PF Patient Fights for Liquid Oxygen

PF Patient Fights for Liquid Oxygen

Just breathe, passionate help for the PF journey
About a year ago I put on my “big girl panties” and began the fight to get my oxygen provider to supply me with liquid oxygen. Up to this point, I’d been using an oxygen concentrator at home, and a portable oxygen concentrator away from home. I also had a few gas cylinders on hand in case there was a power outage.

This worked fine for me until I started needing 7 lpm (liters per minute) of supplementary oxygen, and found it much more difficult to go out and about. (I’m now using 8 lpm.) I was physically unable to carry the amount of gas cylinders I needed to go to the doctor and run errands. My portable oxygen concentrator (Inogen G2) that went to a 6 liter pulse was no longer enough for me to use when walking.

I knew liquid oxygen was recommended for patients who were considered “high flow” (6 lpm and above). I also knew that it was difficult to get approved by insurance as well as delivered by oxygen providers.

What do I mean by liquid oxygen?

This is a type of supplemental oxygen made by cooling oxygen gas and converting it to a liquid. As it warms, it evaporates back into gas to breathe. Once approved, the provider delivers large tanks of liquid oxygen to the patient’s home, which must be filled weekly or biweekly by the oxygen provider.

Liquid oxygen tanks deliver up to six liters per minute, but they can be hooked together with a Y connector to deliver 12 liters per minute with two tanks, or 18 liters per minute with three tanks. I made the video below to show you how this all works.

I prefer liquid oxygen over gas cylinders or a concentrator. Liquid oxygen is slightly cool and soothing, and is much easier on my nose, which dries out terribly with a concentrator. This is especially important as patients require higher levels of oxygen.

Portable and home use

Besides using liquid oxygen at home, patients can also use it away from home by using portable oxygen containers, or “strollers.” These portable units are filled from the large liquid oxygen tanks that are delivered to your home. Please see the video below to see how my husband, Dave, fills them for me.

The liquid oxygen portable strollers are able to hold more oxygen than the gas cylinders and weigh half as much. Having two or three of them with me when going out helps me stay independent. I also have a smaller tank in my car. My oxygen company provides me with strollers by “Caire” that delivers liquid oxygen between ½ to 15 lpm. This system will last quite a while, even as my pulmonary fibrosis worsens.

Okay, I’ve explained how using liquid oxygen has helped me as my pulmonary fibrosis has worsened, but how do you get it?

The fight

The biggest problem I have experienced using liquid oxygen is that some oxygen suppliers are reluctant to carry it, or do not offer it at all because it is very expensive for them to provide. I understand the reluctance to provide it. I also understand that it is better for me than the concentrators and gas oxygen I’d been using.

My most recent fight involved getting a provider to authorize liquid oxygen delivered to my home. It took three months of fighting with my oxygen provider to get these tanks delivered to my house, and two more months to get two portable “strollers” delivered so I could use the liquid oxygen when out and about. I didn’t give up and kept asking to talk to the next supervisor up the chain.

They finally said yes when they realized I wasn’t going away. My exact words were: “You don’t know me, and that’s OK. What you need to know is that I will never give up. I sued the United States of America when they rear-ended me with their USPS mail truck and ruptured three of the discs in my back. It took four years, but I won that lawsuit. My next move will be to file a lawsuit against you.”

The next day I got a call and they brought the tanks to my home.

I’m glad I was successful, and using liquid oxygen has made a huge positive difference in my life. It should not be this hard to get the oxygen we need to breath!

I’ve created the video below to show you my equipment so you can see up close what the options are. I hope it is helpful to you.

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.

Please check back next week for my column about “Tips for Getting Liquid Oxygen” as well information about insurance coverage.

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? 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 Hypertension 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 Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

57 comments

  1. Robin Ives says:

    very informative Kim – it is good to understand what may come up in the future. My husband is not on oxygen at the present time. But there are times when I believe he could use it – especially when he is active.

  2. Paul Anderson says:

    I have been on oxygen for a little over 1 year. I had a home concentrator and tanks with requirement of 2 Ltr./ min. In March of this year I moved to St Cloud,Mn area and needed to transfer my prescriptions to new supplier. The Pulmonologist scheduled tests to determine need. Results were 2 at rest and 8 with activity. She specified on prescription a home concentrator with up to 10 ltr continuous and liquid oxygen for mobility/activity. Have only been able to get 2 liquid portables so far plus the large home reservoir. They work very well.

    • Paul Anderson says:

      I am on Medicare and when I started with new pulmonologist in St Cloud, I used to live in Grand Marais, she was the one that brought up liquid oxygen. She said with high volume required when active nothing else would work as well. I had less trouble getting liquid and two companion T portables than getting a home concentrator that could provide up to constant flow 10. (Still don’t have that one)
      Oxygen provider was here about 1:00pm today to fill home reservoir and a smaller reservoir that I borrowed from them for a trip back north.

