• kenneth-corsette

    Member
    March 2, 2019 at 6:35 pm

    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

  • Charlene Marshall

    Member
    March 2, 2019 at 8:13 pm

    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.

  • Charlene Marshall

    Member
    March 6, 2019 at 9:08 pm

    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.

  • eleanor-heppleston

    Member
    March 10, 2019 at 2:25 pm

    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.

    • Charlene Marshall

      Member
      March 10, 2019 at 8:13 pm

      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.

  • david-swain

    Member
    March 11, 2019 at 7:09 am

     

    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

    • eleanor-heppleston

      Member
      March 12, 2019 at 11:23 am

      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.

       

      • Charlene Marshall

        Member
        March 14, 2019 at 7:32 pm

        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.

  • Charlene Marshall

    Member
    March 11, 2019 at 7:10 am

    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.

  • steve-dragoo

    Member
    March 12, 2019 at 8:50 am

    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

  • Charlene Marshall

    Member
    March 12, 2019 at 10:01 am

    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.

  • steve-dragoo

    Member
    March 12, 2019 at 10:21 am

    @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…

    • Charlene Marshall

      Member
      March 14, 2019 at 7:13 pm

      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.

  • lisa-powers

    Member
    March 12, 2019 at 4:29 pm

    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.

    • Charlene Marshall

      Member
      March 14, 2019 at 7:22 pm

      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.

  • david-swain

    Member
    March 12, 2019 at 7:23 pm

    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

  • steve-dragoo

    Member
    March 14, 2019 at 12:04 pm

    @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

    • Charlene Marshall

      Member
      March 14, 2019 at 7:24 pm

      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.

  • david-swain

    Member
    March 14, 2019 at 12:52 pm

    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

     

  • steve-dragoo

    Member
    March 14, 2019 at 1:14 pm

    @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

    • steve-dragoo

      Member
      March 14, 2019 at 1:16 pm

      @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…

  • david-swain

    Member
    March 14, 2019 at 7:11 pm

    @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

     

    • Charlene Marshall

      Member
      March 14, 2019 at 7:30 pm

      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.

      • steve-dragoo

        Member
        March 14, 2019 at 7:51 pm

        @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

  • steve-dragoo

    Member
    March 14, 2019 at 7:36 pm

    @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

  • Charlene Marshall

    Member
    March 14, 2019 at 7:44 pm

    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.

  • pamela-martin

    Member
    March 15, 2019 at 9:40 am

    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.

    • lisa-powers

      Member
      March 15, 2019 at 10:45 am

      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.

      • Charlene Marshall

        Member
        March 16, 2019 at 8:50 am

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

    • Charlene Marshall

      Member
      March 16, 2019 at 8:49 am

      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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