Tips on Obtaining Liquid Oxygen

Tips on Obtaining Liquid Oxygen

Just breathe, passionate help for the PF journey
How do you get liquid oxygen?

Last week I shared my struggle to get my oxygen provider to bring me liquid oxygen. It took me five months, but I was finally successful. In case you missed it, last week’s column also included a video demonstrating how I have liquid oxygen set up at my home, and I also explained how I use portable tanks away from home.

I advocate for myself regularly, but I don’t get in the trenches and fight very often — only when necessary, or if an injustice has been done. Getting the supplemental oxygen I needed qualifies. There is no guarantee my tips will work, but they may help improve your chances of success.

Advocate for yourself because you’re worth it

God created you. You are precious. You deserve to get what you need. If you aren’t able to advocate for yourself, see if a family member or your doctor can advocate for you on your behalf.

Start before you desperately need it

It may take some time, so start the fight early. I began my fight before I knew I absolutely needed it. I didn’t want to start the process when I was in crisis. I was fine with a portable oxygen concentrator or gas cylinders until my oxygen needs were considered “high flow” – above 5 liters per minute. I now use 8 liters per minute.

Those denying your request have their own problems

I don’t mean this as a slam. The 10 people who denied my request had their own jobs to do. I’m sure I have no idea what was going on behind the scenes. You and your needs are important, no matter what else is going on with others.

Be polite but firm

The first five times I was polite and gave them time and room to respond. Their tactic was to never call me back. Don’t hesitate to keep asking for the next person in charge. I kept asking until I got to the vice president of the company. Tell them:

  • You have a terminal lung disease
  • Your need for higher levels of oxygen will only get worse
  • You are physically unable to carry and transport the gas cylinders, which are dangerous to transport
  • You will be unable to go to doctors appointments, pulmonary rehab and obtain your medications if you cannot leave your home
  • This is a life and death matter. Liquid oxygen is not for convenience
  • You will not stop until they bring the liquid oxygen
  • You do not want to take legal action, but you will if needed

Don’t give up until you’ve exhausted all avenues or the fight is too costly on a personal level

My first experience trying to get oxygen prescribed was three years ago. After four weeks of effort, I was distraught trying to get oxygen delivered, all while adjusting to the severity of my diagnosis. One afternoon my husband walked in, saw me sobbing on the phone and told me to hang up; we would buy the portable machine ourselves. We put it on a 0 percent credit card and paid it off over time.

Check out this audio recording

It is an interview of David J. Lederer, MD, the Pulmonary Fibrosis Foundation’s senior medical adviser. This interview is an hour long and talks about the different types of oxygen. It is excellent. At 48 minutes, 50 seconds he explains why liquid oxygen is so hard to obtain, and offers some tips of his own. It is worth a listen. Thanks to one of our readers, Bill, for letting me know about this resource!

One suggestion he had was to call or email the Pulmonary Fibrosis Foundation to see if they can help apply pressure to your provider or insurance company. Here is their contact info: email at pcc@pulmonaryfibrosis.org or call 844-TALKPFF (844-825-5733).

Even if you aren’t successful, congratulate yourself for being a proud warrior on your behalf

You may not win this particular battle, but you won a larger, more important battle by advocating and fighting for yourself. You matter, you are valuable, you count, and you are worth the effort!

Insurance coverage

Supplemental oxygen is very expensive. Most insurance plans cover this cost, but some do not. I’ve had both experiences. My first insurance carrier did not cover supplemental oxygen of any kind through their individual plans (which I had). I took them to the state insurance board, but lost. Initially, I had to buy my own equipment. I put one unit on a 0 % credit card and paid it off over time. I sold my professional library and tools from being a marriage and family therapist for 30 years to buy the other one.

Needless to say, I switched companies, and my next insurance company covered the cost. I now have Medicare, and they cover it as well. Please check directly with your insurance company about what your policy covers.

What I’ve shared is based on my own experience, and I realize I may be missing some information. I’d love to get your input on this topic! Please note that a doctor’s prescription is required for supplemental oxygen.

