Oxygen at night - terrified

N

nocode

New member
Hi,

I was recently informed that I'm going to do the sleep study soon. I am so terrified of the possibility that I'll have to start using night oxygen in the near future as I truly feel am I not mentally ready to come to terms with that (who is though?)

Also I am very surprised that this came along because I feel that I sleep absolutely fine. I always sleep all night and I wake up completely rested. And no headaches.
I did a test last month which indicated that my breathing is very ineffective and so it seems that they are afraid that I suffer from sleep apnea.
Is there a difference between needing oxygen for sleep apnea and needing it due to low sats? And would I feel anything if I do have sleep apnea or is it like a silent monster?
Thanks for your input guys. Also, any encouraging words in case I do need night oxygen might be helpful in helping me to very slowly accept this reality that will, sooner or later, present itself.
 
N

nocode

New member
Hi,

I was recently informed that I'm going to do the sleep study soon. I am so terrified of the possibility that I'll have to start using night oxygen in the near future as I truly feel am I not mentally ready to come to terms with that (who is though?)

Also I am very surprised that this came along because I feel that I sleep absolutely fine. I always sleep all night and I wake up completely rested. And no headaches.
I did a test last month which indicated that my breathing is very ineffective and so it seems that they are afraid that I suffer from sleep apnea.
Is there a difference between needing oxygen for sleep apnea and needing it due to low sats? And would I feel anything if I do have sleep apnea or is it like a silent monster?
Thanks for your input guys. Also, any encouraging words in case I do need night oxygen might be helpful in helping me to very slowly accept this reality that will, sooner or later, present itself.
 
W

windex125

Guest
I am not sure this may help but I've been using o2 for abt 4-5yrs at night only 3liters. My pfts are high 40's I was not sure I needed it but I only have one functioing lung the other is completely dieseased and does not show up on the xray anymore. My husband on the other hand (no CF) has sleep apnea for abt 10yrs. now and sleeps with a CP machine. His is forced air smaller machine, my comes from a concentrator I do not feel much difference, but I am sure my sat's drop at night. Do not be afriad of any of this, if you need it - it will only be helpful. Pat -57/CF
 
W

windex125

Guest
I am not sure this may help but I've been using o2 for abt 4-5yrs at night only 3liters. My pfts are high 40's I was not sure I needed it but I only have one functioing lung the other is completely dieseased and does not show up on the xray anymore. My husband on the other hand (no CF) has sleep apnea for abt 10yrs. now and sleeps with a CP machine. His is forced air smaller machine, my comes from a concentrator I do not feel much difference, but I am sure my sat's drop at night. Do not be afriad of any of this, if you need it - it will only be helpful. Pat -57/CF
 
H

Havoc

New member
I think it's more likely that you are desaturating at night and not that you suffer from sleep apnea. Even though it's kind of scary, it might be a bit of a blessing. You may feel rested, but I have heard patients say to me that they didn't realize how badly they actually felt until they started treatment. Subtle changes over time can be deceiving and you accept your decline as your norm, when it can actually be a lot better (in terms of health and how you feel). Best of luck!
 
H

Havoc

New member
I think it's more likely that you are desaturating at night and not that you suffer from sleep apnea. Even though it's kind of scary, it might be a bit of a blessing. You may feel rested, but I have heard patients say to me that they didn't realize how badly they actually felt until they started treatment. Subtle changes over time can be deceiving and you accept your decline as your norm, when it can actually be a lot better (in terms of health and how you feel). Best of luck!
 
M

mamerth

New member
I just started oxgyen at night due to desatting. It was scary for me too but now that I have been on it a few weeks I LOVE IT. Until I got the creap and crude that I have now... I was enjoying the new found energy and feeling more alert throughout the day.
 
M

mamerth

New member
I just started oxgyen at night due to desatting. It was scary for me too but now that I have been on it a few weeks I LOVE IT. Until I got the creap and crude that I have now... I was enjoying the new found energy and feeling more alert throughout the day.
 
N

nocode

New member
Part of the reason why this is also so scary is that i'm going to move in with my boyfriend at the end of this year. Even though he loves/ accepts me and all CF related perils, I am cringing at the fact that we might have to start our new chapter in life together with the dark cloud that an oxygen tank next to the bed represents. I think if I do need it, I might postpone it for a few months until the idea settles in... and until I settle in myself at the new place too. Hopefully a few months won't make a difference.
Thanks for your input so far.
 
N

nocode

New member
Part of the reason why this is also so scary is that i'm going to move in with my boyfriend at the end of this year. Even though he loves/ accepts me and all CF related perils, I am cringing at the fact that we might have to start our new chapter in life together with the dark cloud that an oxygen tank next to the bed represents. I think if I do need it, I might postpone it for a few months until the idea settles in... and until I settle in myself at the new place too. Hopefully a few months won't make a difference.
Thanks for your input so far.
 
