• Charlene Marshall

    Member
    February 23, 2019 at 8:32 am

    Hi @lo3241 (Barry),

    Thanks for raising this topic for discussion in our forums, it is a good one! Doctors seem to be inconsistent in their answers about flying with IPF. As an example, you mentioned one of the doctors said as long as your pulse ox is >95 you’d be okay,  and my friends Mom who has NSIP, the doctor mentioned >98% pulse ox. He approved her to fly recently and she did great. Shortly after my diagnosis, I flew to Australia (13+ hours on a plane) and had no issues, so I wonder if it all depends on your condition and oxygen requirements. Do you use supplemental 02 at all Barry? I bought a portable oxygen concentrator (POC) that is FAA approved, separate of my insurance covered oxygen tanks, for the purpose of remaining able to fly. I’ve figured out which airlines allow the POC on board without any additional medical paperwork, which I can get but it is a pain for my doctors and costs me to have them fill it out. Therefore, I try to fly with specific airlines when I bring my oxygen, but I’ve definitely flown since my IPF diagnosis in 2016, to: NYC, Cali, Vancouver, Halifax, Boston. Shorter flights than Australia mind you, but I didn’t have any issues.

    I think I’d want to understand more from the doctor who said you shouldn’t fly under any circumstances, and why he/she said that, especially if you can utilize supplemental oxygen to help keep your sats up. Not sure if this helps at all? Feel free to be in touch if you want more information 🙂

    I love to travel, so talking about flying is fun for me – this was actually my biggest fear after being diagnosed with IPF, that my ability to travel would be lost. So far and with proper precautions, I am happy to report it hasn’t!

    Charlene.

    • floyd-c-montgomery

      Member
      March 6, 2019 at 12:13 pm

      Hi Barry.
      I was diagnoised with IPF about 2 years ago. I have been on oxygen for over a year, and currently use a flow of 6l to walk.
      Last August my wife and I flew from Lancaster PA to Colorado Springs to see our great grandkids. I made arrangments through my oxygen suplier for a concentrator in my motel room and oxygen bottles to use when walking. I have an Inogen portable concentrator I use to fly, but made arrangements for wheelchairs for my wife and myself at the airports. The Inogen only goes up to pulse 5, but that is enough when I am sitting in the plane or in a wheelchair.
      My doctor ordered a high alititude test, and since I passed that, he reluctently let me fly.
      Had a scary experence coming home, when the TSA in Colorado took my extra battery from my wifes carry on and didnt tell us, but that their fault, not the concentrators.
      Flying is a challenge, but knowing this was probably the last time I would see my great grandkids, it was worth the effort.
      PS. I am 83 yrars old

  • Deleted User

    Deleted User
    February 23, 2019 at 9:35 am

    Hi Charlene,

    Thanks so much for your reply. I do use supplementary oxygen 24/7/. Usually 4 lpm, but I may pump it up to 5 lpm if I am really out of breath. My pulse/ox has gone down as far as the mid 60s under exertion. But I usually recover pretty fast. When I was first diagnosed in Sept. 2015 I told the doctor  I had a trip planned to visit my daughter in California. I live in New Jersey, and he told me I should cancel the trip. We had purchased insurance, but they denied me because they said it was a pre-existing condition. But I digress.

    I have an Inogen poc that I think they will let me bring on the plane, so that may work. I just don’t want to be over Cleveland or someplace, and have a problem. My son suggested I take a shorter flight as a test case, and I may do that.

    Thanks,

    Barry

    • Charlene Marshall

      Member
      February 24, 2019 at 3:50 pm

      Hi Barry,

      No problem, I am happy to contribute my experiences if it might help others. We’re all in this together, that is for sure and I truly believe our best source of information comes from one another.

