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    • #16994
      Barry T Wines
      Participant

      I was wondering if anyone has flown with IPF. Have had conflicting answers from Doctors if they thought it was a good thing to take a long trip on a plane . II understand that the cabin is like being at 8000 ft. One doctor told me that I should not fly under any circumstances. Another doctor told me that if my pulse/ox was at least 95 with oxygen it would be OK. Anyone have any experience with this?

      Thanks

      Barry

       

    • #17012

      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.

      • #17374
        Floyd C Montgomery
        Participant

        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

    • #17024
      Barry T Wines
      Participant

      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

      • #17053

        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.

    • #17025
      john styles
      Participant

      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.

    • #17027
      john styles
      Participant

      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.

      • #17054

        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.

    • #17028

      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

      • #17052

        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.

    • #17029
      john styles
      Participant

      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.

      • #17055

        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.

      • #17637
        Lisa Powers
        Participant

        @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.

        • This reply was modified 1 year ago by Lisa Powers. Reason: redundant word
        • #17712

          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.

    • #17030

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

    • #17038
      Anne Roberts
      Participant

      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!

    • #17039
      john styles
      Participant

      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.

      • #17057

        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.

    • #17056

      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.

    • #17073
      Anne Roberts
      Participant

      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!

      • #17088

        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.

    • #17074

      @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

    • #17099
      Anne Roberts
      Participant

      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

       

      • #17116

        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.

    • #17122
      Ron Johnson
      Participant

      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

    • #17139

      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.

    • #17157

      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/“

       

    • #17169
      David Swain
      Participant

      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

      • #17184

        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.

    • #17196
      Anne Roberts
      Participant

      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!

      • #17224

        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.

    • #17197

      @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

      • #17225

        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.

    • #17216
      Niall Mooney
      Participant

      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.

      • #17239

        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.

    • #17228
      Anne Roberts
      Participant

      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

    • #17234

      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.

    • #17240
      Anne Roberts
      Participant

      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.

    • #17251

      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.

    • #17258
      Kenneth Corsette
      Participant

      Hello all, This may not be useful to all but I was diagnosed with IPF in Jan 2016. In 2017 my wife made a trip to Brisbane Australia when my FVC was 75%. We flew from LA to Brisbane, a 13+ hour flight. I have a POC with a 9 hour battery at 2l. I would use it for awhile, turn it down to 1l, then turn it off for a while. we made it to Brisbane with no ill effects that I know off. Not sure if I could do it now that I am down to 70% FVC. We had the time of our lives, Helmet diving on the reef, flying to Perth, taking the Indian/Pacific railroad to Sydney then a cruse ship to Seattle Wash.
      Life is now to short to not do what you want if your Doctor says it OK.

      Ken

    • #17263

      Hi Ken,

      Thank you so much for writing and for sharing that experience with us! It really resonated with me, as I love Australia (I am from Canada) and was privileged to go three times throughout 2015-2016. Actually, climbing the Sydney harbour bridge is where I first really knew something was wrong with my lungs. I loved thinking back to my time spent in Australia while reading your post…

      Glad your flight to Brisbane was uneventful and then subsequent flights within Australia too. Were you able to plug in your POC while flying? I thought most airlines didn’t permit you to do this, but I’ve recently heard that some now will, which of course, opens the door for more flights if we can do that. I use my POC on all flights too, I have the Respironics SimplyGo machine. Which POC do you use?

      So glad you made those memories with your wife, Ken and you’re absolutely right: if we are allowed to do something, now is the time to do it and take advantage. I am going to keep your words in mind when I book my Hawaii flight in a few weeks time!

      Cheers,
      Charlene.

