Starting Oxygen at Night

M

mamerth

New member
They day has finally come.... I am going to be starting oxgyen at night. I did a sleep study last weekend and I guess my numbers were horrible. I haven't heard what they are and I am too freaked to ask. I do know that just laying down on my pillows my numbers dipped down to 88% at the beginning of the night. They are going to put me on 1-2 liters.
I have been having horrible sleep... waking up with the bed completely tore up and feeling exhausted. Headaches and feeling dull until 9 am. I have also been waking up and feeling startled and alarmed. Must be dips in oxygen or something....
Any advice for getting used to oxgyen at night?? How do you manage the tubes without gettind tied up in them?? Any issues with a dry nose??
I don't need a C-pap.... I think that is what they are called. No sleep apnea just horrible oxygen levels at night.
I am asking for a 6 minute walk test for next months clinic appointment. I have been getting winded and sudden headaches while walking with my family this past weekend.
CF is not winning but changing the rules a bit on me.
 
M

mamerth

New member
They day has finally come.... I am going to be starting oxgyen at night. I did a sleep study last weekend and I guess my numbers were horrible. I haven't heard what they are and I am too freaked to ask. I do know that just laying down on my pillows my numbers dipped down to 88% at the beginning of the night. They are going to put me on 1-2 liters.
I have been having horrible sleep... waking up with the bed completely tore up and feeling exhausted. Headaches and feeling dull until 9 am. I have also been waking up and feeling startled and alarmed. Must be dips in oxygen or something....
Any advice for getting used to oxgyen at night?? How do you manage the tubes without gettind tied up in them?? Any issues with a dry nose??
I don't need a C-pap.... I think that is what they are called. No sleep apnea just horrible oxygen levels at night.
I am asking for a 6 minute walk test for next months clinic appointment. I have been getting winded and sudden headaches while walking with my family this past weekend.
CF is not winning but changing the rules a bit on me.
 
J

JaneCFer

New member
Hey, sorry to hear you are having saturation issues, I can empathize. I get nostril irritation sometimes. Vasaline works well for that. I haven't had any problems with the tubing. Good luck with your testing.
 
J

JaneCFer

New member
Hey, sorry to hear you are having saturation issues, I can empathize. I get nostril irritation sometimes. Vasaline works well for that. I haven't had any problems with the tubing. Good luck with your testing.
 
J

JustDucky

New member
Nasal irritation is the most bothersome as Jane said.....I wouldn't put vaseline in my nostrils though, anything petroleum based is a no no as it can be aspirated into the lungs and cause a funky pneumonia. I suggest Ayr (water based lubricant), even K Y Jelly (fragrance free).....as long as it is water based. Also, a sodium chloride nasal mist helps some. When they set you up, ask for a humidifier bottle to be attached to the concentrator to add humidfication otherwise you will find that your nostrils will get sore quicker....and it is just more comfortable. As far as tangles....if you don't toss and turn, you should be okay. If you are the type to do so, then you might find your tubing wrapped around you like spaghetti on a fork lol! It has happened to me a few times. Don't even ask about my vent tubing <img src="i/expressions/face-icon-small-wink.gif" border="0"> If it is too much of a problem, you could tape the cannula to your face to keep it in your nose, but then your poor skin may just rebel. I guess you'll have to play it by ear.

So sorry you are in the O2 club, but hopefully you'll be feeling better in the mornings after a night of good oxygenation. Hang in there, it gets better.

Hugs, Jenn 40 w/CF
 
J

JustDucky

New member
Nasal irritation is the most bothersome as Jane said.....I wouldn't put vaseline in my nostrils though, anything petroleum based is a no no as it can be aspirated into the lungs and cause a funky pneumonia. I suggest Ayr (water based lubricant), even K Y Jelly (fragrance free).....as long as it is water based. Also, a sodium chloride nasal mist helps some. When they set you up, ask for a humidifier bottle to be attached to the concentrator to add humidfication otherwise you will find that your nostrils will get sore quicker....and it is just more comfortable. As far as tangles....if you don't toss and turn, you should be okay. If you are the type to do so, then you might find your tubing wrapped around you like spaghetti on a fork lol! It has happened to me a few times. Don't even ask about my vent tubing <img src="i/expressions/face-icon-small-wink.gif" border="0"> If it is too much of a problem, you could tape the cannula to your face to keep it in your nose, but then your poor skin may just rebel. I guess you'll have to play it by ear.

