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  • Your Personal Travel Tips For Patients with PF

    Posted by Charlene Marshall on September 20, 2019 at 6:41 pm

    As many of you know, my long-awaited trip to Hawaii is on the horizon! I fly out on September 25th and while my excitement far trumps any other emotion or feeling, I’m now starting to experience a slight bit of anxiety specifically about my lungs and traveling as a patient with idiopathic pulmonary fibrosis (IPF).

    The members on this forum have gifted me in many ways, but one of the things I am truly grateful for is the information sharing based on personal experiences. No amount of literature, research or professional advice can equate to the benefits I gain from others’ experience and I am thankful for that. As a result, I recently reviewed some amazing columns from my co-columnists and fellow patients: Kim Frederickson (RIP, we miss you so much!) and Mark Koziol. They’ve previously written about tips and tricks that make traveling with oxygen and IPF a little easier through the following columns:

    The Challenge of Traveling with Oxygen

    3 Travel Considerations If You Have a Lung Disease

    Traveling by Air Again Following Lung Transplantation

    I have been very proactive in taking the steps to ensure my health is prioritized while I am away, including securing additional insurance (which I am privileged to have through work), bringing extra medications and making contact with physicians in Hawaii, thanks to my pulmonary team. I have no doubt that I’ll be fine, and I am so looking forward to some rest and relaxation by the sea. That said, I’d still love to hear from you…

    If you had one piece of personal advice to share based on your travel experience as a patient with IPF/PF, what would it be?

    chuck-harrison replied 4 years, 4 months ago 9 Members · 18 Replies
  • 18 Replies
  • cynthia-comery-ferguson

    Member
    September 22, 2019 at 4:00 am

    Have a wonderful trip, Charlene. I look forward to hearing how you handle any challenges you encounter. I haven’t traveled since getting my diagnosis and supplementary oxygen, so I’m particularly interested in how others do it.

    • Charlene Marshall

      Member
      September 22, 2019 at 7:10 pm

      Thank you so much Cynthia! I will definitely connect with our amazing forums community from Hawaii and *hopefully* confirm an uneventful flight. Looking forward to sharing my travels with everyone. Stay tuned – and know that, despite IPF traveling is still possible 🙂
      Charlene.

  • jayakumar

    Member
    September 22, 2019 at 3:51 pm

    Hi Charlene,

    I wish you happy and safe trip. Did you know about LTI 03 and LTI01?

    Please share the information, is it available in the market?

    Thanks

    Jayakumar

    • Charlene Marshall

      Member
      September 22, 2019 at 7:11 pm

      Hi Jayakumar,

      So nice to hear from you, thanks for your kind wishes about my upcoming trip! I’m not sure I’ve heard of LTI 03 or LTI 01… what are they? I can do some research for you, but so far it isn’t something I am familiar with.
      Charlene.

  • jayakumar

    Member
    September 22, 2019 at 7:16 pm

    Charlence,

    I hope you heared about wei laboratory, who is medicine? Any sode effects? Any ones life extend?

  • Charlene Marshall

    Member
    September 22, 2019 at 7:19 pm

    Hi Jayakumar,

    Oh, yes I’ve definitely heard of Wei products although not too familiar with the names of their options so I just didn’t recognize them. I’ve not tried it personally, but I know a lot of folks have. Take a peak through the forums by typing in “wei” to the search bar on the top right-hand side of the website and you’ll be able to read lots of experiences of people talking about Wei. Goodluck! 🙂
    Charlene.

  • john-styles

    Member
    September 23, 2019 at 6:14 am

    Hi Charlene, I take lots of wipes and squeeze bottle hand sanitizer and wipe everything down and do my hands often. I also take Alicin the ingredient in garlic that has reputation of being anti bacterial. If some one is sneezing or coughing I avoid them.  I take a g3 innogen with me with spare columns and extra batteries and a extra detached battery charger. I also notify the airlines I am bringing my oxygen unit and batteries, the airlines want you to bring 1 1/2 batteries for your flight and lay over. I have been to Europe twice and Hawaii and I am currently in the mountains of North Carolina since I was diagnosed

    with this disease. I have to use oxygen uphere because I am at 3000ft coming from sea level.  Happy travels and lots of fun for you.

    • Charlene Marshall

      Member
      September 24, 2019 at 12:35 pm

      Hi John,

      Thank you so much for all of your advice and kind words regarding my trip! I am excited, but also starting to get a bit nervous regarding the viruses and germs that will be on the plane. I will do all the suggestions you’ve mentioned, and also have my mask with me which I’ll wear on the plane too. I’ve notified the airline about bringing oxygen, and the code needed to do so has been applied to my ticket – exciting! 🙂

      Will share an update upon arrival.
      Cheers,
      Charlene.

  • nikchron

    Member
    September 24, 2019 at 9:17 am

    Hi Charlene, Please request handicap transportation when you check in you luggage curbside with the skycap. Conserve all you energy, let them do all the lifting and walking for you. Take plenty of batteries and charger for your potable oxygen generator. You will be going into higher elevations on the plane, conserve your air. Maybe not speak much, relax and meditate. Also manage your POC, use lower settings to conserve batteries and monitor your O2, it is a long flight. When you get there remember to use the handicap transport to pick up and carry luggage. Also find an outlet to charge batteries or better yet have an oxygen tank waiting at baggage claim. Enjoy your trip and breathe Easy!

