Options for Supplemental Oxygen at Home

Options for Supplemental Oxygen at Home

Just breathe, passionate help for the PF journey
Over the last two-plus years I have become an unwilling expert on the ins and outs of supplemental oxygen.

When I started using supplemental oxygen I knew next to nothing and found it very hard to get the help and information I needed. I’ve learned a lot and would like to pass on what I’ve learned to you. I am sharing based on my own experience and realize what I share may be incomplete. I’d love to get your input on this topic!

The use of supplemental oxygen must be ordered by a physician, approved by insurance and offered by the oxygen provider. Today I’ll be covering different types of oxygen I’ve used at home, and next week I’ll share options for using supplemental oxygen away from home.

Options for supplemental oxygen to use at home:

supplemental oxygenGas cylinders : Oxygen can be delivered to your home as compressed oxygen gas. This compressed gas is stored in steel and aluminum tanks or cylinders. Larger tanks are stationary and used at home. The top of the cylinder has a place for a “regulator.” This is a device that regulates, or controls, the air flow coming from an O2, or oxygen, cylinder, usually between 1 and 15 liters per minute. Your oxygen provider will deliver the amount of tanks or cylinders you need on a weekly or biweekly basis.

Oxygen concentrators: Oxygen concentrators are also available for home use. There are “low flow” concentrators, delivering 1 to 5 liters per minute of oxygen, and “high flow” concentrators that go up to 10 liters per minute. An oxygen concentrator is an electrical device about the size of an end table. It concentrates oxygen in the air by removing nitrogen, and then concentrates that oxygen, and sends it back to you to breathe through a nasal canula. This method is less expensive and easier to maintain, as it requires no refilling of tanks.

However, oxygen concentrators may give off heat and are noisy, and they may significantly increase your electricity bill. You will still need a back-up source of oxygen in case of a power failure, so make sure you have gas tanks on hand to use just in case. A humidifier bottle can be attached to the concentrator to add moisture to the dry air delivered by the concentrator.

When you need more than 10 liters per minute, you can hook two concentrators together with a Y connector to deliver more liters per minute. Check out my video below to see how this works.

Liquid oxygen: This is made by cooling oxygen gas and converting it to a liquid. 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. 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 had to fight for three months for my oxygen provider to be willing to deliver it to me, and another two months to bring me portable oxygen containers to use away from home.

Liquid oxygen tanks deliver only 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. Check out my video to see how this 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 the patient requires higher levels of oxygen.

Portable oxygen containers (called strollers) hold more and weigh less than gas cylinders, and are easier for me to use when out and about. I’ll talk more about these next week.

Insurance coverage

Supplemental oxygen is very expensive. Most insurance plans cover this cost, but some do not. I’ve had both experiences. My first provider did not cover supplemental oxygen in their individual plans (which I had). They did cover it in their group plans. I took my insurance company to the state insurance board, but lost. I had to buy my own equipment. My current insurance company covers the cost, and I’ve had no problems with them. Please check directly with your insurance company about what your policy covers.

I’ve created the video above to show you my equipment so you can see up close what the options are. I hope it is helpful to you. Check back next week when I share different types of portable oxygen possibilities.

I’d love to hear from you! What was helpful for you about this post or video? What other experiences about using supplemental oxygen at home could you share with us?

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

***

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.

29 comments

  1. Esther Landers says:

    My husband has ipf. His oxygen concentrator and his pic only goes to 5L. He is ok as low as sitting . But when he goes out he can hardly walk any distance or do anything with pic at 5L. Started on oxygen last nov 2016 and dr did order for 2L. Not near enough. What kind of tank would help him to get around. Thanks for replying.

    Does he need higher L and what kind of tank would help him when he moves around. Thanks for replying

    • Hi Esther…thanks so much for your comment. I would encourage you to have you and your husband go in for an appointment with your Doctor. Describe exactly what you are seeing. He or she will probably do a six minute walk test to see what his oxygen needs are when walking. Sounds like a high flow oxygen concentrator may be what you need (it goes upto 10 lpm). His Doc will need to write a prescription for a high flow concentrator as well as portable tanks or portable oxygen concentrator when leaving your home. Check my post next Tuesday where I’ll be sharing about different portable oxygen solutions.

