Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 Just spoken to my sister who is a cart tart, the new procedures in the UK mean that everyone is being 'patted down' at the point where you walk through the metal detectors. No hand baggage is being allowed - she hasn't flown today so she is not sure how this will work for essentials (imagine transatlantic flights with no nappies or essential medication) but thinks that passengers are being given clear plastic carriers for these essentials and that all bags/passengers are being searched again immediately prior to boarding the plane. She has also decided that all aircrew should be issued with cyanide capsules so that in the event of an incident the hijackers can be poisoned by the crew - but she changed her mind on that one because she thought it might be too tempting to use on some of the passengers who get obnoxious after a few to many drinks! Not sure how long these measures will be in place - I can't imagine flying without a stack of books for me to read if I'm flying alone, on the other hand when I fly with the children I always weight myself down with a load of toys for them and they have *never* taken them out of the bag (even on our flights to Oz) there are far more interesting things to do on a plane than play with toys apparently! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2001 Report Share Posted September 13, 2001 >>No hand baggage is being allowed - she hasn't flown today so she is >>not sure how this will work for essentials. It seems really difficult though. When I flew back to England last month I had a silver cake slice and cheese slice set in my hand luggage - stupid perhaps, but I needed a wedding present and this set was purchased in the tax free shop in the airport (I had already checked in so couldn't go in my suitcase)! They saw it on their screens, but when they realised what it was they said 'fine'. So everything's got to be taken out of the airport shops too. And on the flights only food that can be eaten by your fingers - no knives or forks (attacks with plastic forks in someone's eye has worked before). And I imagine essentials cannot include razors anymore... but they are SO tiny... you wouldn't detect them even if you were handsearched would you? What about all the stuff already in the plane - belts for strangling people? trolleys for crushing people? Very frightening the whole thing. I imagine the pilots will have to lock themselves in the cockpit at all times and be instructed not to open the door even if people are being killed onboard hte plane. What a crazy new world. Karina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2009 Report Share Posted August 30, 2009 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 To: Breathe-Support Sent: 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 just keep telling her that it's not the money -- it's the oxygen and breathing send her some literature 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, 11:08 PM 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 30, 2009 Report Share Posted August 30, 2009 Dorothy I realize my posts to you may be a bit harsh and they aren't intended to discourage you from asking us questions. They however come from a very genuine fear for your well being. I've suffered here as patients got PH from lack of oxygen and we watched the pain and suffering. I've also watched as the only other San member I am aware of deteriorated rapidly and seemed to get at best some questionable advice and hope depending completely on a clinical trial during which he had to withdraw due to his plight. We deal with a deadly disease but I'll always feel his situation was faster and harsher than it had to be and I see the pain of his family. Maybe it couldn't have been better, but when I see oxygen levels not just below 90% but below 80% and don't feel you're being adequately warned as to the danger I get extremely concerned. I also know that your quality of life is being compromised today more than it has to be based on those saturation levels. Your sleep is compromised, you have to be suffering extra fatigue. Yes, oxygen can be a pain. But, without it I know my life the past two years would have been entirely different and far less enjoyable. We're protective of our members, old or new, when concerned as to their medical treatment. When I talk about a doctor not pushing his hardest either because you're a non-complying patient sometimes, then I'm not justifying that on their part, just simply stating some doctors act that way, consciously or not. I also don't truly believe you're just failing to use oxygen at night or upon exertion out of stubbornness or resistance, but I believe you haven't been adequately informed or warned. I also don't think you've probably been educated as to all the choices of portable equipment. It starts at 3 pounds or so. My hopes are you can get the information you need from true experts on the disease you have and live the best life possible for as long as possible. > > > > > > 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 I was diagnosed PF-UIP with a lung biopsy of which i had 4 surgeries in oct '08--everything that could go wrong did. I had many complications of which my lung collapsed twice, my tubes got infected & they found a leak in one of my pokets-what should of taken 1-3 