    • Marjorie Heintzelman says:

      Valeria —- They tried that tactic on my husband years ago (Medicare doesn’t pay for it) translated – Medicare doesn’t pay enough to make it worth our while!!!!!

  3. Dave Elwell says:

    I agree with you that liquid oxygen is better. I have been on oxygen for 5 years and last month my suppliers respitory tech suggested liquid and they were there the next day to install everything. I use 4 litres at rest but if I get up and walk or do anything that requires effort, get out of breath very easily, so the told me to keep a stroller nearby and just turn it up to,15 litres which really helps. The supplier is very good and their respitory tech visits monthly to check. They change all the hoses weekly. The nicest part is I live in Canada so everything is free. I would recommend liquid to anyone who needs large amounts of oxygen. I agree with you that it helps in cooling the nose compared to the gas.

  4. Bob Wells says:

    Great Trailblazing Work Kim.

    Right now I’m just trying to get some tanks that aren’t as tall to ease in transportation. They make them. They are on the market. Still they won’t make them available. Just like they won’t make remotes for home concentrators.

  5. Jane Jarrett says:

    Thanks for sharing! I have been using liquid oxygen when I go out for 13 years. ( I use the concentrator in the house). None of my equipment looks like yours. (I think mine is old) I have never seen the ones you used when you go out. I have had an M6 in the back seat of my car for weekends away only. (I had to borrow it) I am glad you showed how you hooked up your tanks to equal 7 liters. I have been using the Helios Marathon. I have to beg my oxygen company to let me have some D tanks as a back-up. I am only allowed one at a time. I am not happy with my oxygen company at all. It seems as if they don’t want me to have oxygen.

  6. Valerie Dains says:

    Very imformative, I always wondered about how liquid worked, I was offered it a decade ago but was only on 2-3 LPM so I went w/ the compressed air tanks. Now that I’m at 5 LPM on exertion I probably should have gone w/ it. However in asking about it is not available here on the Oregon Coast. I may have to move to get it if I continue to require more. One thing I wanted to mention is if you use the swivel connectors make sure to have extra on hand. In the ten years I’ve been on oxygen I have had two fail and come apart. I personally like a straight connection. Thank you again for your video….breathe easy and blow out deep.

  7. Mary Helen Enriquez says:

    I have been fortunate enough to have liquid oxygen but am sometimes having to get more than 6 only on bad allergy days. It is interesting to see that you can use both but didn’t quite understand how to connect both to one.

    • Hi Mary…sorry that wasn’t clear enough. You can ask your provider for a “Y” connector and tubing to connect the two tanks together. They should be able to help you with that. Take Good Care…

  8. JUDY KRASOVEC says:

    I really look forward to you comments each week. This was very helpful. I did not have trouble getting it when I went on oxygen, they delivered both kinds by mistake.

    So I tried it but it scared the graphics out of me because they had just filled it and I guess I didn’t get it on correctly and it malfunctioned and all the oxygen escaped into my room. They told me to get a wooden spoon and poke in there to free up the ice crystals. I couldn’t see any thing except steam from the dry ice. I CALLED THEM AND SAID IT SCARED ME( as I was new to any kind of oxy) TO COME AND GET IT. I CALLED MINE R2D2! So I’m back with the bullet kind and hose around house. To work in yard I take a bullet and a25ft cord – just lay it down and work as far as I can. But I did just buy an inogen 3 to travel and to Doctors.

    • Hi Judy…I totally understand. The first time we got a tank it started screeching and let all the O2 in the house. My husband dragged it outside on our front porch because it was making us sick. Since then we haven’t had problems. It can be nerve wracking.
      Good for you for coming up with a solution that works for you!

  9. Marjorie Heintzelman says:

    My husband is on liquid oxygen because he’s on a constant 6 – we just went though the hassle of finding a new supplier – he was given a 2 months notice to find another supplier because the company he was getting oxygen from refused to supply it any more. The only place he could get it is over 50 miles away so they deliver 4 tanks every 2 weeks for him to fill his portable from and the rest of the time he has to used the concentrator. He’s been on oxygen over 7 years now and this is the third battle we’ve gone through!!!!! There are fewer and fewer companies willing to supply liquid.

  10. Bill says:

    Congrats on getting your LOX. I fought the same battle and eventually my supplier sub-contracted the task to another local supplier. These people are just great. It took me 6 months and 2 different pulmonologists sending Rxs to the supplier.