      Thanks for sharing a bit more about yourself too Barry! I use supplemental oxygen as well, but not 24/7 yet usually am between 2-4LPM depending on what I’m doing. Glad your sats recover quickly when they drop that low, gosh I can’t imagine how unwell that would make you feel. Sorry to hear the insurance company denied you as a pre-existing condition, that is awful. This was shortly after your diagnosis? I know there are insurance companies who have given coverage to patients with IPF. If you need this information in future, please don’t hesitate to let me know or search the forums for it too. I think some folks posted some great information about securing travel insurance despite having IPF.

      I was in New Jersey both December 2017 and 2018 when I visited NYC, we stayed in NJ. I hope to be back in 2020 when they have the transplant games in the Meadowlands, NJ. Have you heard that yet?

      The Inogen POC is FAA approved I do believe, and a quick Google search will confirm that for you 🙂 A shorter flight is a great idea, where would you go from NJ? If you do this, please let us know how it goes and hoping it goes well so you can visit beautiful Cali!

      Take care,
      Charlene.

  • john-styles

    Member
    February 23, 2019 at 10:09 am

    The airlines are accommodating, you have to usually get your equipment approved before flying, usually under flying with disability on the airline website. The airlines only allow pulse units and require enough batteries to 1 1/2 times the flight and layover. I have also been able to plug mine in if there is a outlet by the seat, When I am at home I can sit with no oxygen needed but I am usually have a saturation of 91 to 93, but I need the oxygen when flying on a setting of 3. What is scary is the germs, take lots of wipes and wipe everything down.

  • john-styles

    Member
    February 23, 2019 at 11:52 am

    Forgot to say altitude of where your coming from and going to is a concern. I live at couple hundred feet above sea level in Florida but when I go to North Carolina at 3200 feet its a big difference. I do not know how long it takes to get accumulated. Here in Florida I can sit, do a short walk around the house or sleep and I do not need oxygen but when I go to North Carolina I need oxygen at night and during the day.  Some times I go down to 2000 feet and I do not need oxygen.

    • Charlene Marshall

      Member
      February 24, 2019 at 3:54 pm

      Hi @caneelbay1,

      Good tips and important things to note for those considering flying. Yes, I remember the requirement of enough batteries for 1.5x your flight plus layover time. I couldn’t wrap my head around this the first time I flew, but shortly got the hang of it and now I lug “Chester”, my POC everywhere on flights. I find WestJet a particularly good airline to fly with when it comes to requiring oxygen; they have always been so accommodating for me. I hope to fly them to Hawaii in September too. I’ve not ever been able to plug my POC in while flying, but each airline is different I suppose. Yes, good thing to remember about altitude! I really noticed a difference when I was in Vancouver last April and went to the top of Whistler. That is a good thing for people to be aware of and yes, germs…

      Pesky germs! I wear a special mask when I fly, from the moment I step into the airport until I leave it. I also regularly wash my hands and wipe things down with hand sanitizer. This freaks me out a bit more than flying itself so I’m glad someone else mentioned this important reminder and precautions to take when you fly 🙂

      Chat soon,
      Charlene.

  • Deleted User

    Deleted User
    February 23, 2019 at 12:16 pm

    Thank you for opening this topic Barry @lo3241
    We are many here who would be desperate to give up flying.
    @caneelbay1 and @charlene-marshall contributions are showing that altitude and cabin pressure are affecting us but do not prevent us from Flying under certain conditions.
    I would be interested to get some physicians and/or pulmonologists official views about it …
    Jean-Michel

    • Charlene Marshall

      Member
      February 24, 2019 at 3:45 pm

      Hi Jean-Michel,

      Good thought, I’d be curious to hear some consistent answers from physicians about patients with IPF flying as well. I wonder if it depends on our individual conditions/disease progression? So much of the management of this disease is individualized, which doesn’t make it easy for those of us looking for answers on doing something specific such as flying. I’ve definitely flown since my diagnosis, both domestic and international flights and thankfully haven’t had an issue thus far but I do wear my POC on board. There are likely so many factors that make it possible for me, and maybe not for others and likely vice versa. I wonder how we could obtain some consistent advice from physicians on this topic. Any ideas?

