Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 Are you on oxygen? What is your situation. Anything is possible but there are issues to address. You can get oxygen from the airline or use a Portable Oxygen Concentrator on the plane. However, you will require more oxygen flying than you do on the ground and more in Colorado Springs than in San . So it would involve many precautionary measures in that regard. > > Do any of you with PF fly? I live in San , Texas & my friend lives in Colorado Springs, Co...she wants me to visit but i'm just not sure how i will do...not even if if drive because of the altitude...Can anyone help? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 yes, the doctor has me on it @ least 17 hours and i haven't flown since my horrible experience going to Colombia two years ago...i'm just not sure if i'm up to it and i'm not sure of how i will be in colorado.. Subject: Re: flyingTo: Breathe-Support Date: 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...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 He has you on it at least 17 hours? Can you please explain. I don't know about your Colombia experience but I know of many who have flown to Bogota and ended up in the hospital before morning. What flow do you need under various circumstances? What has your doctor said regarding your trip thoughts? In Colorado you're likely to need a couple of additional liters, although perhaps only one. You may still have some difficulty adjusting. At least the first day should be planned very light. > > > > Do any of you with PF fly? I live in San , Texas & my friend > lives in Colorado Springs, Co...she wants me to visit but i'm just not > sure how i will do...not even if if drive because of the altitude...Can > anyone help? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Dorothy, Hi and I think I owe you a welcome. I don't remember seeing you post before so if I've never welcomed you...I'm glad you are here. Anytime we move from altitude to a significantly higher one our O2 needs are going to increase. My son lives in Boone, NC in the Blue Ridge mountains at a bit over 3000 feet above sea level. I use more O2 when I visit him than here at home in Durham NC. My concentrator gets set between 4 and 5 when I'm up there while at home it's set at 3. I watch my sats more closely and drink lots of fluids to help my body adjust to the increases altitude. Flying is something I have chosen not to do since I was diagnosed. Something to keep in mind, commercial aircraft are pressurized to an altitude of 8000 feet above sea level. That's the equivalent of sitting on top of a 8000 foot high mountain. That fact alone makes me very leery of flying. But that's me and my oxygen needs. It doesn't necessarly have anything at all to do with you. There are many folks on the board who have flown and make it work for them and have no problems. What you need to do if you choose to fly, be prepared. Call the airline involved and find out what their rules are. You must I believe get them a copy of your prescription and probably a note from your doctor clearing you to fly. Requirements vary from airline to airline. Find out if your O2 supplier can loan you or rent you an FAA approved Portable concentrator. If not then you will need to have the airline provide the O2 you will need and they charge $100 per flight segment for that service. Whatever you choose, be sure to be prepared to deal with the airports. If you are having the airline supply your O2, you will need to have someone drop you off and then meet you at your destination with oxygen. Logistically there is alot to think about and arrange. It's just not something I've felt the need to tackle. I will drive all over the place but flying hasn't been a priority for me. The idea is to figure out what you can do safely and comfortably! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, August 28, 2009 9:45:35 PMSubject: Re: Re: flying yes, the doctor has me on it @ least 17 hours and i haven't flown since my horrible experience going to Colombia two years ago...i'm just not sure if i'm up to it and i'm not sure of how i will be in colorado.. 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...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 invite your friend to visit you in san antonio after explaining the oxygen situation Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: flyingTo: Breathe-Support Date: Friday, August 28, 2009, 8:36 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...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 when getting portable o2 concentrator, don't forget about the time spent in the airport before the flight and after the flight going to baggage sometimes the supplier provides batteries for he length of the flight without considering time spent in the airport Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: flyingTo: Breathe-Support Date: Saturday, August 29, 2009, 2:02 AM Dorothy, Hi and I think I owe you a welcome. I don't remember seeing you post before so if I've never welcomed you...I'm glad you are here. Anytime we move from altitude to a significantly higher one our O2 needs are going to increase. My son lives in Boone, NC in the Blue Ridge mountains at a bit over 3000 feet above sea level. I use more O2 when I visit him than here at home in Durham NC. My concentrator gets set between 4 and 5 when I'm up there while at home it's set at 3. I watch my sats more closely and drink lots of fluids to help my body adjust to the increases altitude. Flying is something I have chosen not to do since I was diagnosed. Something to keep in mind, commercial aircraft are pressurized to an altitude of 8000 feet above sea level. That's the equivalent of sitting on top of a 8000 foot high mountain. That fact alone makes me very leery of flying. But that's me and my oxygen needs. It doesn't necessarly have anything at all to do with you. There are many folks on the board who have flown and make it work for them and have no problems. What you need to do if you choose to fly, be prepared. Call the airline involved and find out what their rules are. You must I believe get them a copy of your prescription and probably a note from your doctor clearing you to fly. Requirements vary from airline to airline. Find out if your O2 supplier can loan you or rent you an FAA approved Portable concentrator. If not then you will need to have the airline provide the O2 you will need and they charge $100 per flight segment for that service. Whatever you choose, be sure to be prepared to deal with the airports. If you are having the airline supply your O2, you will need to have someone drop you off and then meet you at your destination with oxygen. Logistically there is alot to think about and arrange. It's just not something I've felt the need to tackle. I will drive all over the place but flying hasn't been a priority for me. The idea is to figure out what you can do safely and comfortably! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Dorothy Delarosa <ddmhogc (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, August 28, 2009 9:45:35 PMSubject: Re: Re: flying yes, the doctor has me on it @ least 17 hours and i haven't flown since my horrible experience going to Colombia two years ago...i'm just not sure if i'm up to it and i'm not sure of how i will be in colorado.. 