day stay in the hospital ended taking at one hospital 19 days & 2 days later another 6 day stay because i coughed too hard. Thank You for being stern, bold & honest with me. You guys are the first one's to really tell me & understand & with knowledge of what PF is all about. I'm only learning by researching online. Up until recently i have been so ignorant of what PF is all about. I know that it is life changing. Believe it or not, i'm still learning. I still can't believe the severity of the disease myself. AS for my doc, i see him in a week & he plans to refer to the University Hospital to go through various other tests & to be put on transplant list. I've asked my lung doc & my PF doc how to get an oximeter, but neither was helpful. I did feel that i needed one, but without anyone else to counsel me...i've just been living by faith.With the referalls & websites..i will get one and will stay on O2. I do get exerted..i've just tried to live a slower paced life. It has been a HUGE adjustment & only being 42 years old-its been HORRIBLE! Subject: Re: flyingTo: Breathe-Support Date: Sunday, August 30, 2009, 8:36 PM DorothyHow were you diagnosed? How do you even know what disease you have?An oximeter is the instrument like the doctor should use in his officeto measure your saturation. They are available for as little as $65. NoPF patient should be without one.You keep repeating that you're not the best patient and fight what youdon't want. I'm sorry but then why go to the doctor or come here? I dobelieve in informed decisions but it sounds like you're just making thedecision not to use oxygen when you need it. You know you need it forsleep. You know you do for activity. Oxygen is the most essential toolthere is for PF. If you're not going to use it then I really don't knowany information or advice we or a doctor could give that would benefityou. Everything else is debatable. Maintaining saturation levels isessential to protecting your heart as well as to just your daily health.I also strongly encourage you to get to a teaching hospital with anInterstitial Lung Disease department (not just a regular lung practice) such as one of the IPF Centers of Excellence. The nearest to SA in inDallas. Get a complete workup and information and a good solid diagnosiswith recommendations.I'm frightened and saddened greatly as I imagine you with your oxygendropping to such levels. If you have PF and if its dropping to 75% atnight, I don't even want to imagine how low it is going when you exertyourself 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 thealtitude...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 I'm so happy that we are able to help! I do understand your frustration and even your resistance. I was diagnosed when I was 46, just a bit older than you are. The frustration of having a disease like this in what is supposed to be the "prime of life" is intense! Stick around and keep asking questions. There is alot of knowledge and support here. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, August 30, 2009 10:50:45 PMSubject: Re: Re: flying I was diagnosed PF-UIP with a lung biopsy of which i had 4 surgeries in oct '08--everything that could go wrong did. I had many complications of which my lung collapsed twice, my tubes got infected & they found a leak in one of my pokets-what should of taken 1-3 day stay in the hospital ended taking at one hospital 19 days & 2 days later another 6 day stay because i coughed too hard. Thank You for being stern, bold & honest with me. You guys are the first one's to really tell me & understand & with knowledge of what PF is all about. I'm only learning by researching online. Up until recently i have been so ignorant of what PF is all about. I know that it is life changing. Believe it or not, i'm still learning. I still can't believe the severity of the disease myself. AS for my doc, i see him in a week & he plans to refer to the University Hospital to go through various other tests & to be put on transplant list. I've asked my lung doc & my PF doc how to get an oximeter, but neither was helpful. I did feel that i needed one, but without anyone else to counsel me...i've just been living by faith.With the referalls & websites..i will get one and will stay on O2. I do get exerted..i've just tried to live a slower paced life. It has been a HUGE adjustment & only being 42 years old-its been HORRIBLE! From: brucemoreland <brucemoreland@ gmail.com>Subject: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 30, 2009, 8:36 PM DorothyHow were you diagnosed? How do you even know what disease you have?An oximeter is the instrument like the doctor should use in his officeto measure your saturation. They are available for as little as $65. NoPF patient should be without one.You keep repeating that you're not the best patient and fight what youdon't want. I'm sorry but then why go to the doctor or come here? I dobelieve in informed decisions but it sounds like you're just making thedecision not to use oxygen when you need it. You know you need it forsleep. You know you do for activity. Oxygen is the most essential toolthere is for PF. If you're not going to use it then I really don't knowany information or advice we or a doctor could give that would benefityou. Everything else is debatable. Maintaining saturation levels isessential to protecting your heart as well as to just your daily health.I also strongly encourage you to get to a teaching hospital with anInterstitial Lung Disease department (not just a regular lung practice) such as one of the IPF Centers of Excellence. The nearest to SA in inDallas. Get a complete workup and information and a good solid diagnosiswith recommendations.I'm frightened and saddened greatly as I imagine you with your oxygendropping to such levels. If you have PF and if its dropping to 75% atnight, I don't even want to imagine how low it is going when you exertyourself 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 thealtitude...