• Lisa Powers became a registered member 3 years, 8 months ago

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

    • Hi Charlene, I wanted to share our experiences with flying to Hawaii. I’m not sure how to post it to the topic, but you mentioned you were hoping to go to Hawaii soon. 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 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. 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.

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