Guest guest Posted August 30, 2009 Report Share Posted August 30, 2009 Dorothy, I'm glad you are learning to use your oxygen. I have to encourage you strongly to use your oxygen. I am still baffled by the 17 hour instruction. If your oxygen saturations are falling as low as 75 to 80 it seems likely to me that you need the oxygen most if not all the time. I do understand that you don't like it, it's inconvenient and makes it more complicated to do things that should be simple and easy. But after three years of being on oxygen 24/7 what I've learned is that the oxygen actually makes it possible for me to do things that I could not do without it. Without the oxygen I would not be able to walk my dog, do my own laundry, go to the grocery store, go to church, play with my nieces and nephews and other things to numerous to count. My sats drop to levels similar to yours very quickly without oxygen. I become short of breath, I cough and I get light headed. When you add that to the fact that when our saturations get that low our bodies are actually sustaining damage, cells are dying. Brain cells, heart cells, liver cells, kidney cells. All of our organ systems are damaged by chronically low oxygen. Not to mention we're increasing our chances of developing pulmonary hypertension and right sided heart failure. Honestly Dorothy resisting the oxygen is just not worth the price you'll have to pay in the long run. You will live longer if you use it and look after yourself carefully. An oximeter is an instrument that measures the level of oxygen in your blood. Many of us who belong to this group own one to monitor our oxygen saturations. They are relatively inexpensive and are invaluable in keeping track of whether we are getting adequate oxygen. Here is a website that sells one for $65 that is FDA approved. http://www.portablenebs.com/oximeters.htm I'm glad you are here. Please continue to read and ask questions. Don't funny about asking. There is a huge learning curve with all this. I know it can be overwhelming. Just take it one little piece at a time. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, August 30, 2009 8:46:43 PMSubject: Re: Re: flying My Dr. said that i should use my O2 at least 17 hours..thats what he told me. Granted i'm not the best patient. I do fight what i don't want. AT first is was my Heart Doc that suggested my Lung Doc write a prescrip for my 02 finally my PC ordered it. My Lund Doc said to put it from 2-3. no i have never had a 6 minute walk..i dont think i own an oximeter..is that the one that i sleep with? I did have a test done aroun 3 weeks ago & it showed that i went down at times to even 75% but stayed right around 80%. i'm just trying to breath & live...thank u for your prayers..and thank you for this group!! i'm super new to all this. From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 30, 2009, 6:40 AM Dorothy, You're welcome! I'm very happy to be of any help that I can. I'm curious about a couple of things and I wonder if you could clarify....I' ve never heard of a doctor writing an oxygen prescription for "17 hours a day/night on 2". Have you had a 6 minute walk? What do your O2 saturations do when you exert yourself? Do you own an oximeter? The single most important thing to do is keep your sats above 90. I'm not sure what kind of throat condition you are referring to but I hope it doesn't keep you from using the oxygen if you need it. Please be assured that you are in my thoughts and prayers. Look after yourself! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Dorothy Delarosa <ddmhogc (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, August 29, 2009 11:01:07 PMSubject: Re: Re: flying Hi, thank you Beth, yes i am new..I feel the same way about flying & that's why i had completely decided NOT to fly. Last week was my first trip anywhere outside of San ...to Baton Rouge, La..taking my nephew to LSU. It was wonderful & i didn't get as tired as i thought i would. My last flying trip to Bogota, Co almost killed me. It was my first experience with severe tightness of chest & shortness of breath...aweful! ! But i survived & continue to live! I am so thankful for this support group. There is currently not one in SA so I'm seriously considering starting one here. Just reading your blogs has already encouraged & helped me. Thank You! From: brucemoreland <brucemoreland@ gmail.com>Subject: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Friday, August 28, 2009, 7:36 PM Are you on oxygen? What is your situation. Anything is possible butthere are issues to address. You can get oxygen from the airline or usea Portable Oxygen Concentrator on the plane. However, you will requiremore oxygen flying than you do on the ground and more in ColoradoSprings than in San . So it would involve many precautionarymeasures in that regard.>> Do any of you with PF fly? I live in San , Texas & my friendlives in Colorado Springs, Co...she wants me to visit but i'm just notsure how i will do...not even if if drive because of the altitude...Cananyone help?> Quote Link to comment Share on other sites More sharing options...
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