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 Here is a good resource for an inexpensive oximeter. http://portablenebs.com/choiceoximeter.htm That unit is $64.95. Any FDA approved oximeter is ok. Do not get one that is not FDA approved. You talk about slower life and not being exerted but you'll be amazed properly oxygenated how it can be. It won't be like you wish it was or it once was. But I'll guarantee that being on oxygen and at 93% will feel a lot better than it feels to be at 90-85%. I get on the treadmill at 5 lpm oxygen. Our beloved moderator uses 12 lpm on the treadmill only but still is able to do it. Then she and I both get out and about. I honestly wonder how the year before I was diagnosed might have been on oxygen as I was able immediately to do things I couldn't before. Sorry to hear about your surgeries and complications. Also never hesitate to go to other doctors for second opinions. You can travel to another city and in just a one day consult get another opinion, completely independent. If it just confirms your first opinion then all that much better to be sure. I've seen people come here who felt doctors just told them they had a terminal disease, nothing they could do, go home and wait to die. Well, we're about living with PF and helping you find the way to do so. It's really a shame that doctors don't educate more on that aspect but, honestly, many don't grasp it themselves. Transplant is certainly a consideration down the road but there is so much to enjoy until then. I also hate that you're facing this so young. That does give rise to the question as to what form of PF and have they recommended any medications. I ask because UIP or IPF are more common in older patients than you and NSIP and other varieties seen more in younger than they are in older. The treatment and prognosis is different based on the form and that should be information from a lung biopsy on top of HRCT's. Always good if multiple pathologists didn't review the biopsy to get that done too. Also often in younger cases a cause can be found, whether a previous treatment for other diseases or an underlying connective tissue disease. Make sure you're fully evaluated for all connective tissue diseases. If you haven't been to respiratory rehab, get your pulmonologist to prescribe that. You'll be amazed what it can do toward strengthening you overall and teaching you more about your capabilities. One last remark. By coming here you've taken a proactive step. You need to become manager of your medical condition, questioning along the way. Get copies of all labs and tests and reports. If you're not comfortable with what someone says, see someone else. If your oxygen supplier doesn't meet your needs, get another. You'll be amazed that some of the helplessness we feel at first improves as we find we do have some control and can make some choices and decisions. You'll find patients here who were so filled with despair until they got to the right doctor for themselves and suddenly they felt armed again. I know a lot is being tossed your way. Don't try to digest it all at once. Living with PF is something we continue to learn every 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...
Guest guest Posted August 30, 2009 Report Share Posted August 30, 2009 Thank You Bruce...that is alot to think about. Subject: Re: flyingTo: Breathe-Support Date: Sunday, August 30, 2009, 10:14 PM DorothyHere is a good resource for an inexpensive oximeter.http://portablenebs .com/choiceoxime ter.htmThat unit is $64.95. Any FDA approved oximeter is ok. Do not get onethat is not FDA approved.You talk about slower life and not being exerted but you'll be amazedproperly oxygenated how it can be. It won't be like you wish it was orit once was. But I'll guarantee that being on oxygen and at 93% willfeel a lot better than it feels to be at 90-85%. I get on the treadmillat 5 lpm oxygen. Our beloved moderator uses 12 lpm on the treadmill onlybut still is able to do it. Then she and I both get out and about. Ihonestly wonder how the year before I was diagnosed might have been onoxygen as I was able immediately to do things I couldn't before.Sorry to hear about your surgeries and complications. Also neverhesitate to go to other doctors for second opinions. You can travel toanother city and in just a one day consult get another opinion,completely independent. If it just confirms your first opinion then allthat much better to be sure.I've seen people come here who felt doctors just told them they had aterminal disease, nothing they could do, go home and wait to die. Well,we're about living with PF and helping you find the way to do so. It'sreally a shame that doctors don't educate more on that aspect