  2. Lorna says:

    Yes thank you very helpful. Wish I had seen this when I started oxygen 2014 I do not need to combine 2 yet but I wondered about how that would work. I don’t quit understand about liquid oxygen. I have the tanks for back up or when I do my treadmill.

    • Lorna, so glad this post was helpful.I’ve had to figure it out myself, so I am happy to share what I’ve learned with others. Next week I’ll be sharing about portable oxygen solutions, and will share a little more about liquid O2 then. I’m glad you’ve got tanks for back up. Thanks for sharing with us!

  3. Bruce Williamson says:

    Thanks for the info. I’ll be getting the swivel hose connectors. I didn’t know about them. Regarding the dry air from the home concentrator, I use the humidifier 24/7 and that helps a lot. I noticed you didn’t have one attached to your unit. I use pre-boiled water because we forget to get distilled water when we’re out. The humidifiers develop a mineral type coating on the inside of the humidifier over a few month period so I just replace the humidifier at that point. They are provided free by the O2 supplier. I also keep either a large M tank or an E tank on a roll cart at several places in the house I frequent: next to the bed, next to the TV recliner, next to my kitchen chair and next to my office chair. That way, when I have the inevitable cough fit, which makes my SAT level fall, I have an extra O2 tank/cannula which I hook up and turn on for more O2. At each station I also have a box of tissues and trash can. Finally, I have one more E tank on a cart, always ready to go, located in the kitchen area in the unlikely event that one of my other tanks goes empty when I need it. My wife can rush over to it and bring it to me if needed. For the car, there’s a entirely different set of O2 tanks for backup and an Inogen G2 POC. That’s a different discussion! Thanks and blessings! Bruce

    • Bruce…thanks for the tips you shared. Very helpful! I don’t know why, but I have trouble breathing with the humidifier bottle. When it is attached or on a humid day breathing is harder for me. I’m not sure why. I love the way you have O2, tissues and a trash can at different stations throughout your home. Brilliant! I have an Inogen G2 also, although now that I am on 8lpm, the maximum 6 pulse doesn’t work for me when walking around. I keep it in my truck as an emergency back-up. Thanks so much for sharing your wisdom and experience with us! Blessings to you too!

  4. Betsey Clopine says:

    Thanks for your wonderful and comprehensive presentation about using O2. I’m a bit confused as I thought the numbers on the concentrators were just setting numbers and not liters per minute. I was told that the tanks are actual lpm so not to compare those numbers with my POC numbers. Also, softhose.com sells wonderful long, flexible tubing that lies flat on the floor and does not kink. Wonderful material. They also have an inexpensive valve that attaches to the tubing which allows one to adjust the flow level from needs at sitting to greater needs walking across the room.

    • Hi Betsey…Thanks so much for your encouraging comment. I’m glad my post was helpful. The numbers on the tank are definetely lpm numbers. There is a difference between the numbers on a portable oxygen concentrator (POC) and a continuous flow concentrator, gas tanks and liquid oxygen tanks. The portable concentrators give a puff of air when you breathe, as opossed to oxygen being delivered continuously. That means 6 lpm on a POC is not as strong as 6 lpm using a concentrator, gas or liquid oxygen. Thanks so much for the heads up about tubing by softhose.com. I tried to order from them once and they were out, and I forgot to try again. Thanks for the reminder! The valve sounds great too! Thanks for sharing your wisdom with us!

  5. Esther Landers says:

    Thanks for your reply. They originally done a 6 min walk over a year ago and his breathing has got a lot worse so maybe they need to do it again. Is there portable tanks tthat go higher than 5 L. Using the pic he has he has to get a scooter to do anything. I will watch for your next about tanks

    • Thanks Esther…Yes, they need to do another six minute walk test, pulmonary function test (PFT) or even a CT scan. Yes there are portable tanks that go higher than 5 lpm. Check in tomorrow for my next column about this. Your hubby is blessed to have you by his side!