I’d love to hear from you! What was helpful for you about this column or video? Did you know about liquid oxygen before this column? What experience have you had trying to get liquid oxygen from your provider and/or insurance company? What tips do you have for us?

Please share this post with anyone you feel could benefit, or on social media. We’re in this together.

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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.

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10 comments

  1. Shavonne Thomas says:

    Hi thanks for sharing, i inquired about liquid oxygen, but my doctors believed that i had to many appointments during the week\ month and it would not be a good idea . I use 5 liters pm & we were considering liquid oxygen but after he stated that i would only have one tank to take out when i leave home , he wants me to wait . Im wondering if he’s waiting until he feels im homebound? O take c tanks out with me when i leave home i go through so many & the E tanks are so big snd so heavy because i also do a lot on my own. I hope the choice is right

  2. Theresa Rogers says:

    I would love to talk to someone who has the liquid oxygen and lives in a warmer climate area. My husband is on 10liters. We have trouble with the tanks freezing. Just wanting suggestions. Thank you

    • Bob Wells says:

      Theresa

      I was just told I couldn’t have liquid oxygen because of the freezing problem you mentioned. I live on the SE Georgia Coast between Jacksonville and Savannah.

      How often does your husband have a problem with freezing and under what specific weather conditions does it occur?

  3. Renee Emami says:

    I also have had to pay for the portable machine. We are on 2 liters currently so the liquid o2 hasn’t been mentioned yet. I spent a whole summer on the phone to get a portable to no avail. I would love to know how liquid o2 will figure in my husband’s future.

    • Geri says:

      I have been on the liquid oxygen since 07′. i really liked it. had a big tank at home to use, 24-7. No electric needed. was on 2 liters until last year. now it is 3 liters. had a portable i filled from the top of the tank. They came once a week and refilled the tank. I loved it. No higher elec bills, my portable allowed me usually 6 hours out of the house. was lighter to carry (in a case). They are now doing away with liquid oxygen. Have switched to elec consentrator at home, and heavy portable poc to go out (18#) or tanks in a pull cart. ! hate them!

  4. Jeff says:

    I have been diagnosed with pulmonary fibrosis since 2012.
    Dr Lederer was my dr. I was on a trial drug for 3 years. Currently using oxygen and taking OFEV also.
    Hemo Him recommended by my dr. It’s a herbal suppliment that helps the immune system. I am a chronic cougher. I know that in just one month your oxygen level can drop to an alarming rate yet I live everyday with gratitude and love.

    Dr Lederer said a couple of hopeful things I will always remember. First we live in an age of hooe, technology and modern medicine. I carry that mindset where ever I go and thank god and each person I meet and each day I have with my family and friends.

    I am very concerned about the current political threat to our countries healthcare system including medicare. So many people face difficult healthcare issues we really need medicare for all.

  5. Judith Frost says:

    Happy that you got what you needed. Question: 1) what ltr flow are you on during activity/walking and how long does a tank last you; 2) how often do you have to refill your tanks; 3) how many tanks do you take with you when gone from the house for a long time/8 hours or so; 4) how does temperature in hot summer sun effect the longevity of the use of a tank. Oxygen supplier said we could have only one or the other/liquid or D and E tanks – not both systems.

    • HI Judith, thanks for your comment and encouragement. To answer your questions, I am on 8 sitting, and 10 walking. I have two large tanks and they get filled once a week. I use liquid during the days, and my concentrator at night. My portable tanks last me about 1 hr and 20 mins. I take 3 with me, and I’m usually not out longer than two hours because I get pretty tired. I haven’t noticed the temperature affecting the longevity of the tanks much. I would pressure your supplier to get both. Everyone should have a back-up if one doesn’t work. Thanks for sharing.

  6. BILLY THOM EVANS says:

    I live in Texas with 100 degree temps. How does the heat effect have E tanks in my car? Is it dangerous to leave them in the car?

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