    • #17387

      Oh my gosh Floyd, that must have been terrifying on your flight home! Did you ever connect back with TSA about this, given that their actions (ie. taking the extra battery) caused you some physical trouble. And what if your battery ran out, and you didn’t have a spare because they had taken it and never told you? I’ve never heard of something so horrendous, and I’m really sorry you had to endure that. I can’t believe they wouldn’t have told you! I hope they know never to do that to anyone again and glad your flight was worth the effort to see your grandkids. Thanks for sharing, I know Barry will appreciate hearing everyone’s replies regarding flying with IPF.

      Charlene.

    • #17528
      Eleanor Heppleston
      Participant

      We are taking a needed vacation and need to either fly or drive. My husband has IPF and his respirologist sent him for a ‘fit to fly’ test at the pulmonary lab. They tested his oxygen level at various altitudes. His results were borderline. Rather than dealing with taking oxygen, my husband is not on any as of now, he wants to drive. So we are extending our vacation time. Fortunately we are both retired. His doctor said taking oxygen depends on the airlines. Some, like Westjet, let you bring your own. Others want to supply the oxygen, at an added cost of course.

      • #17543

        Hi Eleanor,

        Thanks so much for sharing, and glad you and your husband found a way to extend and still go on your much needed vacation. This is important, and if you have a car charger for the portable oxygen concentrator, you should be able to do a road trip without any issues. That is wonderful! 🙂 Enjoy your vacation, hope it is filled with lots of great memories, and warm temperatures. I am from Canada, so if you are going somewhere tropical, please send the warmth back to us!

        Charlene.

    • #17552
      David Swain
      Participant

       

      Hi Eleanor,

      Following a Fit to fly’ test I flew from Uk to New Zealand in January. I still have to make the flights backs. Fortunately I did not need supplementary oxygen. While researching flying with IPF I found this website useful. It lists all IATA approved airlines and their rules for supplementary oxygen.

      https://www.travelwithoxygen.com/airlines-supplemental-oxygen-policy/

      I hope you and your husband are able to work out the best way to make the journey. A good vacation, or holiday as we call it in England, is a tonic which we can all do with.

      All the best – David

      • #17604
        Eleanor Heppleston
        Participant

        Thank you David for the website. I have bookmarked it for future reference. We have chosen to drive from Ontario to Florida rather than fly, (we both do like driving), but this will be great to use for future reference.

         

        • #17711

          Safe travels Eleanor! I’ve done that drive a few times, enjoy the trip and send us some warm weather when you arrive in Florida 🙂
          Charlene.

    • #17564

      Thanks for re-sharing this link for Eleanor, David – I’d forgotten that you posted it previously. I appreciate your sharing it again 🙂

      I hope you’re continuing to enjoy New Zealand, and its warm weather. It looks like such a beautiful country. Best of luck on your flight back home, I’ll be thinking of you!
      Charlene.

    • #17588
      Steve Dragoo
      Participant

      I am on O2 at night only at the moment and stats usually at 95 or a little higher. I was planning on flying to the Philippines in May without O2 but after reading this thread I am not sure… Steve

    • #17598

      Can you bring your oxygen concentrator with you on board, Steve? Even if I don’t feel like I need it to fly (I didn’t use it going to NYC, but did need it for Halifax for some reason…) I like having it with me just in case. Most airlines are fine with the POCs as long as they FAA-approved. Goodluck, let us know what you decide for your flight home to your wife.

      Thanks,
      Charlene.

    • #17601
      Steve Dragoo
      Participant

      @charlene-Marshall

      I don’t have a portable concentrator and when I leave I return the equipment that I have.  The portable bottles were picked up last week because my 6-minute walk test last month showed O2 staying and 90 and recovered fast when I sat down.  So I’ll see what the doc sats i emailed her a while ago…

      • #17705

        Hey Steve,

        Thanks for sharing and providing that clarification regarding the rented equipment. I wonder if the airline will provide it for you if needed awhile in-flight? Some airlines do this, especially if folks don’t have their own equipment and some still prefer that. Curious to hear what your doctor thinks is best….

        Charlene.