      • Linda says:

        Hi Kim,
        I was diagnosed with pulmonary fibrosis in September 2015. At the time I was 56 and working full time, over the course of 18 months my fev as gone down at each lung function test starting at 92 that Sept down approx 6% each test until December when it was 70%. My lung disease is caused by numerous rheumatoid nodules throughout my lungs between 4mm and 10mm big with extensive scaring. I know struggle with my breathing 24 hrs a day just getting up from the sofa and readjusting my pillow can leave me breathless,sometimes I wake up feeling as if I’m suffocating and then constantly coughing. I know you were discussing oxygen but my consultants reply to anything I ask is your guess is as good as mine so won’t explain the lung function tests to me and my gp doesn’t want to alarm me by telling me something that may be upsetting. I’ve asked if oxygen would help be I’m not having any communication from them. Is there anywhere i can find information? If this isn’t appropriate for your post then I apologise but I do feel very alone. Linda

        • Hi Linda…I’m so glad you left a comment about your lung condition and the struggles you are going through. It is my opinion that based on your symptoms you should definitely be using supplemental oxygen.

          I don’t know why your docs are not being very helpful. There are other tests that can give you much more information and will show that you need supplemental oxygen. Some of these tests are the six minute walk test, pulmonary function test (PFT), spirometry, and a CT scan.

          I encourage you to demand a referral to a specialist and/or the closest hospital to you that are specialists in lung disease and do lung transplants.

          I’m so sorry you are so alone in your fight!. I and this community are right here with you. Feel free to print this column and all the responses and bring it into your Doctor. You will feel so much better once you are using supplemental oxygen. Don’t give up!!!

          • Linda says:

            Thank you so much Kim for replying, I will print this off and show my consultant. I’m going for a lung function test next Monday so see what that brings up. I have mentioned about the 6 minutes walk because he told me about that back in November but still not forth coming.
            Can I ask, when I saw him in early March I mentioned about going to Italy on holiday and the flying,he said only I can make that decision. So I’ve booked for July is there anything I need to prepare for or to ask about? Thank you already Kim, Linda

          • Hi Linda…yes, I’m so glad you are getting the lung function test. That will give you some good information. As far as flying…you need his input to make sure you’ll be safe flying. Here’s what it is like in the US, so may be different for you. They allow you to take a portable oxygen concentrator on the plane with enough batteries to last twice the amount of the flight time. Check out my column and video tomorrow where I show you how it works. They require a Doctor’s letter saying it is safe to fly. Check your airlines website and see if they have information about “flying with oxygen”. They usually give guidelines and tell you what types of oxygen they allow on the plane. In the US they don’t allow gas or liquid O2, only the portable oxygen concentrator. It may be different in Europe, so check with them directly. You need twice the lpm on the plane that you need at home when sitting. So for me, when I was still able to fly, I brought my Inogen G2 on the plane which goes up to 6 lpm (pulse dose) to stay above 92% saturation. This was fine, because at home using 3 lpm kept me above 92% while sitting. I love that you are going to Italy on holiday…but just make sure you’ll be safe flying. I own my portable oxygen concentrator (because my insurance wouldn’t pay for it). It is pricey, but you can also rent them. Let me know how it goes. You are worth sticking up for!!!

  6. I found out the same way trial and error on 02. I now have 4 liquid tanks, 1 they so call portable ( which is half the size of the normal liquid tanks) to refill the small refillable portables that go up to 15 lpm. I like the liquid since it keeps me saturated better than the gas, i also have a 10 liter concentrator which i use at home when i am running around the house. I am still working some what so the portable liquid works great to get out and about for a few hours. I also have E tanks so when i have to travel to UCSF i fill up my liquid portables, take my concentrator with me and some E tanks cause the liquid tanks will run out they also will dissipate. We usually stay overnight for appointment the next day so i use the concentrator at hotel liquid which is left to go to appointment and gas from E tanks to get home. I am on 2 to 4 liters at rest and 8 liters or better on exertion.

