Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Joyce, Bruce stated it quite well. I've been told by every doctor and respiratory therapist I've ever asked that over oxygenation is not an issue for me, nor for the vast majority of people with restrictive lung disease. Some, like Amy Dawn obviously have an issue that makes this a problem for her. The best guide we have are our own O2 saturations as measured by our oximeter and our doctors instructions. I'm sitting her at 3 liters per minute right now and my sats are 98. I've never been told that is 'too high'. That's a normal sat for a healthy person. When I get up in a minute to go fix supper, my sats will drop into the mid-low 90's with the movement. If I am on the treadmill, I have to have 12 liters per minute with a venti mask to maintain sats in the mid 90's. Some might think that's excessive but it's what I need to exercise safely and I learned that in rehab. The bottom line is we're different, what works for me, won't work for Amy and vice versa. We all have to find our own way through this maze! Beth in North Carolina Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Tuesday, November 18, 2008 5:10:06 PMSubject: Re: dr today PinkFrom what I've heard, Ginger did have it, but based on extremely highlevels of oxygen. Someone can correct me if I'm wrong, please.I'll try to state this carefully.Under most conditions, over oxygenation is not an issue for those withPF. The key is to use an oximeter, not the shortness of breath you feel.If you are at 92% on 2 liters and 96% on 3, then the three liters isn'tan issue. Thats what people mean when saying there isn't a danger withPF'ers. However, if that same person turned it up to 8 lpm there wouldbe a problem. That would be the equivalent of someone with no diseasewalking around using 5 lpm of oxygen.With COPD, overoxygenation is a significant risk as one may not be ableto diffuse it. The same condition that blocks getting it in blocksgetting it out, the obstruction. With PF we don't have an obstruction,but restriction.As to Amy Dawn I don't know what all the circumstances are and she isjust barely below being overoxygenated.Most of us use our oximeters and stay within reason and don't have otherconditions putting us at risk, such as COPD. Having serious sleep apneaand not being on a CPAP would create some risk of two much oxygen. Theone time we aren't measuring our sats on our own is sleep, so we needperiodic sleep oximeter recordings. One's daytime needs may go up andtheir sleep needs may not. Or the sleep needs may go up faster.So, carbon dioxide build up is not impossible. However, underoxygenationis much more our issue by thousands to one.> >> > HI Everyone: Went to the dr. I guess after 10 years with IPF I> cannot expect much. My carbon dioxide is way too high and I guess I> have been keeping my O2 too high so from what I understand eventuallymy> body is going to have too much carbon diox. and my brain will not know> to breath so I am trying to keep the O2 down. The edema is from the> lungs, heart and all of the above. It is the progression of thedisease> so I guess I will just keep on keeping on.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Pink ... yes, that is what happened to our Ginger. She was so afraid, she kept turning the O2 higher and higher. Went to the big house a couple of times. Her body finally couldn't take the toxicity. Of course there were other things too of course. I sure miss her! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: dr today AmyTwo questions. Are you using an oximeter to determine the oxygenrequirements? Do you have COPD too? I ask the COPD question because thecarbon dioxide problem is normally a COPD issue. To have it strictlyfrom oxygen and PF would require the oxygen turned considerably morethan needed to maintain saturation.>> HI Everyone: Went to the dr. I guess after 10 years with IPF Icannot expect much. My carbon dioxide is way too high and I guess Ihave been keeping my O2 too high so from what I understand eventually mybody is going to have too much carbon diox. and my brain will not knowto breath so I am trying to keep the O2 down. The edema is from thelungs, heart and all of the above. It is the progression of the diseaseso I guess I will just keep on keeping on.> Amy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 MB ... I think concentrating on not going BELOW 90 OR 89 OR 91 is the important thing. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: dr today PinkFrom what I've heard, Ginger did have it, but based on extremely highlevels of oxygen. Someone can correct me if I'm wrong, please.I'll try to state this carefully.Under most conditions, over oxygenation is not an issue for those withPF. The key is to use an oximeter, not the shortness of breath you feel.If you are at 92% on 2 liters and 96% on 3, then the three liters isn'tan issue. Thats what people mean when saying there isn't a danger withPF'ers. However, if that same person turned it up to 8 lpm there wouldbe a problem. That would be the equivalent of someone with no diseasewalking around using 5 lpm of oxygen.With COPD, overoxygenation is a significant risk as one may not be ableto diffuse it. The same condition that blocks getting it in blocksgetting it out, the obstruction. With PF we don't have an obstruction,but restriction.As to Amy Dawn I don't know what all the circumstances are and she isjust barely below being overoxygenated.Most of us use our oximeters and stay within reason and don't have otherconditions putting us at risk, such as COPD. Having serious sleep apneaand not being on a CPAP would create some risk of two much oxygen. Theone time we aren't measuring our sats on our own is sleep, so we needperiodic sleep oximeter recordings. One's daytime needs may go up andtheir sleep needs may not. Or the sleep needs may go up faster.So, carbon dioxide build up is not impossible. However, underoxygenationis much more our issue by thousands to one.