      This would be helpful in my pursuit of going to Hawaii in September, pending I stay well enough to do so. It will be a long flight, but planning for it and saving (as it’ll have big financial implications on me) is keeping my spirits up 🙂

      Chat with you soon,
      Charlene.

  • john-styles

    Member
    February 23, 2019 at 12:31 pm

    I have two pulmonologists and one says fly and the other says do not fly that the airplanes are full of germs and if I got sick it would be real bad, I joke with my wife that she may be flying back with me in the cargo hole but she does not find that to funny. I flew from Florida round trip last year to Hawaii and also Milan Italy. No real problems but did need the portable oxygen.

    • Charlene Marshall

      Member
      February 24, 2019 at 3:57 pm

      Oh boy – I didn’t know you’ve been to Hawaii @caneelbay1! This might be trouble for you, as I am planning a vacation there in September – pending I can budget enough by mid-March to go, and am healthy enough… so I might have a million questions for you. Which island(s) did you go to?

      I would imagine your wife wouldn’t find that joke too funny yes, but hopefully it lightens the topic a little bit. I giggled a bit 🙂

      Thanks for being such an active part of the forums and I hope you’re having a nice weekend!
      Charlene.

    • lisa-powers

      Member
      March 12, 2019 at 8:24 pm

      @caneelbay1  In the Pulmonary Rehab classes we talked about germs on planes. Someone had asked a Flight Attendant how they stayed well. Their answer – rub antibiotic ointment in your nostrils. She was serious. I usually travel with masks so if someone is coughing, or there’s a small child nearby, I’m comfortable wearing it.  I have N95 masks bought for the fires in CA last fall. There is enough space that the mask doesn’t rest against my mouth or nostrils and the exit valve releases the exhalation, so it doesn’t get sweaty inside. I wore one for 3 hours straight and it was fine, though there is slight pressure on your mid nose. Washing hands before they get near your eyes, nose or mouth, and using hand wipes helps.

      • Charlene Marshall

        Member
        March 14, 2019 at 7:35 pm

        Wow @lisapowers, I’ve never heard of that before. Really interesting way to remain healthy, but I suppose they would know if it worked for them as I would think flight attendants would be exposed to so many germs. Interesting idea! I use hand sanitzer constantly while flying, and wear a mask as well. It’ll be on the whole flight to Hawaii – I use the Vogmasks 🙂

        Thanks for sharing, I’d never heard of this tip before and it might be one I simply implement in cold and flu season too!
        Charlene.

  • Deleted User

    Deleted User
    February 23, 2019 at 12:37 pm

    LOVE your joke @caneelbay1 (and your wife respons … do we have the same wife?) 🙂

  • anne-roberts

    Member
    February 24, 2019 at 3:56 am

    The last time I flew wasl in January on 2 x 4.5 hour flights, my respiratory team thought I would be ok. I bought a incredibly expensive concentrator plus extra batteries for flying but I found it very difficult to maintain my sats. I was gulping oxygen at pulsed 5l the whole flight so it was gobbling up the batteries, very stressful…. then I did not feel too good for a few days after each flight. I need supplementary oxygen 24/7  ranging from 2.5 to 8l depending on what I am doing so i am very dependant on that tube! I looks as tho each person reacts differently to flying and the only way you can tell is by trying a flight. As I seem to have a flare up of my PF each time I go on a plane my family have banned me from flying, which on reflection,  is probably a good idea for me!

  • john-styles

    Member
    February 24, 2019 at 7:58 am

    What Anne said is important. I think it depends are where one is with  this disease. I was going to not fly this summer as I have plans to go to the south of France, to do a walk I needed my larger oxygen concentrator on 5 and still dropped into the 78 range but now with the laser therapy I am doing I can walk without my oxygen concentrator. There is test that can be done to determine how much oxygen you will need when flying but it is expensive and not all big metropolitan area offer the test. I am in Tampa and was told I would need to go to Orlando.

