• Brooks White became a registered member 3 years, 3 months ago

    • Welcome to the PF forums Brooks. Thanks for joining us!

      • 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/

    • Charlene, Tried to post again, but did not seem to work. Have not seen it posted by you on my behalf.

      • Hi @plch,

        I will post now on your behalf to the “Flying with IPF” forum for you 🙂 Its a busy time for me to try to stay on top of all the forum posts, so sometimes I get a little bit behind. Which internet browser do you use to access the forums? Sometimes browsers can cause trouble for people posting. Hopefully we can figure out the issue as to why you can’t get content up on the site. I’ll ask our tech team about this in the back end as well….


        • Charlene,

          Thank you for posting. The FAA sponsored report was interesting and it should have had received funding to complete and expand it. When I questioned Delta about what records were kept about the plane’s altitude during the flight beyond what was originally set in its plan at the outset. I was surprised to learn that there is no record kept (e.g., like info in a black box), so whether a plane exceeds 8000 ft even in a normal flight cannot be confirmed. For most individuals it would not be noticeable if below 10000 ft, but for the elderly and those with cardio/pulmonary issues, it might be different. It is important that patients consider whether they have pulmonary hypertension in addition to their base disease (e.g., IPF), as it can be overlooked in deciding whether to fly as they only consider the base disease.
          In answer to your question, I use Chrome. I initially tried to cut and paste and thought that might have been the issue, but subsequently I typed it in the Comment box and had the same result. Not sure why this works, but the other doesn’t.

          • Really interesting information to learn about Brooks, thanks for sharing! Next steps following the FAA report you sent would have been interesting, do you suspect it was a funding issue whereby more information wasn’t done? I’ve heard about the importance of PH and flying, even more so (argueably) than lung issues because it can do something to the arteries in the heart? That might have been someones experience they shared on the forums actually? I should go look it up and follow up; I am still working through about 60 emails today…

            Copying and paste typically is an issue getting stuff to the forums, as it can effect the formatting and have information flagged as spam. Odd, this seems to work well for you. On your registration page, as all the information filled in? I know if some of the answers to the required questions are left blank, this can also block some settings on a user’s profile. Let me know when you can, and if this isn’t the issue, I’ll continue investigating for you!


            • Hi Charlene,
              What you are doing is a daunting task. Thank you for doing it!
              I believe FAA never got the funds for additional study, but it is possible that there could have been other reasons as well. I have tried to interest various groups (eg AARP, various heart and lung associations and PH associations) in promoting further study, but have not gotten any traction. It has been great to find this forum discussion.
              The blanks on my registration reflected difficulty in altering privacy matters. I could not get it to change from “everyone”, so I left them blank when information was not required.

              • Hi Brooks,

                Thanks so much for getting back to me and for your kind words. The forum really is a great platform to connect with other patients, I’m glad you’ve found it as well.

                Thanks for sharing the details about your registration, sometimes the blank fields block certain permissions for a member when trying to access the forums. Are you still unable to post a reply under someone’s contribution? For example, if you go to the “Flying with IPF” discussion and click “reply” does a textbox come up underneath for you to type in and then click submit? It is strange to me that you can contribute to this messaging but not the replies. We’ll keep working on it!

                Enjoy your Saturday 🙂

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