    • #17616
      Lisa Powers
      Participant

      Hi Charlene, I wanted to share our experiences with flying to Hawaii. My husband was officially diagnosed at UCSF in 2014, but a pulmonologist he’d been seeing had been writing PF on his visit summaries for 3 to 4 years before that. Strangely he never talked to us about it, or its implications, only that he had the crackling sounds. But he referred us to UCSF and my husband joined the last 8 months of the extended access of Esbriet before it went on the market. That’s the history.

      We flew to Honolulu on Hawaiian A/L in June of 2017. You go to the “handicapped” link on their website and find how to get the forms you’ll need, and to request assistance of any sort. Hawaiian’s has paperwork to fill out to identify your POC model, and requires a doctor’s letter stating that you’re okay to fly, and at what lpm, and whether during take off and landing or just during the flight. They don’t promise you a seat with electrical outlet, and you’re required to have 1.5 times battery power available in case of delays on the ground or air. You need to check in an hour earlier than everyone else. You get pre-boarding. At that time my husband didn’t get out of breath walking with the O2. We had to rent a large concentrator in Honolulu, where we stayed. We used U-Go Mobility. They need a copy of the Rx for Ox levels required which I faxed to them. So your MD needs to write this up as well. They delivered and picked up the machine free of charge, and were very nice. It cost $300 as Insurance did not cover it because we have a concentrator at home they’re paying for.

      Then in June of 2017 we went to Maui for 3 weeks, flying on Alaska A/L. This time I ordered wheel chair assist going and coming home. We still needed to arrive an hour before everyone else. Alaska was pretty relaxed about it all. It was great to have the wheelchair which helped us pre-board, enter shorter lines for security and get everywhere faster and without physical strain. Even just one year later than the first trip this would have been a detrimental experience for my husband to have had to walk. We flew the “premier economy” class to get just a bit more room for the equipment to rest on the floor. At this point any more comfort is justified if one can do it. On both trips his O2 sat was good when sitting and went down with walks to the bathroom. On Maui we used Gammie Homecare for a concentrator and took our own long tubing, though they would also provide it. They would charge $35 to deliver and pickup the machine each way, so we picked it up on the way from the airport in our rental car, but paid for the pick up to lessen the stress on departure day. It was $350 out of pocket – same insurance situation (Medicare) as last time, so it was just figured in as part of the vacation cost and deducted as a medical expense on out tax return.

      Know that you will be of interest to the security personnel, whether you’re in a wheelchair or not. That extra hour at the airport is well used. They will ask you if you can be disconnected from the oxygen, and let you keep it on, if not. He also has several metal joint replacements, so they really check him out with the wands. He also has spinal cord damage so holding things and range of motion is difficult. I always keep an eye on my husband’s equipment. No one takes anything away from us. They can look all they want, but I manage his things just so he can get his belt and shoes back on.

      You have to know how many hours your POC batteries will last at the rate of lpm you are using to know how many to take on the plane. Both airlines asked us how many hours of battery we had with us. We always had enough. On the first trip my husband would have been fine sitting if he ran out of battery, but on the second trip he would not have been. Just to say it, you CANNOT take oxygen tanks on an airplane, not even in checked baggage. And traveling is much more than just about O2 on the plane. You have to be prepared with what you need where you’re staying. Because IPF is rare, smaller and rural hospitals may not know how to deal with your special needs if you land in one (no pun intended) because of some unexpected event. You just need to be real about what you’re comfortable with and what you’re willing to risk. Going to or near a large city – no problem, just always carry a list of your medications, strength, and how you take them, and your medical history, emergency contacts – those with you and where you are going. I hope this is helpful, and encourage anyone to travel while you can still enjoy it. It’s a lot of work the less able we get, but a change of scenery and doing things you love are worth the effort – for you and for your family. I meant to add that the cost for the concentrator rentals was for 3 weeks each. They average between $100 and $150 per week, and I remember now that the 2018 price in June was $150 per week.

