Questions about Oxygen

[Lilith]

Hey, everyone. This is going to be another two-part question...

I think I'm in denial. Its getting harder and harder for me to do pretty basic things, and I'm wondering if the time's come to be on oxygen, at least part of the time.

My PFT's have been hanging in the high to mid 40's for the last six months or so. I'm getting sick more and more often, and I have to wonder if its because I'm pushing my body too hard. I've done my treatments religiously for about 4 months and have still noticed virtually no change. As far as exercise, after I graduated high school I really slacked off (I know, bad me). Walking to and from classes usually ran me out of breath, but at least I was up and moving around for half the day. Now, I live in a second-story appartment and would like to get moving again (bike rides, walks, whatever), but by the time I make it up and down the stairs I'm ready to pass out! I dread leaving the house when I'm sick just for the fact that I'll have to face those stairs again. I get winded just walking through Wal-Mart, for Pete's sake. Then the other night, Rick rolled over and woke me up, asking if I was okay. He said I was moaning loudly in my sleep, like I was in pain. I have to wonder if it's because I'm not getting enough oxygen at night anymore.

However, my doctor has yet to even bring up the idea of supplemental oxygen.

So here's my first question; for those of you on oxygen, either constantly or only some of the time, when did you first decide (or your doctor decided) that you needed it? How low were your numbers?

Here's the second question. If I do go on oxygen, is there any possiblity that I would regain lung function to the point that I could get off of it again? My thought is, if I go on oxygen, it would make it easier for me to exercise and therefore perhaps gain lung funtion back (because I don't think it's all from tissue scarring). Does that make sense to anyone else?

Any thoughts on the subject would be appreciated... I just think I'm pushing myself to keep up with my family and friends, and maybe that's causing more harm than good.

 

[Lilith]

Hey, everyone. This is going to be another two-part question...

I think I'm in denial. Its getting harder and harder for me to do pretty basic things, and I'm wondering if the time's come to be on oxygen, at least part of the time.

My PFT's have been hanging in the high to mid 40's for the last six months or so. I'm getting sick more and more often, and I have to wonder if its because I'm pushing my body too hard. I've done my treatments religiously for about 4 months and have still noticed virtually no change. As far as exercise, after I graduated high school I really slacked off (I know, bad me). Walking to and from classes usually ran me out of breath, but at least I was up and moving around for half the day. Now, I live in a second-story appartment and would like to get moving again (bike rides, walks, whatever), but by the time I make it up and down the stairs I'm ready to pass out! I dread leaving the house when I'm sick just for the fact that I'll have to face those stairs again. I get winded just walking through Wal-Mart, for Pete's sake. Then the other night, Rick rolled over and woke me up, asking if I was okay. He said I was moaning loudly in my sleep, like I was in pain. I have to wonder if it's because I'm not getting enough oxygen at night anymore.

However, my doctor has yet to even bring up the idea of supplemental oxygen.

So here's my first question; for those of you on oxygen, either constantly or only some of the time, when did you first decide (or your doctor decided) that you needed it? How low were your numbers?

Here's the second question. If I do go on oxygen, is there any possiblity that I would regain lung function to the point that I could get off of it again? My thought is, if I go on oxygen, it would make it easier for me to exercise and therefore perhaps gain lung funtion back (because I don't think it's all from tissue scarring). Does that make sense to anyone else?

Any thoughts on the subject would be appreciated... I just think I'm pushing myself to keep up with my family and friends, and maybe that's causing more harm than good.

 

[Lilith]

Hey, everyone. This is going to be another two-part question...

I think I'm in denial. Its getting harder and harder for me to do pretty basic things, and I'm wondering if the time's come to be on oxygen, at least part of the time.

My PFT's have been hanging in the high to mid 40's for the last six months or so. I'm getting sick more and more often, and I have to wonder if its because I'm pushing my body too hard. I've done my treatments religiously for about 4 months and have still noticed virtually no change. As far as exercise, after I graduated high school I really slacked off (I know, bad me). Walking to and from classes usually ran me out of breath, but at least I was up and moving around for half the day. Now, I live in a second-story appartment and would like to get moving again (bike rides, walks, whatever), but by the time I make it up and down the stairs I'm ready to pass out! I dread leaving the house when I'm sick just for the fact that I'll have to face those stairs again. I get winded just walking through Wal-Mart, for Pete's sake. Then the other night, Rick rolled over and woke me up, asking if I was okay. He said I was moaning loudly in my sleep, like I was in pain. I have to wonder if it's because I'm not getting enough oxygen at night anymore.