    • Charlene Marshall

      Member
      February 24, 2019 at 4:07 pm

      Hi John,

      I just replied to Anne’s post about her experience with flying, and mentioned the test that I vaguely remember someone talking about head of traveling/flying. Do you remember the details of what it entails? This is something that seemingly isn’t standardized for patients, and you’d think it would be to ensure safety and patient comfort on planes when requiring 02. Interesting…

      Thanks again for replying to Anne, and completely agree with you about the importance of remembering that each person and their disease progression is different, which likely effects their ability to fly safely.

      Cheers,
      Charlene.

  • Charlene Marshall

    Member
    February 24, 2019 at 4:05 pm

    Hi Anne,

    Oh no, I’m so sorry that flying recently was so difficult for you! I can only imagine how stressful it would have been, knowing how much oxygen you needed and how quickly the batteries were being used up. Thank you for sharing this experience with us, albeit a difficult one for you, as I think it is important for folks to realize how different flying can be for each person. I’m also sorry to hear your respiratory team thought you’d be okay on the flight, giving you a bit of false hope by the sounds of it. Did they do any tests in advance of your going? I’ve heard of some medical teams conducting various tests on patients to see their suitability to fly but I don’t know anymore details than that. Although I’m sorry your family has banned you from flying, I’m glad it means you’ll be safer as that would have been such a scary experience for you!

    Thanks again for sharing and I hope this note finds you having had a nice weekend.
    Charlene.

  • anne-roberts

    Member
    February 25, 2019 at 2:59 am

    I have had a “fit to fly ” test in the past. They hook you up to a machine for 20 mins which provides the same oxygen level as a pressurised airplane cabin. If you don’t drop below approx 90% you are ok to fly. I was ok then but obvs not now. The Respiratory people said, just before I went on holiday in January, as long as I could provide oxygen at 2 times my resting rate it would be ok. I think my problem is that my version of PF (NSIP… don’t ask…. it is so rare even my doctor had not heard of it!) needs continuous flow not pulsed  which small concentrators cannot provide. Def a case of me being over optimistic as to what my equipment can provide. No matter, I am now using my concentrator on car journeys as it came with a car adaptor…. very useful! And this means I am able to take holidays using the car, I have had my wings clipped I am afraid! As I am 72 and have lots of memories of our travels I am content with my lot ?

    Many thanks for your post, and keep travelling as long as possible.  No saying later on “if only I had done….” seize the moment while you can.

    All the very best from this old Granny!

    • Charlene Marshall

      Member
      February 25, 2019 at 12:25 pm

      Hi Anne,

      Thanks so much for getting back to me, and I so appreciate your elaborating on what your doctors said about flying. It was the “fit to fly test” that I was thinking of, although, as in your case, this doesn’t sound fool-proof unfortunately. Sorry you still had a tough experience while flying! Regarding NSIP, this is what my friend’s Mom was diagnosed with last January after a terrible bout of pneumonia. Her lungs were in such poor shape that the doctors basically told her to get her affairs in order, and she was referred to our local transplant program. By the summer of that same year, she was off her oxygen and flew to visit her daughter in Calgary. I can’t help but wonder if their diagnosis was wrong? The transplant program basically sent her away. We still keep in contact a lot, and she looks amazing now!

      Really glad you’re able to use an adapter for your POC and travel by car. Isn’t that the best invention? I’m so thankful for mine as I was out east this past summer and it enabled us to make an amazing trip along the Cabot Trail in Cape Breton, which was truly breathtaking! Take care and thanks again for sharing your experience with us. I’ll continue traveling as long as I can as a result of your kind words 🙂

      Talk to you soon,
      Charlene.