      • #17706

        Hi @lisapowers,

        Thank you so much for your thoughtful reply and the information you so generously shared about your trip to Hawaii. I am very grateful!

        Glad your husband was referred to UCSF after your doctor made the connection to mention it to you, sorry to hear it took so long! I know UCSF is a great hospital, as I know a few patients there who are very happy with their care. I do hope that was your husband’s experience too.

        I booked my flight with an airline I am comfortable with and have flown with before, having no issues with bringing my POC on board, thankfully. They may require more documentation as it is a longer flight but I did fly to BC (half way to Honolulu from where I am) last April with it, and to NYC as well on this airline with no issues so I am hopeful it’ll be the same. I also ensured I had a lay over in Vancouver long enough to fully re-charge my POC if needed. I will definitely speak to my doctor about getting set up with an oxygen provider there too, just in case, so I am not solely reliant on my POC. I hope to be able to rent a car and do lots of day trips, so a larger concentrator at night so I can save my POC during the daytime will be helpful. Thanks for providing me with the name of the provider you used, I’ll keep this handy as I continue to plan my trip. I think I will also bring my own cannulas as you say you did for your husband, despite the provider maybe supplying them…

        Like your husband, I also have metal in my leg from a bad break when I was young so I am typically “flagged” at the airport security as well 🙂 I don’t tend to mind, especially if it means someone is doing their job and keeping me safe on board the aircraft. Thanks for the heads up as well that the airlines will ask about how much battery I have available for my POC, I’ll make sure I have this information readily available for them. They’ve been so good before when I’ve flown them. The airline is WestJet, have you ever used them?

        Yes your information is super helpful to me, thank you! I will keep all your tips handy as I get closer to planning all the details, so far I’ve only just booked the flights. I will have to make sure I balance my time and energy as well, as I have a tendency to want to do everything and my body can’t keep up with this anymore. So appreciate all of this information Lisa, thank you again for sharing.

        I may reach out as my trip gets closer with more questions 🙂
        Charlene.

    • #17613
      David Swain
      Participant

      Hi @steve-dragoo. Just to share my experience with long haul. I live in Uk and am holiday in New Zealand – 2 11hr flights. I am not on oxygen. My resting O2 is 95. Before flying I had fit to fly’ test. I did not experience any discomfort while in flight, but think I may have taken longer to recover from jet lag. The link below may be useful as you can easily check out the oxygen policies of all airlines.

      https://www.travelwithoxygen.com/airlines-supplemental-oxygen-policy/

      Thanks for all your contributions, which I am following with interest. I start Laser when I get back to England 👍.

      Enjoy your hokiday in Philippines.

      David

    • #17689
      Steve Dragoo
      Participant

      @davidaswain

      Hi David – thanks so much for caring and posting your feedback.  My O2 readings are similar to yours and I am waiting on my pulmonologist to call me in the next day to two for clearance without O2.

      Have family over in Kiwi land and Aussie’s too.  May have to go there.  I almost relocated to NZ in the early 70’s post-U.S. Navy.

      Even-though you targeted this response to me, I did not see it until today after scanning various posts.  Sorry – wasn’t ignoring you… – Steve

      • #17707

        Hi @steve-dragoo,

        That is because I had to quickly edit a tag to notify you that David was trying to get in touch. It had “@stevedragoo” as opposed to @steve-dragoo, so I just edited the handle which would have pushed through a notification. Glad you were able to connect 🙂
        Charlene.

    • #17692
      David Swain
      Participant

      Hi @steve-dragoo,  Lovely to hear from you. From your previous posts , I think we are in a similar place re our condition. I also take serrapeptase and am about to start Laser on 29 March when I get back to U.K. I hope the Laser is still proving helpful for you, but am wondering what you will do while you are away from your practitioner.  I am particularly interested in this, as I’m hoping to visit NZ again in December. Our son and his family live here. – David

       

    • #17694
      Steve Dragoo
      Participant

      @davidaswain

      Hi David – Friends in the Philippines have helped me find a laser provider but I don’t know if they can do treatments and they are 850KM away in Manila.  By the time I go there, I should be on one laser treatment per week so I might possibly fly there as I have family there and can work with a ministry there too.