However, my doctor has yet to even bring up the idea of supplemental oxygen.

So here's my first question; for those of you on oxygen, either constantly or only some of the time, when did you first decide (or your doctor decided) that you needed it? How low were your numbers?

Here's the second question. If I do go on oxygen, is there any possiblity that I would regain lung function to the point that I could get off of it again? My thought is, if I go on oxygen, it would make it easier for me to exercise and therefore perhaps gain lung funtion back (because I don't think it's all from tissue scarring). Does that make sense to anyone else?

Any thoughts on the subject would be appreciated... I just think I'm pushing myself to keep up with my family and friends, and maybe that's causing more harm than good.

 

[Debi]

I have been on and off oxygen over the past 9 years. Generally, if your O2 saturation is below 90 at rest, you need supplemental oxygen. The saturation is measured by an oximeter. The moaning at night is a good indicator - I've had the same thing happen to me.

Yes, you can go on O2 for awhile (like during an exacerbation, or when you've gotten extremely run down or out of shape) and then get off of it. I have done that many times. The important thing is not to let yourself go too far downhill before you have it checked out. I would encourage you to talk to your doctor soon about the struggles you're having with daily activities. Not to scare you, but if your sats go too far down, you can actually go into respiratory distress or arrest.

It's great that you are seeking input. It sounds to me like IF you need O2, it would be temporary while you regain more fitness. Best wishes, and feel free to PM me if you have more questions.

 

[Debi]

I have been on and off oxygen over the past 9 years. Generally, if your O2 saturation is below 90 at rest, you need supplemental oxygen. The saturation is measured by an oximeter. The moaning at night is a good indicator - I've had the same thing happen to me.

Yes, you can go on O2 for awhile (like during an exacerbation, or when you've gotten extremely run down or out of shape) and then get off of it. I have done that many times. The important thing is not to let yourself go too far downhill before you have it checked out. I would encourage you to talk to your doctor soon about the struggles you're having with daily activities. Not to scare you, but if your sats go too far down, you can actually go into respiratory distress or arrest.

It's great that you are seeking input. It sounds to me like IF you need O2, it would be temporary while you regain more fitness. Best wishes, and feel free to PM me if you have more questions.

 

[Debi]

I have been on and off oxygen over the past 9 years. Generally, if your O2 saturation is below 90 at rest, you need supplemental oxygen. The saturation is measured by an oximeter. The moaning at night is a good indicator - I've had the same thing happen to me.

Yes, you can go on O2 for awhile (like during an exacerbation, or when you've gotten extremely run down or out of shape) and then get off of it. I have done that many times. The important thing is not to let yourself go too far downhill before you have it checked out. I would encourage you to talk to your doctor soon about the struggles you're having with daily activities. Not to scare you, but if your sats go too far down, you can actually go into respiratory distress or arrest.

It's great that you are seeking input. It sounds to me like IF you need O2, it would be temporary while you regain more fitness. Best wishes, and feel free to PM me if you have more questions.

 

[Joanne]

Lilith,

Your doc may not of mentioned oxygen, but you can.

Lack of oxygen is not good for your brain, or your heart, so you have reason to inquire about it.

Most times people desaturate during the night, when you are not able to monitor your breathing, your body is relaxed, you don't breathe deep enough. So if you are struggling during the day, it is pretty safe to say that at sleep you are lacking oxygen.

Have them do a 6 minute walk, and a night time evaluation.

If getting on oxygen means you might exercise more, then it is really worth it.

Look into it please.

Joanne

 

[Joanne]

Lilith,

Your doc may not of mentioned oxygen, but you can.

Lack of oxygen is not good for your brain, or your heart, so you have reason to inquire about it.

Most times people desaturate during the night, when you are not able to monitor your breathing, your body is relaxed, you don't breathe deep enough. So if you are struggling during the day, it is pretty safe to say that at sleep you are lacking oxygen.

Have them do a 6 minute walk, and a night time evaluation.

If getting on oxygen means you might exercise more, then it is really worth it.

Look into it please.