  • Deleted User

    Deleted User
    February 25, 2019 at 3:24 am

    @amroberts2006gmail-com Dear Anne,
    Thanks a lot for sharing your experience and your sweet words.
    We will follow your advice, don’t give-up, continue travelling and flying as long as we can 🙂
    Warm hug to you “Granny”
    Jean-Michel

  • anne-roberts

    Member
    February 26, 2019 at 5:14 am

    While I may dish out words of “wisdom” sat here upon on my Granny seat, it is lovely to  read all your thoughts…. lung transplant, wow I didn’t know that could be an option. But as spare lungs are rarer than hen’s teeth I think it would be selfish of me to deny the chance of a new lung for a younger person, mind you if it was offered I would go for it!

    Here in the UK the special assistance for flying is incredible, nothing is too much trouble. It has to be as it is enshrined in law now. On my recent trip to the Canary Islands the airline I flew with did not bat an eyelid about taking my concentrator on board (and this was a budget airline not normally known for their generosity!). I had been warned to take a letter from my doctor to say that I need O2 24/7, they never looked at it all.

    A note about my version of PF ie NSIP…. it is very difficult to diagnose esp in the early stages. I was originally diagnosed with IPF (gulp!) then CT scans eventually showed my lungs looked as though they were full of ground glass ie NSIP. As it is an autoimmune disease it is progressive and of course life limiting… though by how much is like saying how long is a piece of string! So I am taking my own advice and not stopping travelling. I have booked three holidays this year all within 4 hours travelling time in the car. No wings now but wheels, that will do me! I LOVE planning holidays (it is the geographer in me), my family reckon I like this better than the actual holiday, so I am a happy bunny when I am sat with my laptop planning away 😀

    Thank you for taking the trouble to reply to my posts, it is great to be able share our experiences. As PF is such a rare condition it makes one feel less isolated as one does not normally normally bump into PF sufferers in every day life!

    Happy holidays to you all x

     

    • Charlene Marshall

      Member
      February 26, 2019 at 7:58 pm

      Hi Anne,

      Thanks so much for getting back to me regarding this topic. I love your analogies and sayings, they gave me a chuckle tonight, after a very tiring day, so thank you for that 🙂

      On a more serious note, do you think you’ll ever consider lung transplantation? I know some centres are specific on age, and condition of the patient but yes, my Mom’s friend Marg was referred to the transplant center after her diagnosis of NSIP. I think she is late 60s, maybe 70.

      I appreciate hearing how the UK is regarding air travel as I hope to get over there some day, and no doubt will need to bring my concentrator with me. I also usually prepare for flights by having a note ready for my doctor (even though sometimes it costs me) but rarely do the airlines look at it, which is kind of nice, as it lessens our ‘label’ of having a disability I guess. Just something I appreciate as a 31 year old living with a life-threatening lung disease.

      Really happy you continue to travel by car and plan holidays! Where are you going in your upcoming trips Anne? I am not nosey, promise, just love talking about travel. I understand the excitement you get from planning a holiday too, some of my friends think I also enjoy it more than the vacation itself. Planning Hawaii in September is what is keeping my spirits up, and I’m working hard to remain as healthy as I can so that I can go. Keep me posted on your travel plans too, I am excited for you! When is your first trip?

      Take care and thanks for writing. I completely agree with you re: feeling less isolated as a result of these forums!

      Cheers,
      Charlene.

  • ron-johnson

    Member
    February 26, 2019 at 8:24 pm

    Charlene @charlenemarshall

    Great discussion on flying. I needed that information and hope to fly from TX to CA in August. We may take a short trip before then to test the experience.

     

    Regrading Hawaii: Having been there 3 times here is my assessment: Maui is more populated but has the most diverse options for sightseeing: The coast along Maui bay is spectacular, the cities are good for shopping, the mountain (Haleakala) is great as well as the Low Country is peaceful with beautiful vistas as you approach the mountain. Then there is the Road to Hanna. It takes a couple hours to get there, but the trip provides many opportunities such as rain forest, views from the highway, black sand beach, pools for swimming that look out on the ocean (but hard to get to), and interesting features beyond Hanna.

