the rest. Then I pick up the POC and paperwork to show the airline.

If your O2 company does not provide POCs then airlines that do not offer onboard O2 (which is most) do have companies they use and can direct you to. Either way they will probably send you the paperwork they need filled out by your doctor.

I would contact your O2 company first, and then they can tell you what to do from there. If that doesn't work, call the airline. I think it usually ends up costing me at least a couple hundred dollars, so keep that in mind. I don't know when you are flying out, but I think many places need around two weeks, so I would try to set it up as soon as possible.

Hope that helps! Good luck. Also if you are looking for airlines that offer onboard O2 (American Airlines and I think United are the only two that you can rent from the airline itself - but you have to make sure your flight is ACTUALLY on AA or UA plane)
 

kayers3

New member
muchlove: Call your O2 company and tell them that you are flying and see if they provide POCs for flights. Oftentimes the company will take care of the paperwork they need from the doc. If not, they can e-mail/mail/fax you the paper work they would need and you can bring it to your doc to be filled out. Then ask your doc to fax it back to the company. I have Apria and I just call them and give them my flight specs and they take care of the rest. Then I pick up the POC and paperwork to show the airline.

If your O2 company does not provide POCs then airlines that do not offer onboard O2 (which is most) do have companies they use and can direct you to. Either way they will probably send you the paperwork they need filled out by your doctor.

I would contact your O2 company first, and then they can tell you what to do from there. If that doesn't work, call the airline. I think it usually ends up costing me at least a couple hundred dollars, so keep that in mind. I don't know when you are flying out, but I think many places need around two weeks, so I would try to set it up as soon as possible.

Hope that helps! Good luck. Also if you are looking for airlines that offer onboard O2 (American Airlines and I think United are the only two that you can rent from the airline itself - but you have to make sure your flight is ACTUALLY on AA or UA plane)
 

Hardak

New member
How do you feel when you wake up, do you wake up rested refreshed? Common early sign that your O2 is falling while asleep is waking up having slept well but just not feeling rested. But then again all sleep issues have the "You woke up not feeling rested." as there first hint that something is going on.
 

Hardak

New member
How do you feel when you wake up, do you wake up rested refreshed? Common early sign that your O2 is falling while asleep is waking up having slept well but just not feeling rested. But then again all sleep issues have the "You woke up not feeling rested." as there first hint that something is going on.
 

nocode

New member
Thanks for your responses. When I woke up I had an o2 sat of 95% but I think that's normal because I had just been asleep, so it goes up right?

I'll find out the results in my next appointment, on May 23. I'll keep you posted!
 

nocode

New member
Thanks for your responses. When I woke up I had an o2 sat of 95% but I think that's normal because I had just been asleep, so it goes up right?

I'll find out the results in my next appointment, on May 23. I'll keep you posted!
 

Tisha

New member
Sats do go up, so don't freak out!! I've had them low for years, then been up to 100% saturation (or 99% on other machines), down to 92 when sick, then back up to 97...
And lung function does go back up too!
 

Tisha

New member
Sats do go up, so don't freak out!! I've had them low for years, then been up to 100% saturation (or 99% on other machines), down to 92 when sick, then back up to 97...
And lung function does go back up too!
 

static

New member
Pretty much what they said.

Mine has been anywhere from 88% to 99%, and I know this because I did get a pulse ox (go to your local sports store like REI). The 88% was after a pretty hard work-out right after a hospital stay, and I get 99s at moderately active times of the day.

As far as oxygen, wait for the sleep study then see.
 

static

New member
Pretty much what they said.

Mine has been anywhere from 88% to 99%, and I know this because I did get a pulse ox (go to your local sports store like REI). The 88% was after a pretty hard work-out right after a hospital stay, and I get 99s at moderately active times of the day.

As far as oxygen, wait for the sleep study then see.
 

nocode

New member
I have my appointment today in a few hours, have to say I'm pretty nervous but definitely more positive than last week (depressionville!).
Also, I stopped working last week and I already feel better, what a difference, it was a good move. I feel way more energized.

In answer to some of your posts - I feel rested when I wake up, no headaches and I sleep through the night. But I have a feeling I'll need the O2 because the O2 sat before sleep was at 92-93%, which I think is pretty low.

I did get my blood O2 level tested recently at rest and during exercise, after which the doctor ordered me to do pulmonary rehab. I went there 2 weeks ago and the physiotherapist just taught me a breathing technique and sent me home. That's all! Is this the norm? I have a feeling it should be way more thorough than this.
She'll get me started on physiotherapy soon - which she said consists of exercising under supervision at the clinic - could this be it?

I'll get an oximeter, it's definitely in order.

OK, will let you know the results of the sleep study!
 

nocode

New member
I have my appointment today in a few hours, have to say I'm pretty nervous but definitely more positive than last week (depressionville!).
Also, I stopped working last week and I already feel better, what a difference, it was a good move. I feel way more energized.

In answer to some of your posts - I feel rested when I wake up, no headaches and I sleep through the night. But I have a feeling I'll need the O2 because the O2 sat before sleep was at 92-93%, which I think is pretty low.

I did get my blood O2 level tested recently at rest and during exercise, after which the doctor ordered me to do pulmonary rehab. I went there 2 weeks ago and the physiotherapist just taught me a breathing technique and sent me home. That's all! Is this the norm? I have a feeling it should be way more thorough than this.
She'll get me started on physiotherapy soon - which she said consists of exercising under supervision at the clinic - could this be it?

I'll get an oximeter, it's definitely in order.

OK, will let you know the results of the sleep study!
 

nocode

New member
The machine didn't work! It didn't register anything. They said this has never happened before. Will have to go again and repeat the test.

He also said I shouldn't worry because he's not doing this because he sees a decline, but because we recently found out that I breathe ineffectively and if I need O2 at night it'll be to protect the heart from getting damaged in the future (my heart is fine now).

We'll see.
 

nocode

New member
The machine didn't work! It didn't register anything. They said this has never happened before. Will have to go again and repeat the test.

He also said I shouldn't worry because he's not doing this because he sees a decline, but because we recently found out that I breathe ineffectively and if I need O2 at night it'll be to protect the heart from getting damaged in the future (my heart is fine now).

We'll see.
 
Oops, looks like we both posted at the same time...

Couldn't agree more with what's been said above. Gotta have your own pulse-ox, these new lower numbers don't necessarily mean all the worst stuff in terms of progression. And re:transplant. Way more info required but ask your CF doc for sure if you should be evaluated (you won't have to make any decisions or commitments to be evaluated).

I've required O2 with exercise for ~10 years, with sleep for ~2 years and flights somewhere in between (the threshold I use in all of those cases per my docs is sats <90). All of those required some mental adjusting but were never as big of a deal as I thought they were. I've even required it 24/7 for some bouts for weeks or months.

Hope you get some peace while in the hospital!
 
Oops, looks like we both posted at the same time...

Couldn't agree more with what's been said above. Gotta have your own pulse-ox, these new lower numbers don't necessarily mean all the worst stuff in terms of progression. And re:transplant. Way more info required but ask your CF doc for sure if you should be evaluated (you won't have to make any decisions or commitments to be evaluated).

I've required O2 with exercise for ~10 years, with sleep for ~2 years and flights somewhere in between (the threshold I use in all of those cases per my docs is sats <90). All of those required some mental adjusting but were never as big of a deal as I thought they were. I've even required it 24/7 for some bouts for weeks or months.

Hope you get some peace while in the hospital!
 
Top