Joanne

 

[Joanne]

Lilith,

Your doc may not of mentioned oxygen, but you can.

Lack of oxygen is not good for your brain, or your heart, so you have reason to inquire about it.

Most times people desaturate during the night, when you are not able to monitor your breathing, your body is relaxed, you don't breathe deep enough. So if you are struggling during the day, it is pretty safe to say that at sleep you are lacking oxygen.

Have them do a 6 minute walk, and a night time evaluation.

If getting on oxygen means you might exercise more, then it is really worth it.

Look into it please.

Joanne

 

[coltsfan715]

Lilith,

Hi there. I just wanted to second some of what the others have said. I can NOT say one way or the other about the moaning, but I know when I started having O2 issues at night I would wake up constantly and always felt like I was suffocating in my sleep. I also started having EXTREME anxiety at night and claustrophobia before it was pinpointed that I was having O2 issues.

As for it being suggested I use O2. I brought it up to my doctors. I suggested that I get an overnight oximetry reading first. That came back showing that I definitely did need O2 at night at the very least.

Shortly before I started using O2 at night I began having issues with O2 during exercise. I started feeling extremely fatigued and didn't know why. I KNEW that I shouldn't be getting so exhausted from walking the short distances that were wearing me out. I would walk for 10-15 minutes on the treadmill and would feel like my legs were going to collapse. I just felt SO incredibly fatigued and short of breath.

I started using the O2 on my own when I exercised just to see if I felt better, and amazingly I did NOT get the fatigued feeling in my legs as I had gotten without the O2.

I started talking to my doc about the fatigue and he suggested I use the O2 whenever I felt air hungry or overly fatigued and I basically started using O2 almost all the time at that point. When I went through the transplant evaluation they did a right heart catheterization and found that I had slight/mild pulmonary hypertension. When I talked to the transplant doc about it he said that the pulmonary hypertension was most likely caused by lack of O2 and that I needed to use O2 fulltime to prevent that from getting any worse. Pulmonary Hypertension can cause the extreme fatigue according to what my doc told me, and can also cause more involved heart issues.

If your doc isn't bringing up O2 to you then I would suggest that you maybe ask him/her about it. It won't hurt anything to at least have an oximetry reading done. It will help you to KNOW if there is an O2 problem or not.

Take Care and Best Wishes,
Lindsey

 

[coltsfan715]

Lilith,

Hi there. I just wanted to second some of what the others have said. I can NOT say one way or the other about the moaning, but I know when I started having O2 issues at night I would wake up constantly and always felt like I was suffocating in my sleep. I also started having EXTREME anxiety at night and claustrophobia before it was pinpointed that I was having O2 issues.

As for it being suggested I use O2. I brought it up to my doctors. I suggested that I get an overnight oximetry reading first. That came back showing that I definitely did need O2 at night at the very least.

Shortly before I started using O2 at night I began having issues with O2 during exercise. I started feeling extremely fatigued and didn't know why. I KNEW that I shouldn't be getting so exhausted from walking the short distances that were wearing me out. I would walk for 10-15 minutes on the treadmill and would feel like my legs were going to collapse. I just felt SO incredibly fatigued and short of breath.

I started using the O2 on my own when I exercised just to see if I felt better, and amazingly I did NOT get the fatigued feeling in my legs as I had gotten without the O2.

I started talking to my doc about the fatigue and he suggested I use the O2 whenever I felt air hungry or overly fatigued and I basically started using O2 almost all the time at that point. When I went through the transplant evaluation they did a right heart catheterization and found that I had slight/mild pulmonary hypertension. When I talked to the transplant doc about it he said that the pulmonary hypertension was most likely caused by lack of O2 and that I needed to use O2 fulltime to prevent that from getting any worse. Pulmonary Hypertension can cause the extreme fatigue according to what my doc told me, and can also cause more involved heart issues.

If your doc isn't bringing up O2 to you then I would suggest that you maybe ask him/her about it. It won't hurt anything to at least have an oximetry reading done. It will help you to KNOW if there is an O2 problem or not.

Take Care and Best Wishes,
Lindsey

 

[coltsfan715]

Lilith,

Hi there. I just wanted to second some of what the others have said. I can NOT say one way or the other about the moaning, but I know when I started having O2 issues at night I would wake up constantly and always felt like I was suffocating in my sleep. I also started having EXTREME anxiety at night and claustrophobia before it was pinpointed that I was having O2 issues.