    The Big Island is also spectacular with visits to the volcano, taking photos as the sun sets along the beach where the solidified lava goes red. We enjoyed visiting the coffee plantations, seeing the red berry beans in the groves, the processing approach, and doing coffee tasting. There is much history here also.

    Kauai is called The Green Island because it is. It is much less populated than the other islands, so it has a peaceful feeling with much less traffic. While it was extraordinarily beautiful (anywhere in Hawaii that isn’t?), it was not as interesting as the other two for my wife and me. But if pure relaxation is the goal, then Kauai might be right.

    Hope you have a delightful trip, Ron

  • Charlene Marshall

    Member
    February 27, 2019 at 11:03 am

    Hi Ron,

    Thank you so much for writing and contributing to this discussion thread. Its so fascinating to hear of others’ experiences with travelling an IPF. I appreciate your sharing, and please let me know if you do a test flight to see how it goes ahead of your trip from TX to CA in August. I had no issues, but I know others have as a result of this forum thread, so I hope it goes well for you.

    Thanks also for your information about Hawaii! I am so excited, albeit a bit nervous too as it is quite far from where I live in Canada. I didn’t plan on hitting Maui, but I’ve heard so much about it that I should maybe re-evaluate which islands I visit. I was going to just to Oahu and Kauai to save some money from flying between islands, but now I’m not sure. Would you recommend flying into Honolulu? Coffee tasting would be something I’d love to do! I want to focus on relaxation, beautiful views and spending time oceanside as the sea is my favourite place in the world (no matter where I am!).

    Thanks again for sharing!
    Charlene.

  • Charlene Marshall

    Member
    February 27, 2019 at 7:05 pm

    Hi Everyone,

    I am posting this on behalf of @plch (Brooks White, as we’re still trying to figure out why he can’t successfully post to the forums). Verbatim, he wrote:

    “Thank you. I have been trying to post the following on the discussion but it does not seem to be taking. Might be my computer. Perhaps you can add it to the discussion on my behalf. TKS.

    My wife has pulmonary Langerhans cell histiocytosis (PLCH). She was cleared to fly by her pulmonary doctor. She flew using Inogen POC at 2L from NYC to Prague non-stop (about 9-10 hrs). She did not need oxygen in airport in NYC but upon landing in Prague she could not walk 50 ft with gasping for air. This became permanent since then with her using O2 at night and generally throughout day. PLCH was not reason for change, but pulmonary hypertension from hypoxia (cabin pressurization) appears to be. She is WHO Class 5 because of PLCH, but could likely be Class 3 (like IPF). In Prague we went to hospital and was cleared to fly home. No HAST (high altitude simulation test) ever done, as it is rare to find hospital that provides it and many pulmonary doctors don’t even seem to know about it. Her current PH doctor tells patients that if they have PH, don’t fly. Other pulmonary doctors have not, but may not be considering PH. FAA, airlines, and airplane manufacturers are aware of the exposure to those who are seniors, or have cardio or pulmonary issues. FAA’s Office of Aerospace Medicine promoted a study entitled Health Effects of Aircraft Cabin Pressure in Older and Vulnerable Passengers(November, 2011). The study recognized the impact on this class on flights under 5 hours and noted need for further study particularly for longer flights. One critical finding was that passengers were asymptomatic during the flight. While some aircraft manufacturers have reduced cabin pressure from 8000 feet above sea level to about 6000 (e.g. Boeing 787) since the report all other recommendations have not been met. FAA regulations do not require air carriers or passengers to provide reports regarding medical events on board aircraft or individual health data. The FAA has no database with such information, to inform medical researchers about the effects of flying, particularly to older passengers and with pre-existing conditions that could be affected by insufficient cabin pressurization relative to their need. This is also true for foreign airlines. See recent German study- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5328610/“

     

  • david-swain

    Member
    February 28, 2019 at 1:41 pm

    Hello @charlenemarshall and everyone who has contributed to the Flying with IPF discussion.