      Slowly increasing the serrapeptase, currently, at 280,000 SU daily (120,000 SU in A.M., 160,000 in the early evening) eventual goal is close to 500,000 SU daily.

      You will probably find class IV easier in the UK than in the USA or Philippines just make sure they use the right protocol Andy can recommend to you.

      I had a major heart stress test w radioactive dye and 2 MRI’s today.  Really good news they just called me and said there is no apparent blockage!!! ding ding ding… So I hope the pulmonologist will clear me to fly without O2. – Steve

      • #17695
        Steve Dragoo
        Participant

        @davidaswain – forgot to add there is a supplement forum here that might help you as I know clearly a couple of other supplements help me.  I am almost 70 so anything that increases endurance is welcome…

    • #17697
      David Swain
      Participant

      @steve-dragoo,

      Hi Steve. 850km os a long way to go for Laser! Actually there are very few K Laser practitioners in U.K., but with Dr Andrew Hall’s help I was able to locate one of the few, who actually practices 50km from my home. What a blessing! Perhaps we need to consult @drandrewhall to see if he has any view on how detrimental it is to leave off the therapy for a few weeks or months. We are hoping to visit NZ in December again for 2 months, but I can’t find any k laser practitioners here who work with humans. They all seem to be vetinarians.

      I’m aged 76 and I had a total artery blockage about 20 years ago, but opted for no stents or bypass, as my heart had built up its own bypass. I’ve been on “blockbuster all clear” (serrapepta, nattochinase etc) every since and a recent hospital test showed that I now have no heart problems. I think the serrapeptase may also have delayed the onset of IPF. So I’ve upped the dose of serrapeptase to 500,000 iu per day. Not sure how this relates to SUs.

      About 6 months ago, I also started Mitochondrial Rescue Therapy which uses Carnesine and Q10. This helped immediately with my energy levels. I noticed a difference when I had to stop recently when I ran out of supplements while in NZ. More have just arrived, so we’ll see what improvement there is. The link is https://www.mitochondrialrescue.com/

      Finally. I can’t find the supplement forum you mentioned. In fact I’m finding it difficult to navigate around the PFnews site😢. Blessings David

       

      • #17710

        Hi David,

        Thanks so much for getting in touch and your continued dialogue with Steve. So glad you’ve found things in common and connect on issues like Serrapeptase use 🙂

        We (the PF News) team are aware of many issues with the site as well David, unfortunately these arose after a latest web update and the developers haven’t been in touch with us yet on how to repair some of the issues. We’re working on it though, I promise! I really want it to be easier for members to be able to navigate and not have it be difficult, as it hosts lots of really helpful discussions and information. If you want, please feel free to write the exact forum issues you’re having trouble with in this survey (click on the hyperlink to the left). We’re hoping it’ll help us report back to the developers what the exact issues is, and what I can help people with as the navigator.

        Thanks in advance and hope NZ is still going well 🙂
        Charlene.

        • #17717
          Steve Dragoo
          Participant

          @davidaswain

          Hi David,

          Andy suggested I call veterinarians and see if they help.  Some might. Going off laser begins the regression again but if it is only once per week I am doing and if I return to the USA end of the year, should be fine considering the supplements.  Flying back home without O2 then could be a little challenging.

          Our bodies are amazing and that is great news about your heart.  Consider adding once-a-week autophagy – it is simple fasting for 24 hours + but using some things that aid autophagy – which acts similarly to serrapeptase except your body will generally recycle what it eats and it will help with damaged mitochondria in a unique way.