B

Brad

New member
... I use O2 at night due to mild apnea ..I did the sleep study also.It was a pain for me.
I had a tough time going to sleep... My sats ranged from 93 to 96% but had some gaps.
I use 1.5 ltrs... I sleep much better. Getting used to the sound of the O2 generator
takes time and some of them can heat the room up a bit,,
I would Strong;y Request pne of the newer smaller models..The older models are bigger and create more heat.
Good Luck
 
B

Brad

New member
... I use O2 at night due to mild apnea ..I did the sleep study also.It was a pain for me.
I had a tough time going to sleep... My sats ranged from 93 to 96% but had some gaps.
I use 1.5 ltrs... I sleep much better. Getting used to the sound of the O2 generator
takes time and some of them can heat the room up a bit,,
I would Strong;y Request pne of the newer smaller models..The older models are bigger and create more heat.
Good Luck
 
S

stillkicking

New member
I was scared when I first had to start using O2, I thought it was the beginning of the end. It wasn't. I didn't think I really needed it, but like Havoc said, it was such a night & day difference, because things change slowly and we don't notice it as much. I felt so much better, I couldn't believe how dramatic it was. If you have fears about it, try it for a week and see how you feel. I think you'll like the difference. If you don't notice any difference give it back. It does not mean your dying or anything like that. I keep my concentrator out in the hall, I have one of the newer, smaller ones so the noise isn't too bad, but I hate the heat it produces. I think you'll quickly discover it's not as big a deal as we emotionally think it is. Best wishes!
 
S

stillkicking

New member
I was scared when I first had to start using O2, I thought it was the beginning of the end. It wasn't. I didn't think I really needed it, but like Havoc said, it was such a night & day difference, because things change slowly and we don't notice it as much. I felt so much better, I couldn't believe how dramatic it was. If you have fears about it, try it for a week and see how you feel. I think you'll like the difference. If you don't notice any difference give it back. It does not mean your dying or anything like that. I keep my concentrator out in the hall, I have one of the newer, smaller ones so the noise isn't too bad, but I hate the heat it produces. I think you'll quickly discover it's not as big a deal as we emotionally think it is. Best wishes!
 
M

muchlove

New member
Im on 4 liters O2 all day and night. It started out just at night. It made a huge diference. Before the O2 I felt like I needed 12+ hours of sleep every night because I was never rested. Now I feel fully energetic with 7-8 hours of sleep. I have better concentration in classes and when studying too. And I can climb stairs again!! I absolutely hated the idea at first especially when I started using it during the day because I was really embarrased to navigate the college with it but its turned out fine. As far as sleep apnea I had that alot when I was younger and never felt or noticed it. Thankfully that isnt an issue anymore though! I wish you the best of luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

muchlove

New member
Im on 4 liters O2 all day and night. It started out just at night. It made a huge diference. Before the O2 I felt like I needed 12+ hours of sleep every night because I was never rested. Now I feel fully energetic with 7-8 hours of sleep. I have better concentration in classes and when studying too. And I can climb stairs again!! I absolutely hated the idea at first especially when I started using it during the day because I was really embarrased to navigate the college with it but its turned out fine. As far as sleep apnea I had that alot when I was younger and never felt or noticed it. Thankfully that isnt an issue anymore though! I wish you the best of luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

cindylou

Guest
I'm curious - for those of you on night oxygen, what are your PFTs like? What are your daytime saturation numbers like?
 
C

cindylou

Guest
I'm curious - for those of you on night oxygen, what are your PFTs like? What are your daytime saturation numbers like?
 
N

nocode

New member
Hi guys, thanks for your replies. I've been really depressed about this, it's incredible how much this is shaking me up. Like 'stillkicking' said, it feels like the beginning of the end no doubt. And, AND, get this, last week I found out I was being made redundant at work - at a job that I loved and did for the last 4 years. Couldn't have come at a worse time.

I got the date of my appointments today - will go in for the sleep study on May 15 and will get the results on May 23.

To those of you who say you felt better - is that after just night oxygen or you only felt a significant difference when you were on it 24/7?
And I know this is very relative but, in your experience, who long did it take you to go from night oxygen to day and night O2?
Thanks all.
 
N

nocode

New member
Hi guys, thanks for your replies. I've been really depressed about this, it's incredible how much this is shaking me up. Like 'stillkicking' said, it feels like the beginning of the end no doubt. And, AND, get this, last week I found out I was being made redundant at work - at a job that I loved and did for the last 4 years. Couldn't have come at a worse time.

I got the date of my appointments today - will go in for the sleep study on May 15 and will get the results on May 23.

To those of you who say you felt better - is that after just night oxygen or you only felt a significant difference when you were on it 24/7?
And I know this is very relative but, in your experience, who long did it take you to go from night oxygen to day and night O2?
Thanks all.
 
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