    I would like to share my recent experience of long haul flights. I live in UK and have recently flown from U.K. to New Zealand involving two 11 hour flights with a 2 hour changeover. Although my IPF is mild and I am not on O2 I was concerned about the long flights, so my consultant arranged a “Fit to fly” test involving 20 minutes breathing air with a 15% reduction in O2 level to simulate cabin pressure conditions. As my resting O2 remained above 90%, I was given the all-clear to fly. During the flights, I did not experience any undue distress although my O2 levels dropped well below 90%. As you may imagine the effects of jet-lag were considerable and it took me about a week to feel normal again. I don’t know if the reduced oxygen level contributed to this. As I am still in New Zealand, it will be interesting to see how I am on the flight home.

    Before flying I also did some on- line research. Airlines have different rules regarding supplementary oxygen and some will actually provide this if requested by a doctor. I flew with Korean Air and they would have provided it, if requested.

    A useful website for checking Airlines polices is https://www.travelwithoxygen.com/airlines-supplemental-oxygen-policy/

    All the bast for your holiday in Hawaii, Charlene. I do hope you make it. It is indeed a great blessing for many of us to be able to travel, so let’s keep doing it as long as we can. David

    • Charlene Marshall

      Member
      February 28, 2019 at 1:46 pm

      Hi David,

      Thanks so much for jumping in on this discussion and contributing your recent experience on a long haul flight to NZ! I hope you continue to enjoy your holiday in that beautiful country 🙂

      The fit-to-fly test sounds really helpful for some, and then not so effective to others, like Anne and her experience with it. It should be nice to see facilities standardize this test for patients wanting to fly, as it sounds like you asked for this due to your concern with flying? Glad you didn’t have any issues on the way over. Did you bring your pulse ox with you to maintain your saturations, to know they went below 90%? That would have concerned me I think, but glad it didnt cause any issues for you. I can imagine it contributed to the fatigue and jet-lag for sure…. I remember that well when I was in Australia from Canada.

      Thanks for posting that link as well, it’ll be helpful for others considering future travel as I know each airline has different policies on either bringing supplemental oxygen with you or providing it. I’ll save and keep that link, referring to it in future.

      Thanks David, I am excited about the prospect of getting to Hawaii pending I can remain healthy enough for it and fit it in my budget. Fingers crossed! Enjoy the rest of your holiday and I hope your flight home goes well. Send me some sun and warmth from NZ 🙂

      Charlene.

  • anne-roberts

    Member
    March 1, 2019 at 4:40 am

    Technology can be a pain,  I have just typed in a long reply only to be told that it was unable to be posted , then it promptly lost all that I had typed in grrrrrrr! Lost the will to live at the moment will have another go later!

    • Charlene Marshall

      Member
      March 2, 2019 at 8:38 am

      Hi Anne,

      Oh no – I am soooo sorry to hear this! Nothing frustrates me more than hearing about members who write up a long post, giving their time and energy to a topic, only to have it swallowed by the forums. What happened when you tried to hit “submit’ on the bottom right hand side of the screen? Did the error message just say it couldn’t post right now? We’re trying to resolve this as Jean-Michel mentioned, and working hard with the developers about why on earth this is occurring. I am so sorry 🙁 I will try to see if it saved somewhere on the back-end of the site (sometimes it does) and release it if so, then let you know.

      Take care and thanks so much for contributing to the forums. Your posts are very valuable, and I am really sorry it disappeared on you.

      Charlene.

