Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Good to hear from you. Now , I have a stupid question. (This is reaaaaly dumb) I thought that you had to wait for the doctor to up your oxygen level. Duh The liquid O2 he really likes. It is easy to fill - however it freezes up once it gets filled. This afternoon we were going out to the garden to plant beans (the kids were here to do the tilling and the planting). and we had to blow on the container until it began to thaw out. Then is worked. He sat in the chair and bossed the whole process. He had it on 2 when he was sitting and then 3 when he walked across the yard. It is now 8:45 and it just ran out of O2. It lasts a long time. The big heavy containers lasted a little over an hour. The size of the container is about the size of a 2lb coffee can. His analogy not mine. It is so much easier to carry. He has felt really bad for the last couple of days. Have you made any observations on the humidity and pressure? After we talked to you we began keeping track of both. It is more the humidity than the pressure. The higher the humidity the better. The humidity has been really low the last couple of days. When I read him your post, he said he had never thought about checking the meter against the O2 he is using. Thanks for the suggestion. He was really glad to hear from you. It perked him right up. Just to know he isn't alone, which is what this is all about. We don't come to Springfield for a couple of weeks again. We go to Chicago before we come to Springfield. I'll let you know what we find out. K Il Fay wrote: I have been experiencing fluxuations in my O2 needs also. I have choosen to use my trusty oximeter and concentrator to try and resolve the problem. I adjust the flow by .5 to 1 liter at a time while measuring my blood oxygen level. It is important to keep the oxygen level up in the body as you know to prevent further damage to the old body. The heart rate has an effect also as the faster it beats the lower your blood oxygen level will go since the blood is flowing thru the lungs faster. That is a good reason to monitor the anxiety level. That probably causes me more trouble than anything and I suspect it does Don also. I know this does not help with the problem at hand but I just want you to know that you are not alone in there experiences. Why doesn't Don turn up the O2 when moving around? I have one level when driving in the car - 1.5 to 2 liters, one level when sitting around the house and doing light chores - 3 to 3.5, and one level for climbing stairs - 4.5 liters. Based on the oximeter I have these flows keep my O2 level above 90 most of the time. A little like spreading fertilizer in the field based on the need in the area not a constant for the whole field. Saves and at the same time maximizes return. I would be interested in how Don likes the liquid O2 verses the tank he had when we met. I am looking for a better solution to my problem of needing O2 when I am out and about walking or shopping or whatever. How long does a tank last? How much flow will it provide? How hard is it to refill? Thank you . Fay IPF 06/06 IL Re: Sher/BOA/ lou Hi Sher, Well, he wasn't carrying around "that" big of a bag in my estimation. His problem is that he isn't use to carrying around a purse and anything is too big. lol However, he does like the little liquid O2 container. It is small and he doesn't have to wear it around his shoulder or back. When he mows (could that be increasing his cough?) the thing around the back doesn't work well. However, the liquid O2 doesn't hold O2 over time. It seeps out when he is finished wearing it. Struggling to figure out what works. Last night he was a mess. It was so hard for him to get to bed he was so weak. It scared us to death so I just sat on his bed until he went to sleep talking about our childhoods. Anything to get his mind off what is going on. This morning he is a little better. I kind of think he might be struggling with what lou was struggling with yesterday and I was hoping I might still have the messages in the deleted file, but I don't . His O2 was 90 when he left the bedroom this morning (he had the O2 on) and by the time he was in the kitchen it was 85. I told him about lou and that we might have to consider moving it up a notch. He is suppose to be on 2 to sleep but 3 during exercise. It just always stays on 2 unless he takes a shower. Maybe lou will read this and answer me what she finally did. That is what is so wonderful about this board, there is always someone who has walked down that path. I'm assuming that we will need to call pulmo tomorrow. Maybe the rehab director will be able to shed some light. Does this make sense Sher? K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 I do not think most people would recommend you mess with O2 levels without some type of indicator but the meter is the same thing the RT has to use and it is just logical. Stats go down O2 should go up - in my book. I really do not enjoy depending on doctors so do a lot of self examination and evaluation based on changes I am aware of and so far doctor has not told me not to do that when I tell him what I have done. I base all decisions on things I hear here or read someplace reliable. At best the doctor is just monitoring and trying to make my life comfortable, he cannot cure me and he knows it. I think that is the difference in how you are treated by doctors. Not pleasant to think about but at the same time very logical. I will tell you that most of the time I am cold also. As I tell my friends, cold inside and warm on outside. It just feels like deep down I am cold but my skin does not always feel that way. I think it is lack of O2 circulation. My fp told me losing weight is the bodies way of keeping us going, since there is not enough O2 for large body then cut weight and O2 will cover it better. When you think about it, it makes sense, smaller body for less O2 ability/availability. That is partly why I think the cold is same result. Don is very fortunate to have you to help him and you are doing a wonderful job. Keep up the good work. Fay IPF 06/06 IL Re: Sher/BOA/ lou Hi Sher, Well, he wasn't carrying around "that" big of a bag in my estimation. His problem is that he isn't use to carrying around a purse and anything is too big. lol However, he does like the little liquid O2 container. It is small and he doesn't have to wear it around his shoulder or back. When he mows (could that be increasing his cough?) the thing around the back doesn't work well. However, the liquid O2 doesn't hold O2 over time. It seeps out when he is finished wearing it. Struggling to figure out what works. Last night he was a mess. It was so hard for him to get to bed he was so weak. It scared us to death so I just sat on his bed until he went to sleep talking about our childhoods. Anything to get his mind off what is going on. This morning he is a little better. I kind of