Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Amy You should talk to your pulmonologist. However, if this nurse and respiratory therapist aren't part of the pulmonologist's office, they are very likely use to COPD and not very use to PF. For COPD their statement may make sense. For PF it is in conflict with what the rest of us have been told. The reason you'd have to adjust is that there is no way a doctor sitting in an office could know what you need under different conditions. With COPD there is danger of two much oxygen and thats what many therapists are use to. > > Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm depending upon rest etc. I do admit I wear the pulse ox a lot and adjust accordingly Now the nurse and resp therp tell me I should never turn up the O2 if I am having trouble rest purse lip etc. How does most everyone handle there O2? If I drop to 78 and I just suppose to wait or turn it up? > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Amy, Bruce's advice is right on target. Discuss this with your pulmonologist because it's likely the nurse and RT are using an obstructive lung disease protocol when telling you what to do. Ask your pulmo what he wants you to do if your sats drop into the 70's when walking around your house. I have been using the same flow for over two years now 2-3 at rest (2 when sleeping) and 4-5 when active. If I have an episode where my sats drop, I turn it up. Low O2 sats are dangerous and it's not always practical to sit down and rest, like in the middle of Target. Lower sats are far more dangerous for us than turning it up temporarily. Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive O2 Question Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm depending upon rest etc. I do admit I wear the pulse ox a lot and adjust accordingly Now the nurse and resp therp tell me I should never turn up the O2 if I am having trouble rest purse lip etc. How does most everyone handle there O2? If I drop to 78 and I just suppose to wait or turn it up? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Peggy Loading the dishwasher or cleaning the stove top are no longer " simple things " for us. Laundry is the worst one for me. Now overall physical condition i'm sure plays a role as the PF prevents us from doing what we need to be more in shape. However, another thing that happens and my pulmonologist pointed out is that when we strain (for me its bending or lifting anything) we tend to hold our breath. I hadn't ever realized it but I know I do. I'm sure MB can shed more light on exactly what you're experiencing plus you need to discuss with your doctor. > > > > Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm > depending upon rest etc. I do admit I wear the pulse ox a lot and adjust > accordingly Now the nurse and resp therp tell me I should never turn up > the O2 if I am having trouble rest purse lip etc. How does most > everyone handle there O2? If I drop to 78 and I just suppose to wait or > turn it up? > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Amy Dawn, Turn it up!!! The nurse and resp therapist obviously do not know the difference between obstructive lung disease ( Asthma, COPD etc) and the restrictive lung diseases that make up the 200 or so types of PF! We really cannot get too much O2 if we move it up slightly as needed for comfort. No..do not just sit there and wait!!!! That waiting at low saturation levels can injure your other organs ( heart, liver, and brain) Call your pulmonologists and talk to them. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Amy Dawn wrote: Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm depending upon rest etc. I do admit I wear the pulse ox a lot and adjust accordingly Now the nurse and resp therp tell me I should never turn up the O2 if I am having trouble rest purse lip etc. How does most everyone handle there O2? If I drop to 78 and I just suppose to wait or turn it up? Amy No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.0/1601 - Release Date: 8/8/2008 9:02 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Amy, Because Pulmonary Fibrosis is an orphan disease, because there is so little known about it even though it is a killer of more people than breast cancer and because our medical community choose not to educate themselves to it, you are going to receive advise like this. These people are trained to deal with COPD. Not the same animal at all. I have nearly been killed from lack of 02 in the hospital by these uninformed medicos. Our disease is restrictive. Pursed lip breathing is not for me. I nearly faint when I try it. When my 02 drops I have to take quick short breaths and do open mouth breathing. It helps to sit in a slump. Crank that 02 up. When your oxygen drops, it comes up so much faster with increased oxygen. Then slowly turn it back to where you are comfortable. I know and you know when you are in trouble. Your heart beats faster and you feel light headed. I think if your stats are dropping like that, keeping your oximeter close is a plus. I know exactly when I am going to need more 02, just by living in my skin from day to day. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm depending upon rest etc. I do admit I wear the pulse ox a lot and adjust accordingly Now the nurse and resp therp tell me I should never turn up the O2 if I am having trouble rest purse lip etc. How does most everyone handle there O2? If I drop to 78 and I just suppose to wait or turn it up?