> >> > HI Everyone: Went to the dr. I guess after 10 years with IPF I> cannot expect much. My carbon dioxide is way too high and I guess I> have been keeping my O2 too high so from what I understand eventuallymy> body is going to have too much carbon diox. and my brain will not know> to breath so I am trying to keep the O2 down. The edema is from the> lungs, heart and all of the above. It is the progression of thedisease> so I guess I will just keep on keeping on.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Sher, Obviously you are right. The most important thing is keeping our sats above whatever magic number our doctor has given us, whether it's 88, 90 or 92. But since we were talking about "too much oxygen" I was merely sharing my personal experience. I was not telling anyone else what they should do in their own unique circumstances. Beth in North Carolina Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Tuesday, November 18, 2008 6:11:07 PMSubject: Re: Re: dr today MB ... I think concentrating on not going BELOW 90 OR 89 OR 91 is the important thing. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: dr today PinkFrom what I've heard, Ginger did have it, but based on extremely highlevels of oxygen. Someone can correct me if I'm wrong, please.I'll try to state this carefully.Under most conditions, over oxygenation is not an issue for those withPF. The key is to use an oximeter, not the shortness of breath you feel.If you are at 92% on 2 liters and 96% on 3, then the three liters isn'tan issue. Thats what people mean when saying there isn't a danger withPF'ers. However, if that same person turned it up to 8 lpm there wouldbe a problem. That would be the equivalent of someone with no diseasewalking around using 5 lpm of oxygen.With COPD, overoxygenation is a significant risk as one may not be ableto diffuse it. The same condition that blocks getting it in blocksgetting it out, the obstruction. With PF we don't have an obstruction,but restriction.As to Amy Dawn I don't know what all the circumstances are and she isjust barely below being overoxygenated.Most of us use our oximeters and stay within reason and don't have otherconditions putting us at risk, such as COPD. Having serious sleep apneaand not being on a CPAP would create some risk of two much oxygen. Theone time we aren't measuring our sats on our own is sleep, so we needperiodic sleep oximeter recordings. One's daytime needs may go up andtheir sleep needs may not. Or the sleep needs may go up faster.So, carbon dioxide build up is not impossible. However, underoxygenationis much more our issue by thousands to one.> >> > HI Everyone: Went to the dr. I guess after 10 years with IPF I> cannot expect much. My carbon dioxide is way too high and I guess I> have been keeping my O2 too high so from what I understand eventuallymy> body is going to have too much carbon diox. and my brain will not know> to breath so I am trying to keep the O2 down. The edema is from the> lungs, heart and all of the above. It is the progression of thedisease> so I guess I will just keep on keeping on.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Hi Beth: The dr also said that the severity of the disease lung scaring etc the lungs are not expelling the carb.diox. I usually have O2 set between 5-6 which creates 97 98 I just do not know what to do as if I put it on 4 liters I will be at 94 then I sit up in bed and I am at 88. I guess I need to develop a remote control to adjust the O2 LOL Amy To: Breathe-Support Sent: Tuesday, November 18, 2008 6:27:55 PMSubject: Re: Re: dr today Sher, Obviously you are right. The most important thing is keeping our sats above whatever magic number our doctor has given us, whether it's 88, 90 or 92. But since we were talking about "too much oxygen" I was merely sharing my personal experience. I was not telling anyone else what they should do in their own unique circumstances. Beth in North Carolina Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Tuesday, November 18, 2008 6:11:07 PMSubject: Re: Re: dr today MB ... I think concentrating on not going BELOW 90 OR 89 OR 91 is the important thing. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: dr today PinkFrom what I've heard, Ginger did have it, but based on extremely highlevels of oxygen. Someone can correct me if I'm wrong, please.I'll try to state this carefully.Under most conditions, over oxygenation is not an issue for those withPF. The key is to use an oximeter, not the shortness of breath you feel.If you are at 92% on 2 liters and 96% on 3, then the three liters isn'tan issue. Thats what people mean when saying there isn't a danger withPF'ers. However, if that same person turned it up to 8 lpm there wouldbe a problem. That would be the equivalent of someone with no diseasewalking around using 5 lpm of oxygen.With COPD, overoxygenation is a significant risk as one may not be ableto diffuse it. The same condition that blocks getting it in blocksgetting it out, the obstruction. With PF we don't have an obstruction,but restriction.As to Amy Dawn I don't know what all the circumstances are and she isjust barely below being overoxygenated.Most of us use our oximeters and stay within reason and don't have otherconditions putting us at risk, such as COPD. Having serious sleep apneaand not being on a CPAP would create some risk of two much oxygen. Theone time we aren't measuring our sats on our own is sleep, so we needperiodic sleep oximeter recordings. One's daytime needs may go up andtheir sleep needs may not. Or the sleep needs may go up faster.So, carbon dioxide build up is not impossible. However, underoxygenationis much more our issue by thousands to one.