          SU has no real correlation to IU. SU is the measure of active serrapeptase in the dose.  I take natto but a couple of hours apart from the serra.  Regards Q10 – make sure you get it with ubiquinol – that is actually what works in the Q10.

          Steve

    • #17713
      Steve Dragoo
      Participant

      @Charlene-Marshall

      Hi Charlene – I could tell you were busy so I slowed down posting to help a little bit.

      I will probably use selective hearing when I hear from the doctor about flying and go without O2 anyway. What’s life for if you can’t take unnecessary risks when you want???

      Stress test today with radioactive tracers went well, I just need to stay away from airports for a couple of days so I don’t set off their nuclear detectors… hahahaha – seriously that was in their notice about this test.  So they called me this afternoon and gave me good news – heart is fine, no blockage and only a little inefficiency – life goes in.

      Laser tomorrow…

      Stay well – Steve

    • #17715

      You’re just awesome Steve, thanks so much 🙂
      Yes, the forums have taken on a life of their own, which has been the ultimate goal all along so we’re thrilled with the conversations that is taking place… it just keeps my emails very full but that is okay!

      Has the doctor replied yet about flying, I suspect not? It’s so important for you to be able to get back to your wife so I really hope the doc is willing to problem-solve with you or offer solutions that will be helpful. I’ll keep my fingers crossed, and I typically use selective hearing when it is something I want to do too…

      Really glad to hear the test and reports went well today, that is excellent! Hoping laser goes well tomorrow, you’re still feeling it is quite beneficial? Here’s to a quiet weekend ahead, I am looking forward to that 🙂

      Charlene.

    • #17731
      Pamela Martin
      Participant

      I don’t want to scare anyone, but I have had some pretty scared experiences flying, although I had been told no long haul and try and keep flight time 3 hours max, I done this, my first scare was about one hour into flight, my fingers went black and my arm went freezing cold, the stuardess noticed this, I told her I was going to turn my o2 up to full, I kept rubbing my arm and concentrate on breathing I made that one,

      the 2nd time just after landing I had a extremely bad nose bleed, bad enough, but this is The 3rd time, I felt like I was sitting on a tennis ball 🎾 on the back of my thigh, and was the size of a tennis ball, a clot had formed, straight away I went to seek medical help, but before I got there the lump had burst, my leg looked like I had been I road traffic accident, I really just wanted to make people aware of what could happen, I might be just unfortunate but I never had any problems before IPF, I am now awaiting transplant list but I do not intend to fly until I get sorted, If I get sorted with transplant.

      • #17737
        Lisa Powers
        Participant

        Pamela, your story is a very serious eye opener.  One never knows if this all comes from the IPF – directly/indirectly – or if medications or other health conditions – known or unknown – contribute to these surprising  and critical potential problems. It’s good that the airlines require a letter from our doctors stating that we are “okay to fly.”  My husband went through an echocardiogram and FVC tests before our last flight. The docs can give it their best opinion, at the same time realizing that, for some of us, this may be a last vacation and so willing to accept a little more risk, if we are.  Pamela, I hope for you, that you receive what you need to live your life with good quality and fulfillment.

        • #17783

          Beautiful reply to Pamela, Lisa… thank you for being so kind and generous in your replies and kind words 🙂
          Charlene.

      • #17782

        Hi Pamela,

        Thank you so much for contributing to this thread, and sharing your experience with flying, although I am so sorry this happened to you! Both events must have been so frightening…

        I think sharing this is important, and we know your intention is not to instill fear in anyone. It’s important for folks to know, like Lisa has said, about the risks with flying even if they are seemingly “rare”. Blood clots can be  really risky factor for those of us with heart/lung problems who are flying, and its super important to have a conversation with our doctors about this ahead of time, including the ‘fit to fly’ test if possible. I hope your leg recovered okay from the burst clot, and glad you’re staying grounded for awhile, until the transplant details are sorted. Wish you nothing but the best with that!

        Warm regards,
        Charlene.

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