  • nikchron

    Member
    September 24, 2019 at 10:30 am

    Hey Charlene, Wearing a breathing mask and a sanitizer regimen is a great idea. Also I heard of a airline stewardesses trick of using antibiotic gel around the nostrils to combat airborne germs! Have a great time and stay healthy ?

    • Charlene Marshall

      Member
      September 24, 2019 at 12:33 pm

      Hi @nikchron,

      Thank you so much for your kind words regarding my trip and all of your thoughtful advice! I have lots of battery power for my POC and have arranged help at the counter, which I am very grateful for. It is a long flight and I am hoping I can sleep and catch up on some rest, as I am really in need of it. My breathing I hope will be much improved on the coast, I’ll be curious to see how my lungs tolerate the fresh, seaside air. I will keep everyone posted and look forward to sharing with everyone a big hello from Hawaii. I am SO thankful for this community and all of your well wishes and suggestions for a successful trip. Hugs!
      Charlene.

  • jerry-s

    Member
    September 24, 2019 at 11:35 am

    I have made the trip to Maui many times.  The last two time with IPF.  Call the airline and request a wheel chair.  Get as much rest as possible and conserve energy.  Have a pulse/oxy meter with you and make sure you keep your oxygen level up.  The trip home is the worst.  If you have travel companions have them carry your bags.

    • Charlene Marshall

      Member
      September 24, 2019 at 12:37 pm

      Great suggestions Jerry, thank you! I will have a travel companion with me for part of the trip and they know about my fatigue and IPF needs, so I’m glad I can ask them to help me. I’ve called ahead to the airline, and they’ve also been very supportive when I’ve flown with them in the past 🙂

      Now I need to work on conserving my energy for tomorrow, because I’m already very tired and haven’t even left yet. It’ll be so good to get a good night’s sleep tonight and just relax tomorrow ahead of the long flight. Thanks for sharing your experience and for all of your wonderful advice!

      Kind regards,
      Charlene.

  • david-ota

    Member
    September 24, 2019 at 11:39 am

    Hi Charlene

    I traveled quite a bit with IPF as well as post Lung transplant for work and personal trips.

    There are some great ideas in the previous posts, here’s my personal list:

    1. Bring twice your required meds, one in checked, one in carry on.

    2. WEAR your mask! When I first started traveling with IPF I was self conscious about wearing a mask on a plane.  Then I discovered NO ONE WANTS TO SIT NEXT TO THE SICK TERRORIST.  I got the black mask from RZMASK and I was told I look like Bane from Batman.  Many times, the last seat taken is the seat next to me (Southwest).  I throw in a couple of wet coughs during boarding and I’m as good as I can get.

    3. Do not drink anything from the plane, water, coffee, soda, wine, nothing.  Bring your own water and snacks.

    4. Make sure you have the correct paperwork signed by your doc for the portable O2 concentrator.  I remember each airline had their own form.  (Extra Batteries too)

    5. Bring at least two bottles of hand sanitizer on the plane.  I lose more of those little bottles than I can count. (the wipes too)

    6. Bring extra paper filter masks.  I have lost my RZ mask, or forgotten it at the hotel.

    7. I have ‘travel’ meds of Prednisone, amox-clav, and levofloxacin.  These are if I start to feel like I am coming down with a cold or flu on travel.  I believe it is to prevent secondary infections. Got the scripts when I told the doc I was flying international.

    8. Use the handicap boarding.  Some of the airports are gigantic, and getting wheeled through them is great.

    9. I took my handicap car placard on one trip and forgot it in the rental car.  It came in handy though.

    10. Have fun, you are not an IPF patient venturing out into a hostile germ filled world, you are a beautiful young woman looking for sand, sun and fun.

     

     

     

  • Charlene Marshall

    Member
    September 24, 2019 at 12:40 pm

    Hi @davidota,

    Thank you so much for providing this thoughtful, and experienced list of suggestions for my trip. I am so grateful, as no amount of professional advice compares to the experiences of people living with IPF. Actually, your last sentence made me cry … probably out of exhaustion, but also excitement: I am seeking fun, sand and sun! Thank you 🙂

    I didn’t know about not having anything from the plane, although I usually do bring my own water bottle so I’ll make sure I do that. I also have ample medications prepared, and battery power for my POC. I will also make sure to wear my mask, this is something that took me some time to get used to but I am not willing to risk getting sick on this trip, so I appreciate your sharing. Thank you!
    Charlene.

  • nan

    Member
    September 24, 2019 at 6:14 pm

    Charlene, have fun, relax and enjoy. Hand wash hand wash hand wash. Sanitizer is good but not near as good as washing, lots of friction, rub fingers and hands together good.

    Enjoy listening to the waves, feeling the breeze and tasting the food!

    Nan

    PS, I have a respirologist appointment on Monday, locally.

  • Charlene Marshall

    Member
    September 25, 2019 at 10:49 am

    Hi Nan,

    Thank you so much for all of your kind words regarding my trip! I board momentarily and cannot wait 🙂 I will put all of your tips into practice and have washed my hands tons already today which is definitely important as you say. I can’t wait to dip my toes in the ocean and see the beautiful views of Hawaii!

    I am going to send you a message – that is SO great about getting an appointment locally. Please report back and let me know how it goes.
    Hugs,
    Charlene.

  • chuck-harrison

    Member
    September 27, 2019 at 10:58 am

    Hi Charlene ,

    hope your have a great time   ?❤️

    Youll have to let me know how sea air is working for you ,

    as always your friend ,

    Chuck

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