think he might be struggling with what lou was struggling with yesterday and I was hoping I might still have the messages in the deleted file, but I don't . His O2 was 90 when he left the bedroom this morning (he had the O2 on) and by the time he was in the kitchen it was 85. I told him about lou and that we might have to consider moving it up a notch. He is suppose to be on 2 to sleep but 3 during exercise. It just always stays on 2 unless he takes a shower. Maybe lou will read this and answer me what she finally did. That is what is so wonderful about this board, there is always someone who has walked down that path. I'm assuming that we will need to call pulmo tomorrow. Maybe the rehab director will be able to shed some light. Does this make sense Sher? K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Just tell Don it is a little like raising pigs or calves. Do you call the vet everytime something happens or you think something needs to be done. I bet he did not, just used his experience. Now he just needs to profect a little difference experience. LOL I bet he can relate to that!! Fay Re: Sher/BOA/ lou Hi Sher, Well, he wasn't carrying around "that" big of a bag in my estimation. His problem is that he isn't use to carrying around a purse and anything is too big. lol However, he does like the little liquid O2 container. It is small and he doesn't have to wear it around his shoulder or back. When he mows (could that be increasing his cough?) the thing around the back doesn't work well. However, the liquid O2 doesn't hold O2 over time. It seeps out when he is finished wearing it. Struggling to figure out what works. Last night he was a mess. It was so hard for him to get to bed he was so weak. It scared us to death so I just sat on his bed until he went to sleep talking about our childhoods. Anything to get his mind off what is going on. This morning he is a little better. I kind of think he might be struggling with what lou was struggling with yesterday and I was hoping I might still have the messages in the deleted file, but I don't . His O2 was 90 when he left the bedroom this morning (he had the O2 on) and by the time he was in the kitchen it was 85. I told him about lou and that we might have to consider moving it up a notch. He is suppose to be on 2 to sleep but 3 during exercise. It just always stays on 2 unless he takes a shower. Maybe lou will read this and answer me what she finally did. That is what is so wonderful about this board, there is always someone who has walked down that path. I'm assuming that we will need to call pulmo tomorrow. Maybe the rehab director will be able to shed some light. Does this make sense Sher? K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Doctor attitudes vary but my doctor calls any doctor who doesn't want you using an oximeter and adjusting based on it " very proprietary. " In fact, every pulmonologist I have seen (4 in total and all for different reasons, so not changing, just additional) agrees that there is no way sitting in their office and seeing me periodically they can know what I need. They depend on me to detect changes and me to update them. Then when they do PFT's they really just confirm what is already known by the Sats and oxygen requirement. > > > I have been experiencing fluxuations in my O2 needs also. I have choosen to use my trusty oximeter and concentrator to try and resolve the problem. I adjust the flow by .5 to 1 liter at a time while measuring my blood oxygen level. It is important to keep the oxygen level up in the body as you know to prevent further damage to the old body. The heart rate has an effect also as the faster it beats the lower your blood oxygen level will go since the blood is flowing thru the lungs faster. That is a good reason to monitor the anxiety level. That probably causes me more trouble than anything and I suspect it does Don also. > > I know this does not help with the problem at hand but I just want you to know that you are not alone in there experiences. Why doesn't Don turn up the O2 when moving around? I have one level when driving in the car - 1.5 to 2 liters, one level when sitting around the house and doing light chores - 3 to 3.5, and one level for climbing stairs - 4.5 liters. Based on the oximeter I have these flows keep my O2 level above 90 most of the time. A little like spreading fertilizer in the field based on the need in the area not a constant for the whole field. Saves and at the same time maximizes return. > > I would be interested in how Don likes the liquid O2 verses the tank he had when we met. I am looking for a better solution to my problem of needing O2 when I am out and about walking or shopping or whatever. How long does a tank last? How much flow will it provide? How hard is it to refill? > > Thank you . > > Fay > IPF 06/06 IL > > > > Re: Sher/BOA/ lou > > > Hi Sher, > Well, he wasn't carrying around " that " big of a bag in my estimation. His problem is that he isn't use to carrying around a purse and anything is too big. lol However, he does like the little liquid O2 container. It is small and he doesn't have to wear it around his shoulder or back. When he mows (could that be increasing his cough?) the thing around the back doesn't work well. However, the liquid O2 doesn't hold O2 over time. It seeps out when he is finished wearing it. Struggling to figure out what works. > Last night he was a mess. It was so hard for him to get to bed he was so weak. It scared us to death so I just sat on his bed until he went to sleep talking about our childhoods. Anything to get his mind off what is going on. This morning he is a little better. > I kind of think he might be struggling with what lou was struggling with yesterday and I was hoping I might still have the messages in the deleted file, but I don't . His O2 was 90 when he left the bedroom this morning (he had the O2 on) and by the time he was in the kitchen it was 85. I told him about lou and that we might have to consider moving it up a notch. He is suppose to be on 2 to sleep but 3 during exercise. It just always stays on 2 unless he takes a shower. Maybe lou will read this and answer me what she finally did. > That is what is so wonderful about this board, there is always someone who has walked down that path. I'm assuming that we will need to call pulmo tomorrow. Maybe the rehab director will be able to shed some light. > > Does this make sense Sher? > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > ________________________________ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > ________________________________ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > ________________________________ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > ________________________________________________________________________\ ____________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
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