Traveling with Oxygen is a Challenge for PF Patients

Traveling with Oxygen is a Challenge for PF Patients

Just breathe, passionate help for the PF journey

I have a love/hate relationship with my supplemental oxygen. I use liquid oxygen at a flow of 8 litres per minute, 24/7, as well as an oxygen concentrator. I’m grateful to have it, for without it my organs would fail.

Using supplemental oxygen also has been quite a challenge, from obtaining it to beginning to go out and about with it.

My two portable liquid oxygen tanks hold enough oxygen for me to go out for three hours at a time. I’m grateful to still be able to go to the rehab gym, grocery shop or have lunch with a friend, three or four times a week. Some days I’m just too tired to leave home and lug everything around.

Today I went to a movie with a friend, but for some reason I used the O2 faster than normal, and I barely had enough to get home. Scary.

I just returned from a trip to southern California to attend my father-in-law’s memorial service. The picture to the right shows our backseat: Two liquid O2 tanks for the car, one 50-pound oxygen concentrator, and two portable units to use to leave the car or hotel.

I’m so grateful to be able to use supplemental oxygen, or I could not have attended

My lungs have worsened so that I am not able to fly anymore, even with a portable oxygen concentrator. It was wonderful to be with family and honor such a wonderful man, and I’m so glad I went. At the same time, it was so exhausting to have to lug all this equipment around, especially for my poor husband who has to pack and unpack everything. He is very kind about it all, but it is a strain on him.

I’m so glad I was able to attend, but a trip like that takes a toll

We drove 900 miles round-trip over a five-day period. It usually takes me a week to unpack and recover from how tired I get. As I write this, I still have suitcases to unpack and laundry to do. (It’s OK; there’s no rush.)

The trip got even more exciting when the oxygen delivery company brought only one tank before we left, instead of two. It isn’t a convenience to have two tanks, it is a necessity. I panicked because I needed both tanks to have enough to travel in the car, as well as attend family events and the service. The company arranged to have us pick up a second tank at the halfway point, which we appreciated. When we arrived there was a tank, but nothing in it because they ran out of liquid O2 the night before. So frustrating, but whatcha gonna do? After three hours of waiting, they filled it up and we were on our way.

I continue to be grateful for my supplemental oxygen, while at the same time frustrated by it. That’s fine, because both realities are true for me.

How about you? What are your experiences traveling with oxygen? Any tips for us? I’d love to hear from you. Please share on social media and with anyone you feel could benefit.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

 

17 comments

  1. Laura Reed says:

    I am so sorry you are up to 8- I know that’s where we will be someday- my husband is at 4- we flew with a portable o2 concentrator last week for the first time. The stationary concentrator was delivered to where we are staying as they have a branch here-we get very frightened as this is truly a matter of life and death

    • Hi Laura…thanks so much for sharing your experience traveling with oxygen. Your hubby is so blessed to have you by his side. I’m so glad that you were able to travel with a POC. I was able to do this for the first two years and we went lots of places. Enjoy your travels together. I know what you mean about it being frightening to think of them not delivering the concentrator, or your POC not working somehow. Fortunately this rarely happens, but it is a stress we live with running in the background. Blessings to you and your hubby 🙂

  2. thomas waszkowski sr says:

    I use a pulse flow on my tank at 7 put the tank is heavy to carry so I can not walk far, I can drive a good distance just concerned about night driving. I can still do some stares. My wife would like to fly to Las Vegas I don’t know if the air lines will let me go with a tank

    • Tim Bossie says:

      Hi Thomas. Thank you for sharing your experience with us. You might want to contact the airlines to see if they may supply oxygen for you. I have heard of airlines also letting passengers use the on board oxygen when needed.

    • Hi Thomas, What kind of tank do you have? If it is a portable oxygen concentrator, they will allow it as long as your POC is on their list of acceptable units. Every airline has a section about flying with oxygen. The airlines require that you have a Doctor’s letter indicating you are safe to fly with a portable oxygen concentrator. Blessings to you…

  3. Maria Averill says:

    I put an inverter in our Honda CRV so we can use the home concentrator in it and save the liquid for when we arrive. We have a lightweight EZ Cruiser wheelchair that I can fold and put in the car and either strap the liquid portable on it or use the tank sleeve on the back of it to hold 2 E tanks.
    People just don’t understand the shear logistics of getting from point A to point B on high flow. And now they are trying to phase out liquid oxygen all together! High flow patients will never be able to go anywhere!

    • Thanks so much for sharing your very creative solutions for traveling with oxygen Maria. I was blessed by your comment, “People just don’t understand the shear logistics of getting from point A to point B on high flow.” SO TRUE! You and I get it! It is scary they are trying to phase out liquid O2. I fought my provider for 5 months to get it, and I’m glad I did. Blessings to you. I love your spirit to keep living your life!