So sorry you are in the O2 club, but hopefully you'll be feeling better in the mornings after a night of good oxygenation. Hang in there, it gets better.

Hugs, Jenn 40 w/CF
 
M

mamerth

New member
I will email my nurse and ask them to include a humidifier. It is pretty dry in my state so many it will be standard.
 
M

mamerth

New member
I will email my nurse and ask them to include a humidifier. It is pretty dry in my state so many it will be standard.
 
B

beleache

New member
Hi Carrie, Sorry to hear that you will be starting o
o2 at night .. I hope that it gives you much relief though <img src="i/expressions/face-icon-small-smile.gif" border="0"> Take care <3 joni
 
B

beleache

New member
Hi Carrie, Sorry to hear that you will be starting o
o2 at night .. I hope that it gives you much relief though <img src="i/expressions/face-icon-small-smile.gif" border="0"> Take care <3 joni
 
P

pencf

Guest
Hey Mamerth,
My daughter came home from the hospital this fall with o2, and I get the freaked out thing! She wasn't freaked out, but I was. However, for me, just accepting that it really is the best thing for you and when you feel better, getting a real restful nights sleep, you will realize the wisdom.
My daughter did have issue with the nasal canula making her dry but our concentrator comes with a bottle you can put sterile water in. (FYI: ALWAYS make sure they send you sterile water, don't accept the company recommending Tapwater or distilled water at the grocery). I think you will find since you are getting the proper amount of o2 while sleeping you probably won't roll around as much, so it falling off won't be a big deal. And another added benefit to sleeping with o2 (if you have trouble keeping weight on) you won't be burning so many calories working so hard to breath in your sleep, for us, that was a big deal! All day long working so hard to take in 4000 to 5000 a day, only to burn some of them up at night. In case you are wondering, my daughter is 16 yrs old, at dischrge in Oct. had a resting pulse ox of 90 to 92, and had lost weight, was about 96 lbs. She now has a resting pulse ox of 95 to 96, and weighs about 108 lbs and is 5'6".
Hang in there, I know giving up something else to CF is disheartening, but this one isn't that bad, I promise!
God Bless.
 
P

pencf

Guest
Hey Mamerth,
My daughter came home from the hospital this fall with o2, and I get the freaked out thing! She wasn't freaked out, but I was. However, for me, just accepting that it really is the best thing for you and when you feel better, getting a real restful nights sleep, you will realize the wisdom.
My daughter did have issue with the nasal canula making her dry but our concentrator comes with a bottle you can put sterile water in. (FYI: ALWAYS make sure they send you sterile water, don't accept the company recommending Tapwater or distilled water at the grocery). I think you will find since you are getting the proper amount of o2 while sleeping you probably won't roll around as much, so it falling off won't be a big deal. And another added benefit to sleeping with o2 (if you have trouble keeping weight on) you won't be burning so many calories working so hard to breath in your sleep, for us, that was a big deal! All day long working so hard to take in 4000 to 5000 a day, only to burn some of them up at night. In case you are wondering, my daughter is 16 yrs old, at dischrge in Oct. had a resting pulse ox of 90 to 92, and had lost weight, was about 96 lbs. She now has a resting pulse ox of 95 to 96, and weighs about 108 lbs and is 5'6".
Hang in there, I know giving up something else to CF is disheartening, but this one isn't that bad, I promise!
God Bless.
 