    My understanding is that hidden in Obamacare which hugely expanded Medicaid, are reductions to Medicare. These reductions include reduced reimbursements to suppliers of equipment and services. The problem was compounded by competitive bidding – which sounds good – that makes supplying LOX to Medicare recipients, a losing proposition.

    Some suppliers will go to extraordinary lengths to deny LOX. I talked directly to Medicare about the problem and a rep called a local supplier with me patched in to the call. The supplier simply lied saying that there was no liquid oxygen manufacturer who could supply it. Only that day 3 different local manufacturers told me that supply was no problem but they cannot supply it directly to the patient.

    Perhaps if we all contacted our Congressional representatives about the problem we might get something done.

    You can see many of the portables available here: http://www.chartindustries.com/Respiratory-Healthcare/Liquid-Oxygen-Systems/Portables/Helios-Portables

    You can often find “Marathon” portables on E-Bay at about $200. This will supply up to 6L/min and also demand at up to 3L/min.

    I do not agree with Kim that any portable machine (POC) will supply 6L/ min either continuous or pulse. I’ll explain in another post.

    • Eileen Lewis says:

      As I read the comments, I am getting more and more angry about the fact that we must fight for what we need.

      Bill,can you or someone who can explain the issue in a letter, compose a letter that we all can send to our congressmen.

      This is just not right.

          • Bill says:

            I don’t know about that, but you have a great idea and I’ll certainly contribute whatever I can. E.g. I can write to 2 senators and a congresswoman from NV. Right now you can’t turn the radio or TV on without hearing ads with long heartfelt pleas for people on MedicAid. What about the people who are actually paying monthly premiums and paid their entire working life to get MEDICARE – AS PROMISED BY OUR GOVERNMENT?

            I believe there are 2 main points:
            1. The payments to DME companies are so low that they have trouble covering their costs, so they are reluctant to supply LOX. In fact, they will actually lie to avoid it.

            2. LOX is the only way some of us can lead a semblance of a normal life. Gaseous oxygen cylinders that will last even a few hours are much too big for most of us to haul about, to say nothing of loading and unloading and carrying a spare. There are no portable concentrators that will supply more than 3 liters/min continuous and those that do must be wheeled around because they are too heavy to carry.

            The terrible thing about ipf is that it never gets any better so if you need 4 L to walk now, you’ll probably need more down the road.

            Here is another question that just occurred to me. If a DME supplier is the low bidder, should it not HAVE TO supply any items covered like LOX? It should not be able to pick and choose the most profitable items. (Though an economic benefit would be a better motivator)

            Please let me know what you think. I believe the moment is timely.

            1 other note – many years ago a congressman told me that they pay more attention to handwritten letters. I don’t know if that is still true.

            *DME Durable Medical Equipment

  11. Lola O'Brien says:

    Hello,
    I am Lola from NC. I was on O2 for over 20 yrs. I had a bilateral lung transplant 12/19/2016. I also had a terrible time getting liquid O2. I struggled up to the very end…I was so glad to return their(Lincare’s) delapitated, unkept equipment. I fought to get three portable tanks because I was in 8 liters at rest and up to 30 liters to walk. I would fill all three-use one up(it would freeze), use second one(while the first thawed so it could be refilled), then use the third(by that time-under 2 hrs the first portable would be thawed and able to refill). Lincare didn’t seem to care! I actually picked up one portable from a yard sale. It was literally an act of congress to get them serviced. The portables were hardly ever accurate. The reservoirs were junky-with no gauges. I was lucky enough to get a concentrator that went up to 10. What a fight just to breathe! I truly feel that I was one of the few people who lived long enough to require that much O2. They were just waiting for me to die. Having Medicare and the whole “competitive billing” crap was not a plus for my situation either.

    • Hi Lola…thanks so much for sharing with us. What a journey!!! So glad you were able to get a transplant and turn all that O2 back in. Yes it is a struggle. I know what you mean about the portables freezing. So glad you are free from that mess, and wish you the very best!!!

  12. Bill says:

    I sometimes think that some portable oxygen concentrator (POC) salesmen cut their teeth as used car salesmen. The internet is your friend. You can find operating manuals and sometimes repair manuals for free.

    The most constant canard is that pulse settings correspond to liters/min. Some manufacturers are absolutely up front about the meaning of their pulse settings. E.g. the Oxlife Independence gives the exact amount of oxygen in each pulse at each setting (Sequal does the same). Setting 2 gives 32 mL per pulse and setting 6 gives 96mL. So if you breathed 20 times in a minute (pretty fast) at 6, you would get 1920mL in a min. i.e very nearly 2L (2000ml) NOT 6L. Some makers just say that a setting is a setting never saying what it means.