> Amy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Hi guys, My legs are so weak. I got new reclining sofa and chair. When you want to get up, you are supposed to push the foot down to the floor with your feet. Well, needless to say, we have a problem here. A REAL PROBLEM. Remember the news stories where they find a dead body just sitting in a chair. Some of those were probably attibutable to furniture such as this! I picked out the last furniture so that it fit me. This time, I let my husband choose. My feet don't touch the floor when I scoot back. I am trying not to complain, although everybody in the family hated my furniture choice. But, I need to be able to get off of it. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> >> > Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm> depending upon rest etc. I do admit I wear the pulse ox a lot and adjust> accordingly Now the nurse and resp therp tell me I should never turn up> the O2 if I am having trouble rest purse lip etc. How does most> everyone handle there O2? If I drop to 78 and I just suppose to wait or> turn it up?> > Amy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Joyce Obviously the best but expensive choice would be a chair just for you that would raise and assist you in getting out. Barring that there are devices that can be used on or under the seats of sofas and chairs. Its not as nice as the automatic chair but still might be of great use to you. Your problem is quite common. I can't tell you how many times I've been asked recently: 1-Can you get out of the floor without using your hands, 2-Can you get out of a bathtub without using your hands, 3-Can you get out of a chair or off the sofa without using your hands, 4-Can you get off the toilet without using your hands. Those are the favorite questions of rheumatologists I believe. Well, at this point I can do 1 of those (toilet) and the chair or sofa depending on what chair or sofa. Can't remember ever being able to do the floor one and last time I tried a normal size bath tub (not garden) I ended up in physical therapy. > > > > > > Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm > > depending upon rest etc. I do admit I wear the pulse ox a lot and > adjust > > accordingly Now the nurse and resp therp tell me I should never turn > up > > the O2 if I am having trouble rest purse lip etc. How does most > > everyone handle there O2? If I drop to 78 and I just suppose to wait > or > > turn it up? > > > Amy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Peggy/Sher On those tasks that do as you described loading dishwasher to be or cleaning countertops or the stove, I might also suggest breaking them down into smaller pieces if you insist on doing them. Maybe you have to load a few dishes and break, load a few more and break, etc. In just transferring clothes from the washer to the dryer I have to do that. I cannot comfortably do a full washer load at once. So, I'll do a handful and stand there still doing nothing and staring into space for a minute and then do another handful. Also, who knows where any of us would be right now even without this disease. I know I've not felt as good the last couple of weeks but I don't have any idea how much is PF or how much is autoimmune or how much is something else wrong with me or how much is not exercising enough or how much is overdoing it one day or how much is this 100+ degree weather or how much is not being out as much because of the 100+ degree weather or how much is needing to lose a few pounds or how much is just being older. All, I do know is to do the best I can, get to the doctor for anything abnormal, and accept that I have some limitations. I was with friends last Wednesday evening and I got tired about 9:30 and still had an hour drive home so I politely left rather than run an errand with one and then perhaps played a game or something. I had just had too long a day as I'd had a doctor's appointment at 2, haircut after and then headed up to see them. In retrospect I know thats too much for me at this point. Next time I go visit them I will be home resting during the afternoon and more ready. > > > > Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm > depending upon rest etc. I do admit I wear the pulse ox a lot and adjust > accordingly Now the nurse and resp therp tell me I should never turn up > the O2 if I am having trouble rest purse lip etc. How does most > everyone handle there O2? If I drop to 78 and I just suppose to wait or > turn it up? > > Amy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Peggy, Me too, no church. I could have gone but could not make myself get ready. I am beginning to think those things that the women in some of the middle eastern countries wear are not a bad idea. Just think.....get up and go. You wouldn't even have to brush your teeth. Eyes are the only thing that show and I have really big sunglasses. Now, I feel like it has not been Sunday at all. I only got out of the house once last week. It is so difficult that I would rather stay home. That new chair will be broken in really soon. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > >> > > Hi Everyone: Please help I need feedback. I am usually at 4 - 6 lpm> > depending upon rest etc. I do admit I wear the pulse ox a lot and > adjust> > accordingly Now the nurse and resp therp tell me I should never > turn up> > the O2 if I am having trouble rest purse lip etc. How does most> > everyone handle there O2? If I drop to 78 and I just suppose to > wait or> > turn it up?> > > Amy> > >> >> Quote Link to comment Share on other sites More sharing options...
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