As for it being suggested I use O2. I brought it up to my doctors. I suggested that I get an overnight oximetry reading first. That came back showing that I definitely did need O2 at night at the very least.

Shortly before I started using O2 at night I began having issues with O2 during exercise. I started feeling extremely fatigued and didn't know why. I KNEW that I shouldn't be getting so exhausted from walking the short distances that were wearing me out. I would walk for 10-15 minutes on the treadmill and would feel like my legs were going to collapse. I just felt SO incredibly fatigued and short of breath.

I started using the O2 on my own when I exercised just to see if I felt better, and amazingly I did NOT get the fatigued feeling in my legs as I had gotten without the O2.

I started talking to my doc about the fatigue and he suggested I use the O2 whenever I felt air hungry or overly fatigued and I basically started using O2 almost all the time at that point. When I went through the transplant evaluation they did a right heart catheterization and found that I had slight/mild pulmonary hypertension. When I talked to the transplant doc about it he said that the pulmonary hypertension was most likely caused by lack of O2 and that I needed to use O2 fulltime to prevent that from getting any worse. Pulmonary Hypertension can cause the extreme fatigue according to what my doc told me, and can also cause more involved heart issues.

If your doc isn't bringing up O2 to you then I would suggest that you maybe ask him/her about it. It won't hurt anything to at least have an oximetry reading done. It will help you to KNOW if there is an O2 problem or not.

Take Care and Best Wishes,
Lindsey

 

[littledebbie]

Okay I'm going to be a voice of dissention here on this. I know I maybe entirely medically wrong blah blah blah blah I'm just speaking from personal experience. My FEV is 17% my pulse ox dances at around 90-92 and while I have tried oxygen...I took myself off of it. I was supposed to start using it at night but it annoyed me, I felt it disrupted my sleep more than helped and when I took it off to start my day I noticed that all day I felt even more short of breathe than I had before starting the O2.

I felt that my body was starting to relax and rely on the O2 and unless I was ready to be on it permanently I shouldn't lean on it yet.

So I don't know....I think speaking form my experience I would say talk to your doc. do the night test etc. Maybe try it for a while but I would try to be conciously evaluating how you body adjusts when you try to stop it too, unless your ready to be on it full time? I don't know...just some food for thought from a different perspective <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[littledebbie]

Okay I'm going to be a voice of dissention here on this. I know I maybe entirely medically wrong blah blah blah blah I'm just speaking from personal experience. My FEV is 17% my pulse ox dances at around 90-92 and while I have tried oxygen...I took myself off of it. I was supposed to start using it at night but it annoyed me, I felt it disrupted my sleep more than helped and when I took it off to start my day I noticed that all day I felt even more short of breathe than I had before starting the O2.

I felt that my body was starting to relax and rely on the O2 and unless I was ready to be on it permanently I shouldn't lean on it yet.

So I don't know....I think speaking form my experience I would say talk to your doc. do the night test etc. Maybe try it for a while but I would try to be conciously evaluating how you body adjusts when you try to stop it too, unless your ready to be on it full time? I don't know...just some food for thought from a different perspective <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[littledebbie]

Okay I'm going to be a voice of dissention here on this. I know I maybe entirely medically wrong blah blah blah blah I'm just speaking from personal experience. My FEV is 17% my pulse ox dances at around 90-92 and while I have tried oxygen...I took myself off of it. I was supposed to start using it at night but it annoyed me, I felt it disrupted my sleep more than helped and when I took it off to start my day I noticed that all day I felt even more short of breathe than I had before starting the O2.

I felt that my body was starting to relax and rely on the O2 and unless I was ready to be on it permanently I shouldn't lean on it yet.

So I don't know....I think speaking form my experience I would say talk to your doc. do the night test etc. Maybe try it for a while but I would try to be conciously evaluating how you body adjusts when you try to stop it too, unless your ready to be on it full time? I don't know...just some food for thought from a different perspective <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[LisaV]

In my experience going on oxygen can be a really life-enhancing choice. Like you, my late husband fought against going on it because he was afraid he wouldn't get off. At first he used it a couple of times after bad infections for a couple months but was able to get off.