> >> > HI Everyone: Went to the dr. I guess after 10 years with IPF I> cannot expect much. My carbon dioxide is way too high and I guess I> have been keeping my O2 too high so from what I understand eventuallymy> body is going to have too much carbon diox. and my brain will not know> to breath so I am trying to keep the O2 down. The edema is from the> lungs, heart and all of the above. It is the progression of thedisease> so I guess I will just keep on keeping on.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Amy, We have all been wishing for a remote control for our concentrators for a long time! Wouldn't that be nice?! Beth in North Carolina Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Tuesday, November 18, 2008 6:31:16 PMSubject: Re: Re: dr today Hi Beth: The dr also said that the severity of the disease lung scaring etc the lungs are not expelling the carb.diox. I usually have O2 set between 5-6 which creates 97 98 I just do not know what to do as if I put it on 4 liters I will be at 94 then I sit up in bed and I am at 88. I guess I need to develop a remote control to adjust the O2 LOL Amy From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, November 18, 2008 6:27:55 PMSubject: Re: Re: dr today Sher, Obviously you are right. The most important thing is keeping our sats above whatever magic number our doctor has given us, whether it's 88, 90 or 92. But since we were talking about "too much oxygen" I was merely sharing my personal experience. I was not telling anyone else what they should do in their own unique circumstances. Beth in North Carolina Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Tuesday, November 18, 2008 6:11:07 PMSubject: Re: Re: dr today MB ... I think concentrating on not going BELOW 90 OR 89 OR 91 is the important thing. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: dr today PinkFrom what I've heard, Ginger did have it, but based on extremely highlevels of oxygen. Someone can correct me if I'm wrong, please.I'll try to state this carefully.Under most conditions, over oxygenation is not an issue for those withPF. The key is to use an oximeter, not the shortness of breath you feel.If you are at 92% on 2 liters and 96% on 3, then the three liters isn'tan issue. Thats what people mean when saying there isn't a danger withPF'ers. However, if that same person turned it up to 8 lpm there wouldbe a problem. That would be the equivalent of someone with no diseasewalking around using 5 lpm of oxygen.With COPD, overoxygenation is a significant risk as one may not be ableto diffuse it. The same condition that blocks getting it in blocksgetting it out, the obstruction. With PF we don't have an obstruction,but restriction.As to Amy Dawn I don't know what all the circumstances are and she isjust barely below being overoxygenated.Most of us use our oximeters and stay within reason and don't have otherconditions putting us at risk, such as COPD. Having serious sleep apneaand not being on a CPAP would create some risk of two much oxygen. Theone time we aren't measuring our sats on our own is sleep, so we needperiodic sleep oximeter recordings. One's daytime needs may go up andtheir sleep needs may not. Or the sleep needs may go up faster.So, carbon dioxide build up is not impossible. However, underoxygenationis much more our issue by thousands to one.> >> > HI Everyone: Went to the dr. I guess after 10 years with IPF I> cannot expect much. My carbon dioxide is way too high and I guess I> have been keeping my O2 too high so from what I understand eventuallymy> body is going to have too much carbon diox. and my brain will not know> to breath so I am trying to keep the O2 down. The edema is from the> lungs, heart and all of the above. It is the progression of thedisease> so I guess I will just keep on keeping on.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Yeah, I talk about me and still get in the middle! lol MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: dr today PinkFrom what I've heard, Ginger did have it, but based on extremely highlevels of oxygen. Someone can correct me if I'm wrong, please.I'll try to state this carefully.Under most conditions, over oxygenation is not an issue for those withPF. The key is to use an oximeter, not the shortness of breath you feel.If you are at 92% on 2 liters and 96% on 3, then the three liters isn'tan issue. Thats what people mean when saying there isn't a danger withPF'ers. However, if that same person turned it up to 8 lpm there wouldbe a problem. That would be the equivalent of someone with no diseasewalking around using 5 lpm of oxygen.With COPD, overoxygenation is a significant risk as one may not be ableto diffuse it. The same condition that blocks getting it in blocksgetting it out, the obstruction. With PF we don't have an obstruction,but restriction.As to Amy Dawn I don't know what all the circumstances are and she isjust barely below being overoxygenated.Most of us use our oximeters and stay within reason and don't have otherconditions putting us at risk, such as COPD. Having serious sleep apneaand not being on a CPAP would create some risk of two much oxygen. Theone time we aren't measuring our sats on our own is sleep, so we needperiodic sleep oximeter recordings. One's daytime needs may go up andtheir sleep needs may not. Or the sleep needs may go up faster.So, carbon dioxide build up is not impossible. However, underoxygenationis much more our issue by thousands to one.> >> > HI Everyone: Went to the dr. I guess after 10 years with IPF I> cannot expect much. My carbon dioxide is way too high and I guess I> have been keeping my O2 too high so from what I understand eventuallymy> body is going to have too much carbon diox. and my brain will not know> to breath so I am trying to keep the O2 down. The edema is from the> lungs, heart and all of the above. It is the progression of thedisease> so I guess I will just keep on keeping on.> > Amy> >> Quote Link to comment Share on other sites More sharing options...
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