P

pencf

Guest
Hey Mamerth,
My daughter came home from the hospital this fall with o2, and I get the freaked out thing! She wasn't freaked out, but I was. However, for me, just accepting that it really is the best thing for you and when you feel better, getting a real restful nights sleep, you will realize the wisdom.
My daughter did have issue with the nasal canula making her dry but our concentrator comes with a bottle you can put sterile water in. (FYI: ALWAYS make sure they send you sterile water, don't accept the company recommending Tapwater or distilled water at the grocery). I think you will find since you are getting the proper amount of o2 while sleeping you probably won't roll around as much, so it falling off won't be a big deal. And another added benefit to sleeping with o2 (if you have trouble keeping weight on) you won't be burning so many calories working so hard to breath in your sleep, for us, that was a big deal! All day long working so hard to take in 4000 to 5000 a day, only to burn some of them up at night. In case you are wondering, my daughter is 16 yrs old, at dischrge in Oct. had a resting pulse ox of 90 to 92, and had lost weight, was about 96 lbs. She now has a resting pulse ox of 95 to 96, and weighs about 108 lbs and is 5'6".
Hang in there, I know giving up something else to CF is disheartening, but this one isn't that bad, I promise!
God Bless.
 
P

pencf

Guest
Hey Mamerth,
My daughter came home from the hospital this fall with o2, and I get the freaked out thing! She wasn't freaked out, but I was. However, for me, just accepting that it really is the best thing for you and when you feel better, getting a real restful nights sleep, you will realize the wisdom.
My daughter did have issue with the nasal canula making her dry but our concentrator comes with a bottle you can put sterile water in. (FYI: ALWAYS make sure they send you sterile water, don't accept the company recommending Tapwater or distilled water at the grocery). I think you will find since you are getting the proper amount of o2 while sleeping you probably won't roll around as much, so it falling off won't be a big deal. And another added benefit to sleeping with o2 (if you have trouble keeping weight on) you won't be burning so many calories working so hard to breath in your sleep, for us, that was a big deal! All day long working so hard to take in 4000 to 5000 a day, only to burn some of them up at night. In case you are wondering, my daughter is 16 yrs old, at dischrge in Oct. had a resting pulse ox of 90 to 92, and had lost weight, was about 96 lbs. She now has a resting pulse ox of 95 to 96, and weighs about 108 lbs and is 5'6".
Hang in there, I know giving up something else to CF is disheartening, but this one isn't that bad, I promise!
God Bless.
 
M

mamerth

New member
Is it okay to use a heating blanket?

Do I use the oxygen for afternoon naps?

My cf nurse gave very little instruction. Only what oxygen company told this afternoon....
Basically how to use the machine.

Any more don'ts or recommendations ??
 
M

mamerth

New member
Is it okay to use a heating blanket?

Do I use the oxygen for afternoon naps?

My cf nurse gave very little instruction. Only what oxygen company told this afternoon....
Basically how to use the machine.

Any more don'ts or recommendations ??
 
J

JustDucky

New member
I would say any time you are sleeping, you should wear your O2 as your levels drop when you are snoozing. Even if it is for a hour, it is still beneficial to you! Heating blankets I think are okay, the big thing was always never use any fire near O2 or cook over a gas stove with it. Common sense things like that. I also recommend sterile water in the humidifer bottle, they are disposable so make sure you change them out twice a month.
The concentrator can be noisy, so if you can, place it outside of your room in the hallway....at first, it is unnerving but you will get used to it.
Oh, cannulas can hurt your ears at first, you can either purchase cannulas with padding built into them or you can take gauze and tape it around the area where it rests on your ears and that will help. I have been wearing O2 for quite some time and find that on occasion the skin gets sore, especially in the summer months when I sweat more.
I can't think of anything else......but if you do, just give a shout and someone will answer.

Jenn 40 w/CF
 
J

JustDucky

New member
I would say any time you are sleeping, you should wear your O2 as your levels drop when you are snoozing. Even if it is for a hour, it is still beneficial to you! Heating blankets I think are okay, the big thing was always never use any fire near O2 or cook over a gas stove with it. Common sense things like that. I also recommend sterile water in the humidifer bottle, they are disposable so make sure you change them out twice a month.
The concentrator can be noisy, so if you can, place it outside of your room in the hallway....at first, it is unnerving but you will get used to it.
Oh, cannulas can hurt your ears at first, you can either purchase cannulas with padding built into them or you can take gauze and tape it around the area where it rests on your ears and that will help. I have been wearing O2 for quite some time and find that on occasion the skin gets sore, especially in the summer months when I sweat more.
I can't think of anything else......but if you do, just give a shout and someone will answer.

Jenn 40 w/CF
 
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