Eventually it was fulltime. He used a small oxymeter to tell when he needed it. He first used it at night because hisO2 levels were low when he woke up. Then they found his levels dropped below 90 when he did any activity so he started using it for activities. Then it dropped when he just walked and he used it almost every time he got up from his chair. Then it dropped when he was sitting and he used it all of the time.

Using the O2 did not strengthen his lung function , BUT it did keep him remarkably active which gave him good muscles everywhere else and it kept his heart from overcompensating and gave him good heart function.

Going on O2 is a real nasty psychological challenge. It makes your disability visible for the first time. It marks an official decline in lung function. It can make death seem closer. However, using O2 when you need it actually gives you a longer more active life.

We are all dependent on O2. Using O2 will not make you more dependent. It will just make sure you get the amount that you actually need.

Good site to read about using O2 (with links to rationale) is the Portable Oxygen site at <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> .

Don't wait until you have heart damage before you use O2.

P.S. I have a friend in his 70s with COPD. Before he went on O2 he was hobbling around his house with a walker. Now on O2 he is bike riding with his wife (up and down hills) with his portable O2 in the basket. You decide which is better quality of life

 

[LisaV]

In my experience going on oxygen can be a really life-enhancing choice. Like you, my late husband fought against going on it because he was afraid he wouldn't get off. At first he used it a couple of times after bad infections for a couple months but was able to get off.

Eventually it was fulltime. He used a small oxymeter to tell when he needed it. He first used it at night because hisO2 levels were low when he woke up. Then they found his levels dropped below 90 when he did any activity so he started using it for activities. Then it dropped when he just walked and he used it almost every time he got up from his chair. Then it dropped when he was sitting and he used it all of the time.

Using the O2 did not strengthen his lung function , BUT it did keep him remarkably active which gave him good muscles everywhere else and it kept his heart from overcompensating and gave him good heart function.

Going on O2 is a real nasty psychological challenge. It makes your disability visible for the first time. It marks an official decline in lung function. It can make death seem closer. However, using O2 when you need it actually gives you a longer more active life.

We are all dependent on O2. Using O2 will not make you more dependent. It will just make sure you get the amount that you actually need.

Good site to read about using O2 (with links to rationale) is the Portable Oxygen site at <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> .

Don't wait until you have heart damage before you use O2.

P.S. I have a friend in his 70s with COPD. Before he went on O2 he was hobbling around his house with a walker. Now on O2 he is bike riding with his wife (up and down hills) with his portable O2 in the basket. You decide which is better quality of life

 

[LisaV]

In my experience going on oxygen can be a really life-enhancing choice. Like you, my late husband fought against going on it because he was afraid he wouldn't get off. At first he used it a couple of times after bad infections for a couple months but was able to get off.

Eventually it was fulltime. He used a small oxymeter to tell when he needed it. He first used it at night because hisO2 levels were low when he woke up. Then they found his levels dropped below 90 when he did any activity so he started using it for activities. Then it dropped when he just walked and he used it almost every time he got up from his chair. Then it dropped when he was sitting and he used it all of the time.

Using the O2 did not strengthen his lung function , BUT it did keep him remarkably active which gave him good muscles everywhere else and it kept his heart from overcompensating and gave him good heart function.

Going on O2 is a real nasty psychological challenge. It makes your disability visible for the first time. It marks an official decline in lung function. It can make death seem closer. However, using O2 when you need it actually gives you a longer more active life.

We are all dependent on O2. Using O2 will not make you more dependent. It will just make sure you get the amount that you actually need.

Good site to read about using O2 (with links to rationale) is the Portable Oxygen site at <a target=_blank class=ftalternatingbarlinklarge href="http://www.portableoxygen.org/">http://www.portableoxygen.org/</a> .

Don't wait until you have heart damage before you use O2.

P.S. I have a friend in his 70s with COPD. Before he went on O2 he was hobbling around his house with a walker. Now on O2 he is bike riding with his wife (up and down hills) with his portable O2 in the basket. You decide which is better quality of life

 

[Sreh]

Your O2 sats have to drop to 89 or below after exertion(sp) before you doctor can put you on O2. At least that is what they told me when I was put on O2.

 

[Sreh]

Your O2 sats have to drop to 89 or below after exertion(sp) before you doctor can put you on O2. At least that is what they told me when I was put on O2.