Oxygen questions-please help.

[Marcy]

Well, recently I did a test where I slept with the oxygen thing on
my finger.  Somehow, the place where I got the machine had
problems down loading my results for insurance, so I have to redo
it again-UGH!!!.  However, the lady told me according to what
she saw, I qualify for oxygen because it was below 89 for 8 1/2
hours. <b><span style=" text-decoration: underline;"><i>(Like this
was a prize following a good test grade)</i></b>  I am
soooooo upset and depressed. I dont know anyone who has gotten off
oxygen once they have started. ( I hope I am so wrong)I know what
she said is true because I watched the machine alot that night and
it did not go above 91-it was mostly around 86. Sooo my questions
are:  <br>
~Have any of you got on oxygen for a while and got off of it? (Not
just after surgery or a during a hospital stay)<br>
~Is it really possible for me to have so much junk in my chest that
it would lower my oxygen-and I have no fever or even feel
sick? (I feel good.)<br>
~My blood work showed my carbon dioxide is a good level, how is
that possible if I am not taking in enough oxygen?<br>
Thanks you guys-<br>
Marcy

 

[EnergyGal]

Hi Marcy

I would just simply talk to your doctor and ask them all your questions. There are reasons for low saturations. If you do not use the oxygen then you are putting your health at risk. Just because you need oxygen at bedtime does not mean you need it during the day.

Have you had an EChO done lately? If your heart is slightly enlarged due to the nature of CF then it is possible that you might need oxygen at night. when your heart is working harder because of congested lungs, there is a greater demand for oxygen.

I slept with oxygen as needed at bedtime many years before I needed a transplant. I think I used oxygen for almost ten years at night.

Take this seriously and you will feel much better.

 

[alwaysursamor]

Don't freak out until you redo the test. I recently did a sleep
study and we discovered that when lay down to go to sleep my 02
stat is about 90-92, But during the day its 98-100. So my doc said
I don't need oxygen. I asked him when my stats are low and he said
its because with CF we breathe even less while sleeping. Talk to
your doctor.

 

[anonymous]

How did you even know to take this test if you felt well. That makes me feel like I should take this test!!

I am no help at all because I am not on oxygen at all but I hope you find your answers soon and that you feel better (although I guess you do feel fine but you know what I mean<img src="i/expressions/face-icon-small-smile.gif" border="0">

Sue 24w/CF

 

[anonymous]

I think that if you do have alot of junk in your lungs then your O2 will be lower. Mucous plugs could be the culperate! Plus Cfers breathe very shallow when they sleep.

 

[Marcy]

Thanks so much for all of your replys.  <br>
The Dr had me do this test because I have had some memory loss.
 Nothing serious, I just forget things now and then.  My
husband was geting aggravated with me, I didnt realize I was
forgetting things.  Then I started to catch myself forgetting
why my child was in time out or to pay a bill etc.  So I
wanted to check this.  I am usually way on top of things.<br>
Thanks so much for all of your help!!!  It is scary to me, but
I will deal with it like everything else we have to do.<br>
Best wishes<br>
Marcy

 

[my65roses4me]

<span style=" font-size: x-small;">Rut Roh!<br>
I have had memory loss lately too. I was going to wait until my
scheduled Dr's appt. But from the sounds of it I better go sooner!
Maybe I am not breathing well at night too.

 

[Debi]

I have been dealing with O2 for about 10 years now, so I will share my experience. Doesn't mean it will be true for you, but at least you'll have a bit more info.

1) yes, you can be on O2 for awhile a get off of it. 10 years ago I was on it for 6 months recovering from a very bad exacerbation, but I kept getting stronger and eventually was off completely. They wean you off of it. I've been off and on occasionally since then. Right now is the longest I've been on, and it's going to take some concerted effort on my part in the way of exercise to get off again. I'm just being lazy.

2) yes, having lots of junk in your lungs impedes your ability to take in enough oxygen. Inhaling takes effort, and at night you naturally use less effort because you can't focus on breathing. For non-cfers, no problems. For those whose lungs are gunked up, can be a problem

3) when you inhale you inhale O2. When you exhale, the O2 left after traveling through your body and back into your lungs comes out as CO2, or carbon dioxide. In your case, you are still able to exert enough on your exhalation to get rid of the CO2. It's not building up in your system. Good news!

It's good to have it rechecked. You don't want to overstress your lungs and heart by being below 90 for an extended period of time. I'm hoping everything comes out great on the next test.

Debi
54 w/cf

 

[anonymous]

Well I have been forgetting things for awhile now and thought that i was just too stressed. I have also been feeling horrible. sounds like a good time for that doctor's appt.

Sue 24w/CF

 

[anonymous]

my o2 levels while sleeping have been 88-90 for a long time. O2 levels drop when sleeping, it's normal. But with CF they just drop a little further than most would like.

 

[Jane]

My boys did an O2 study last spring when they were sick. The doctor said they dropped down below 90 a few times and ordered O2 for home. We've never used it because everytime we check, its fine (97-100 day and 92-94 night).

 

[LisaV]

As Risa says talk to your doc again.
But if the study shows you need it and you're symptomaic for low O2 (like memory loss from brain damage) which you're partner can spot way before you could, I'd say that's a real good reason to use it.

Folks can be on it for years and years at night before they need it during the day as well. You don't have any control how you breathe when you sleep so you breathe more shallowly and therefore can have lower O2 sats then.

You need to protect your brain and heart from effects of low O2. Heck CF effects enough organs directly. Why let the secondary effects damage those 2 important ones?

 

[anonymous]

Just one other quick thought. There are alot of heathy (no cf) people who have "sleep apnea" who sleep with a bipap or oxygen at night.
I know for my brother (who had CF). He needed oxygen only at night due to sleep apnea for some time. Now, I also have a brother in law with the same problem (no cf, no other major health problems), and they recommended oxygen at night for the same issue. At the time my brother was on oxygen at night, a similar thing would happen, his O2 sat was fine during the day, but would drop at night.

They did a sleep study on both to determine whether or not they had apnea...
Not knowing your condition, I don't know if this is the case for you...but I figured I would let you know.

 

[katyf13]

Wearing O2 at night will make you feel better in the long run. When your O2 drops below 90, the rest of your organs have to work so much harder. Mike was stubborn about it for awhile but he found that when he wore his o2 to bed, he felt much more energized and healthy during the day!

 

[Kimmiek]

With the "memory loss";

Are you eating right? Enough carbs and protein??
Could you be low on iron?
Have you been checked for CFRD??

All of those things can effect your memory/mental state as well. I know they did with Mike. O2 sats dropping at night and are fine during the day shouldn't affect you during the day. Unless, you are unaware of your sats during lots of physical activity...

Just a thought! But defintely have them do a sleep study for other reasons at night!

 

[Kimmiek]

With the "memory loss";

Are you eating right? Enough carbs and protein??
Could you be low on iron?
Have you been checked for CFRD??

All of those things can effect your memory/mental state as well. I know they did with Mike. O2 sats dropping at night and are fine during the day shouldn't affect you during the day. Unless, you are unaware of your sats during lots of physical activity...

Just a thought! But defintely have them do a sleep study for other reasons at night!

 

[Kimmiek]

With the "memory loss";

Are you eating right? Enough carbs and protein??
Could you be low on iron?
Have you been checked for CFRD??

All of those things can effect your memory/mental state as well. I know they did with Mike. O2 sats dropping at night and are fine during the day shouldn't affect you during the day. Unless, you are unaware of your sats during lots of physical activity...

Just a thought! But defintely have them do a sleep study for other reasons at night!