but,honestly, many don't grasp it themselves. Transplant is certainly aconsideration down the road but there is so much to enjoy until then.I also hate that you're facing this so young. That does give rise to thequestion as to what form of PF and have they recommended anymedications. I ask because UIP or IPF are more common in older patientsthan you and NSIP and other varieties seen more in younger than they arein older. The treatment and prognosis is different based on the form andthat should be information from a lung biopsy on top of HRCT's. Alwaysgood if multiple pathologists didn't review the biopsy to get that donetoo. Also often in younger cases a cause can be found, whether aprevious treatment for other diseases or an underlying connective tissuedisease. Make sure you're fully evaluated for all connective tissuediseases.If you haven't been to respiratory rehab, get your pulmonologist toprescribe that. You'll be amazed what it can do toward strengthening youoverall and teaching you more about your capabilities.One last remark. By coming here you've taken a proactive step. You needto become manager of your medical condition, questioning along the way.Get copies of all labs and tests and reports. If you're not comfortablewith what someone says, see someone else. If your oxygen supplierdoesn't meet your needs, get another. You'll be amazed that some of thehelplessness we feel at first improves as we find we do have somecontrol and can make some choices and decisions. You'll find patientshere who were so filled with despair until they got to the right doctorfor themselves and suddenly they felt armed again. I know a lot is beingtossed your way. Don't try to digest it all at once. Living with PF issomething we continue to learn every day.> > >> > > 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 31, 2009 Report Share Posted August 31, 2009 Dear Dorothy,You've been through so much! Know that I am praying for you. Your basically finding a new way to live because you have to. That's not an easy thing to do, but it is doable. PJ in Ohio, 54, IPF '09, Sjogren's '95 Re: flyingTo: Breathe-Support Date: Sunday, August 30, 2009, 8:36 PM DorothyHow were you diagnosed? How do you even know what disease you have?An oximeter is the instrument like the doctor should use in his officeto measure your saturation. They are available for as little as $65. NoPF patient should be without one.You keep repeating that you're not the best patient and fight what youdon't want. I'm sorry but then why go to the doctor or come here? I dobelieve in informed decisions but it sounds like you're just making thedecision not to use oxygen when you need it. You know you need it forsleep. You know you do for activity. Oxygen is the most essential toolthere is for PF. If you're not going to use it then I really don't knowany information or advice we or a doctor could give that would benefityou. Everything else is debatable. Maintaining saturation levels isessential to protecting your heart as well as to just your daily health.I alsostrongly encourage you to get to a teaching hospital with anInterstitial Lung Disease department (not just a regular lung practice) such as one of the IPF Centers of Excellence. The nearest to SA in inDallas. Get a complete workup and information and a good solid diagnosiswith recommendations.I'm frightened and saddened greatly as I imagine you with your oxygendropping to such levels. If you have PF and if its dropping to 75% atnight, I don't even want to imagine how low it is going when you exertyourself 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 thealtitude...Can> anyone help?> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 thank u so much! i love this group already! From: brucemoreland Subject: Re: flyingTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 30, 2009, 8:36 PM DorothyHow were you diagnosed? How do you even know what disease you have?An oximeter is the instrument like the doctor should use in his officeto measure your saturation. They are available for as little as $65. NoPF patient should be without one.You keep repeating that you're not the best patient and fight what youdon't want. I'm sorry but then why go to the doctor or come here? I dobelieve in informed decisions but it sounds like you're just making thedecision not to use oxygen when you need it. You know you need it forsleep. You know you do for activity. Oxygen is the most essential toolthere is for PF. If you're not going to use it then I really don't knowany information or advice we or a doctor could give that would benefityou. Everything else is debatable. Maintaining saturation levels isessential to protecting your heart as well as to just your daily health.I alsostrongly encourage you to get to a teaching hospital with anInterstitial Lung Disease department (not just a regular lung practice) such as one of the IPF Centers of Excellence. The nearest to SA in inDallas. Get a complete workup and information and a good solid diagnosiswith recommendations.I'm frightened and saddened greatly as I imagine you with your oxygendropping to such levels. If you have PF and if its dropping to 75% atnight, I don't even want to imagine how low it is going when you exertyourself 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 thealtitude...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.