  • Deleted User

    Deleted User
    March 1, 2019 at 5:18 am

    @amroberts2006gmail-com dear Anne,
    Very sorry for that.
    I’ve got the same issue a few days ago, so I do understand your frustration. I know Charlene is pushing hard the site developpers fixing the Technology Issues. Now, when typing a long post, I’m allways copying my text (as a backup) before pressing “Submit”. All the best to you, looking forward reading your post.
    Jean-Michel

    • Charlene Marshall

      Member
      March 2, 2019 at 8:39 am

      Thanks for your kind words @jeanmichelf, and for explaining to @amroberts2006gmail-com, that we’re trying hard to resolve this issue. The efforts continue! It is so tough to get ahold of the site developer but we continue to work on it. Your suggestion of copying the text before you hit submit is a good one, thanks for sharing that tip and as always, lovely to hear from you! Happy Saturday 🙂
      Charlene.

  • niall-mooney

    Member
    March 1, 2019 at 6:42 pm

    Hi Barry,
    I have IPF since 2015 and up to March last I was not on supplemental oxygen. I had been misdiagnosed as suffering from post infection asthma until September 2016. After confirmation by biopsy my first pulmonary consultant had no issues with flying and I had no difficulties either though typically my flights would be of one to three hours duration. In April 2018 when I was hospitalised I was found to have three fractured ribs as a result of persistent coughing, it was determined that my IPF was not responding to the high tech drug that I had been put on in April 2018 and I was transferred to a second consultant with a view to having a lung transplant. After a full hospital workup I was put on the active transplant list in May. However this consultant completely rules out any flying mainly on the risk of airborne infection in the recycled air of an aircraft. He also put me on 24/7 supplemental oxygen. I have not flown since but I found that our national airline does not allow oxygen concentrators on their aircraft but can supply an oxygen connection for approximately 200 dollars! Apologies for such a long winded comment but I really just wanted to say that flying gave me absolutely no discomfort. Back then my oxygen saturation levels were typically 92 to 94 with no supplemental oxygen.

    • Charlene Marshall

      Member
      March 2, 2019 at 10:02 am

      Hi Niall,

      Thanks so much for writing to Barry and sharing a bit about your experiences with flying as a patient with IPF. I often wonder if doctors suggest patients not to fly because of the germ-exposure, in addition to altitude issues so that makes sense to me. I am very careful when traveling via aircraft for germ exposure too, as I am lucky to report that right now, flying doesn’t bother me. Best wishes for your lung transplant Niall, I hope all goes smoothly for you 🙂

      Charlene.

  • anne-roberts

    Member
    March 2, 2019 at 9:05 am

    Hi Charlene

    Yes the error message on the RHS was “could not post right now”. I thought my internet service had dropped off line so I had a look at my settings and they were OK but by the time I came back to my post it had vanished into the ether!. Cheers Anne

  • Charlene Marshall

    Member
    March 2, 2019 at 9:22 am

    Gosh, so sorry about that Anne. The most frustrating thing about that message to me, is that it doesn’t even explain why it can’t post right now… I’ll look into this more for you to see if there is anything that can be done our end. I’m searching the back of WordPress to see if your draft was saved anywhere before disappearing. I’ll keep you posted! Take care and enjoy your Saturday.
    Charlene.

  • anne-roberts

    Member
    March 2, 2019 at 4:07 pm

    This web site is excellent, written by genuine pilots that dispel a lot of myths about commercial airlines: http://www.askthepilot.com/<wbr />questionanswers/cabin-air-<wbr />quality/ 

    it could be that we may be a tad over anxious about the air quality in planes! Still a good idea to make sure to wipe everything with anti bac wipes tho.

  • Charlene Marshall

    Member
    March 2, 2019 at 4:09 pm

    Thanks for sharing Anne! Yes, I likely am a little over anxious when it comes to keeping germs contained on planes and will own that 🙂 I’d much rather be cautious then take any risks. Thanks for sharing the website, I’m sure others will find this informative as well!

    Take care,
    Charlene.

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