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...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Yes, Bogota Columbia..i thought i was going to die..it was horrible..i didn't know i had PF-UIP, i really thought i was going to die..anyway..He suggests 17 hrs a day/night on 2 or as confortable as i feel because of my throat..i haven't asked him about traveling..but i will. Honestly, i had marked off flying completely, but you guys have given me such hope!! I'm still not sure how i will feel, but i will ask the dr..i see him in 2 weeks. Subject: Re: flyingTo: Breathe-Support Date: Friday, August 28, 2009, 9:52 PM He has you on it at least 17 hours? Can you please explain. I don't knowabout your Colombia experience but I know of many who have flown toBogota and ended up in the hospital before morning. What flow do youneed under various circumstances? What has your doctor said regardingyour trip thoughts? In Colorado you're likely to need a couple ofadditional liters, although perhaps only one. You may still have somedifficulty adjusting. At least the first day should be planned verylight.> >> > Do any of you with PF fly? I live in San , Texas & my friend> lives in Colorado Springs, Co...she wants me to visit but i'm just not> sure how i will do...not even if if drive because of thealtitude...Can> anyone help?> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 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...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Exactly what i told her...she did visit me last month...and has even offered to pay for my flight..but i don't think she understands the severity of the situation...it's hard for anyone to understand how we feel...i just don't want to do anything that will not help my condition..as many of you know. From: brucemoreland <brucemoreland@ gmail.com>Subject: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Friday, August 28, 2009, 8:36 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...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Dorothy I've never heard of a suggestion of 17 hours a day or night for PF. What do your sats indicate? I mean you need to maintain over 90% (some say 88, some 92) and that isn't certain times. How are you suppose to decide which hours? As comfortable as you feel because of your throat? I'm not connecting. Where does this doctor practice? Not as an ILD center I wouldn't think. I'm just very confused by your oxygen prescription. > > > > > > Do any of you with PF fly? I live in San , Texas & my friend > > lives in Colorado Springs, Co...she wants me to visit but i'm just not > > sure how i will do...not even if if drive because of the > altitude...Can > > anyone help? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2009 Report Share Posted August 30, 2009 he told me to use it at my descretion...night or day. He wants me to use it when I watch tv & he'd really like me to use it at night as well. I'm not the best patient. I also have the portable tanks but i cannot carry it around because its too heavy for me. My last testing all night showed that i go down to 80% @ night & when i move around i can go to as low as 75%..it just depends.. My doc is the Head Pulmonary Specialist at one of our main hospitals in SA-over 25 years in the business Subject: Re: flyingTo: Breathe-Support Date: Saturday, August 29, 2009, 11:12 PM DorothyI've never heard of a suggestion of 17 hours a day or night for PF. Whatdo your sats indicate? I mean you need to maintain over 90% (some say88, some 92) and that isn't certain times. How are you suppose to decidewhich hours? As comfortable as you feel because of your throat? I'm notconnecting. Where does this doctor practice? Not as an ILD center Iwouldn't think. I'm just very confused by your oxygen prescription.> > >> > > Do any of you with PF fly? I live in San , Texas & myfriend> > lives in Colorado Springs, Co...she wants me to visit but i'm justnot> > sure how i will do...not even if if drive because of the> altitude...Can> > anyone help?> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2009 Report Share Posted August 30, 2009 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. Subject: Re: Re: flyingTo: Breathe-Support Date: 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...
Guest guest Posted August 30, 2009 Report Share Posted August 30, 2009 Dorothy Being head of pulmonology doesn't mean he knows anything about PF, to put it bluntly. Most pulmonologists see very few PF patients. Now, as to you not being the best patient, then maybe he just gave up. The reality is that if you go to 80% and 75% at night you should never sleep without oxygen. Furthermore there are no circumstances under which you would use it sitting watching tv and then not use it moving around. As to the reason for too heavy, you need to find tanks you can handle. So basically I can't be certain how much of the issue is him and how much is you, but I can tell you definitively that if you have PF you're taking a very dangerous path that could well lead to PH. If so, you'll wish you just had PF. I know no way to warn you adequately without being blunt. > > > > > > > > Do any of you with PF fly? I live in San , Texas & my > friend > > > lives in Colorado Springs, Co...she wants me to visit but i'm just > not > > > sure how i will do...not even if if drive because of the > > altitude...Can > > > anyone help? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2009 Report Share Posted August 30, 2009 Dorothy How were you diagnosed? How do you even know what disease you have? An oximeter is the instrument like the doctor should use in his office to measure your saturation. They are available for as little as $65. No PF patient should be without one. You keep repeating that you're not the best patient and fight what you don't want. I'm sorry but then why go to the doctor or come here? I do believe in informed decisions but it sounds like you're just making the decision not to use oxygen when you need it. You know you need it for sleep. You know you do for activity. Oxygen is the most essential tool there is for PF. If you're not going to use it then I really don't know any information or advice we or a doctor could give that would benefit you. Everything else is debatable. Maintaining saturation levels is essential to protecting your heart as well as to just your daily health. I also strongly encourage you to get to a teaching hospital with an Interstitial Lung Disease department (not just a regular lung practice) such as one of the IPF Centers of Excellence. The nearest to SA in in Dallas. Get a complete workup and information and a good solid diagnosis with recommendations. I'm frightened and saddened greatly as I imagine you with your oxygen dropping to such levels. If you have PF and if its dropping to 75% at night, I don't even want to imagine how low it is going when you exert yourself during the day. > > > > Do any of you with PF fly? I live in San , Texas & my friend > lives in Colorado Springs, Co...she wants me to visit but i'm just not > sure how i will do...not even if if drive because of the altitude...Can > anyone help? > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.