    YOU HAVE TO USE YOUR COMMONSENSE. There are POCs that supply 3L/min constant flow. They are pretty big machines. When you add in the weight of the batteries they weigh about 18+ lbs. So how can a machine weighing a quarter of that supply 6L/min? Answer: They can’t.

    So unless you want to end up with a very expensive doorstop or worse, a serious heart condition be sure you can safely use your machine.

    If a salesman says that each setting equals 1 liter, ask him to put it in writing.

    You can sometimes get a 30 day trial but please educate yourself before you shell out thousands of dollars. Remember: buyer beware.

    • Hi Bill…I do know what you mean. I had an Inogen G2 that goes up to 6 lpm as a pulse dose. Of course a 6 lpm pulse was like 4 or 5 continuous flow. You are so right. It was great for me for two years, but then as a worsened it doesn’t work for me anymore. Thanks for sharing your expertise.

  13. Judy Norenberg says:

    Yes I to know the trouble it is to get liquid oxygen although I try to get it so I can still enjoy camping off grid. It seems like they don’t care if you continue doing what you like or not. For what we pay for insurance and what oxygen cost we should get what we want. We didn’t ask to have to be on oxygen to continue living. Thanks for your article.

  14. Betty Jean Cannon says:

    I also just stumbled on to your post. Very helpful info. I’ll look for you every week. Thank you

  15. M Zuger says:

    Thank you for the article. My best friend for over 30 years just passed from PF. She was diagnosed 5 years ago. Hers was from an allergic reaction to her work place. Sick building.
    Her biggest fight was with her air carrier. And the air industry as a whole. In this day and technology age why are the concentrators still manual!!! If someone can open their garage door from across the country via their phone… why oh why can’t the concentrators do the same! If you need to move.. whip out the phone up the air to load up the body and move… as they are now you move… stats go down walk to the concentrators up the lpm to move… your in a deficiency from the get go.
    At the end my friend was on 4 10 lpm. 2 y’d 2 y’d. 2 canulla in her nose. On bad days we y’d together M60 tanks with 15 lpm each. Yup that’s a lot of air up the nose! She was a fighter. When the air provider said they couldn’t get her higher flow tank regulators…. she went on Amazon and found/purchased them . When they said they couldn’t provide high flow conectors… Amazon had them. Just let me say I’m not pushing that surch engine… the equipment is out there. Be your own advocate. Fight for every breath. Don’t take their “no” as gospel!!!
    She Was a candidate for a lung transplant. Her only barrier was her weight. It was hard for her to do being on 40 mg of prednisone and 40 lpm of O2. Seattle lung center wants the perfect patient. Not on O2 and perfect weight. Their Doctors words. Stanford lung center takes the “higher” risk patient. Their Doctors words.
    So be your own advocate. Fight for every breath. Never take no as the final answer…. from anyone!

    • M Zuger, Thanks so much for sharing your experience alongside your best friend. She was so amazing…brave, resourceful and never giving up. What a good role model for us. I know you must miss her so. What a blessing you were to her on this difficult journey. Thanks for your encouragement to all of us!

  16. Judi Zoboli says:

    I was diagnosed with IPF in May 2005 and given 2 years to live. Well, I’m still here, though very limited. I am on 5 Lpm but it’s really not enough. I’m 75 and living alone and always convinced myself that my concentrator and portable tanks would simply stay permanent until I passed. To see your video, It really frightened my to death seeing what may be in my future. I don’t go to a pulmonary doctor and my trusted DM here in Merced understands me and just checks my vitals once or twice a year. I am so scared that things won’t remain the same until I pass.

  17. Bill says:

    OK here is a start to my proposed letter. Feel free to critique it. Kim is after-all a pro, I’m am an engineer and you knw how badly they write.

    Dear Senator
    My radio and TV are running expensive ads asking that Medicaid be expanded. I am writing for those forgotten people who pay premiums every month and who contributed their entire working lives to Medicare. Because of cuts to durable medical equipment suppliers, some essential services are either very difficult, or impossible to get.
    People with lung disease often need more oxygen than portable machines or portable gas cylinders can supply, so that they can lead a semblance of normal lives. The solution to this problem is simple: Liquid oxygen often known as LOX. Because of Medicare cuts suppliers are very reluctant to supply it. Even when suppliers go to heroic lengths to obtain it, we know that if we survive the contract length, the next supplier may deny it regardless of the doctor’s Rx.
    Competitive bidding has made the problem worse as suppliers naturally want to supply equipment and services that they can make a return on. I certainly don’t blame them for this as I don’t want suppliers going out of business. However I do not believe the low bidder should be able to pick and choose what he supplies; it should be all or nothing.

    • Thanks so much Bill. I love the way you write, and you have such good information. I have a PF friend who has some political connections. I’ll run your letter by him. I so appreciate you getting it going? We’ll all get this done together.

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