    • Eileen P says:

      Why are they trying to phase liquid oxygen out? So the liquid oxygen is used in combination with oxygen concentrator? My oxygen concentrator has to be plugged in. I’m trying to incision this setup. Is this for ppl needing a larger Liter of airflow right? Or in combination. I’m not sure how the liquid oxygen works. How does one even carry these tanks having this illness. My heart rate goes up just carrying myself. I’m also weak and frail. Does the liquid oxygen fill smaller portable tanks? I imagine right? And they only last 3 hrs. That is why I’m confused abt using it in combo with the portable liquid concentrator. Thanks

      • Hi Eileen, I’m happy to share what I’ve been told about providers wanting to phase out liquid oxygen. I use the big tanks at home, and a truck comes once a week to fill them up. i also have a high flow oxygen concentrator (that I bought) here as a backup. I don’t use liquid and the concentrator at the same time. I have two portable liquid oxygen containers – they call them “strollers”, that i fill from the big tanks to leave the house. I use 8 liters per minute which is considered in the high flow range. Each of the strollers lasts me 1.5 hours, so I can’t leave my home for longer than 3 hours at a time. I used to use a portable oxygen concentrator that went up to 6 (pulse, not continuous flow), but about 6 months ago I worsened and couldn’t use it anymore.

        I’ve been told that providers want to phase out liquid oxygen because it is very expensive for them to provide. I had to fight for 5 months to get the provider to approve my liquid oxygen. I know all this is confusing, and we shouldn’t have to fight so hard to get the oxygen we need to breathe. I hope this was a help to you. Blessings to you, Kim

  4. Gina says:

    My Dad was using E tanks to leave the house and 2 concentrators running simultaneously while at home. He needed 25 liters per minute to do any walking or exertion. He was supposed to travel to LA for my wedding, at the last minute Apria told him they wouldn’t support his trip. So he couldn’t go. It was hard enough for him to be teathered to the oxygen, Apria really took him to a whole new low by refusing to supply him for and on the trip. He had to miss my wedding

    • Oh Gina, I’m so sorry that your Dad had to miss your wedding because he wasn’t provided the oxygen he needed. That is so awful and heart breaking. I know he did everything he could to make that happen. I fight with oxygen providers regularly, and it is exhausting and shouldn’t happen. Sending you my very best wishes, Kim

  5. Geoffrey Hewitt says:

    I had large tanks generating 12-14 liters per minute; at rehab exercise I needed 20-25 liters per minute; my mother died of same disease in 1997 because I have familial type; blessed I had a single lung transplant in 2011 at Columbia Presbyterian hospital; celebrated 5 years this past September; there were many times in congested NJ roads I had multiple tanks in back seat due to traffic; I had to cross the GWB for 3 years to go from NJ to the Hospital in Manhattan. I was petrified of running out in traffic so would lower volume and could not breath. 5 1/2 years later it still is forever lodged in my memory for ever and those suffering I pray for

    • Thank you Geoffrey for your heartfelt empathy on all of our behalf. It means so much because you know the terror when you’re in a situation not knowing if the amount of oxygen you have will last. I’m so delighted to hear you received a lung transplant and are doing well. That lifts my spirits, and makes me happy for you. Thanks for offering your support. I know you treasure each day and are living it to the fullest.

  6. Cathy says:

    Thank you all for your input. IPF diagnoses is scary to hear.And to get the prognosis was pretty hard to digest. Carrying the tanks can be exhausting by itself. I had to accept and adjust. I think we all must get creative in order to maneuver the every day takes that did not require much thought or effort before IPF changed the ability to just breath. Now I can get the tanks in my car, eat out in restaurants, visit friends and family. Shopping is a bit more difficult than in the beginning. Kim I notice the picture of the cart. I use that same cart to load up tanks for my car if I am going to be away from home for longer than a few hours. All my plans revolve around how much oxygen I think I will need and extra “just in case”. I am dependent on it to breath. The POC only uses Pulse flow and I need more than that now. I am on continuous flow now. 24/7 and hook up the oxygen tube to my CPAP at bedtime. I am happy to hear positive stories and some humor in spite of the ordeal and fear of not having enough oxygen. Last summer I was at my grandson’s Lacrosse game. My daughter had to drive me to the Fire station because I ran out. They gave me a “loaner”. We got home then hooked me up to the big home concentrater and my daughter returned the tank to the FD. Just the little things we don’t expect. I really would love to get to FL for a few weeks, but there seems to be an issue with whether I can fly now. I don’t panic because I know my breathing will be worse. So I go with the flow…pardon the pun.Take care all.

    • Hi Cathy…thanks so much for sharing your experiences traveling with oxygen. I related to everything you shared. I always have a back up plan “just in case” the oxygen I’ve brought doesn’t last as long as anticipated. I’m in the same boat with the POC, it is no longer enough if I’m moving around, but I keep it in the trunk of my car, as a backup. How scary to have to go to the Fire station for emergency oxygen, but so glad your plan worked out. I am no longer able to fly now which is really hard. I so appreciate you sharing your experiences with us. We’re in this together, and sharing with others who truly “get it” really helps. Blessings to you.

  7. Shirley van Heuverswyn says:

    Thank you so much for sharing your story. I was diagnosed with PF in May 2016. It was a devastating blow. They are getting ready yo do a lung biopsy on me soon. They want to definitly make sure of the diagnosis. I am anxious about it but I have to trust the doctors know what they are doing. I am not as bad as each of you and I pray for each of you.

    • Hi Shirley, Thanks so much for your comment. I’m so sorry about your diagnosis…just less than a year ago. I hope the lung biopsy goes well, and helps your docs determine the best treatment for you. It is a devastating blow. I appreciate your prayers and am sending some your way too. Blessings to you…

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