    • Hi Douglas…you and I have the same routine…Awesome. I go to UCSF too, and we usually spend the night as well. I have a small liquid tank in my car too that lasts the trip in the car, as well as filling up the portables. Check out my post tomorrow where I show it. Thanks for your comment!

  7. Esther Landers says:

    Thanks Kim. If you don’t mind my asking what L do you use at home and when you go somewhere. My husband doesn’t go much maybe church and to eat because he struggles so much with the 5 L and says higher L will probably not help him

    • Hi Esther…I use 7 1/2 lpm at home when sitting or walking around a little. When I go out I use 8 or 10 lpm. The higher level of oxygen helps a lot! Tell your hubby hang in there…and you too Esther 🙂

  8. guy anderson says:

    Great Morning Kim Just one comment I use the 10 Liter concentrator If you have a Garage you can place it out there to cut down on the noise and heat only problem is the garage get warm and you have to clean your filter more often been doing this for two year now problem have a great day. Ipf going on 7 years.I wish i could get the liquid for outside uses just have to learn to adjust.

    • Thanks for your great comment Guy. That is a wonderful idea! I wish I could do that myself. We have an unattached garage a ways away. I know your great solution will benefit others who might not have thought of it. Wow…7 years, that is hopeful. Sorry you’re not able to get the liquid oxygen. Darn! You have a great day too…and thanks for sharing with us.

  9. Eugene hulker says:

    I HAVE INSTALLED A CONCENTRATOR IN MY VEHICLE USING AN INVERTER 1000 WATTS AND HOOKING IT DIRECTLY TO THE BATTERY. it was hard to find someone to install the inverter so you must check around. car dealers do not want to help. IT SEEMS TO WORK PRETTY WELL AND SAVES A LOT OT OXYGEN TANKS. I FEEL NOW I CAN TRAVEL A DISTANCE WITHOUT FEAR OF RUNNING OUT OF OXYGEN. I STILL TAKE SUFFICIENT OXYGEN TANKS TO ENSURE I CAN RETURN HOME SAFELY. EXPERMENTING AT THIS TIME to see what adjustments must be made.STARTED THIS MONTH, BUT OXYGEN FLOW WORKS.

  10. Don Daly says:

    My supplier who just took over my old oxygen supplier has decided that they will no kinger supply oxygrn as of the 30th of June, problem is that they stopped supplying as of the 16th of June. The owner has taken it upon himself to not supply me with liquid oxygen because I store my 21l reservoir secured in the back of my car. I have stored it in my car since 2012. He’s claiming that this is dangerous aND won’t let me do it. Instead he’s offered d cylinders which last 1 1/2 hrs. I used them when I first started out but because of my active out of the house lifestyle we were exchanging 36 a week. Which is why the doctor, myself and my supplier decided on liquid oxygen. I can go 4-5 hours on 3-4 continuous. Having it in the back allows me to go off for longer hours. We tried taking 2 on a,long trip, it didn’t work
    POCs so not deliver the oxygen on a continuous for more than 30-45 minutes. Even an hour is worthless.
    Dealing with this person had caused me to feel that I am being made a,prisoner in my own home.
    Anyone else have the same problemme with suppliers. Does anyone have any actual regulations concerning liquid oxygen stored in cars. Not the oh its dangerous but actual code from a,governing authority. Thanks

    • Don,
      So sorry this is happening. I had some trouble with my supplier initially too. I have been told by two people with my supplier, that as long as the tank is strapped securely all the way around the backseat with a very secure strap (not a bungie cord, or the seatbelt) that it is safe. I have one in the back of my car too. The fact that many suppliers tend to leave out is that carting around those gas cylinders in our car are also very dangerous if they are not securely held in place by straps. They can turn into a “missle” if there is an accident and the tip of the cylinder is cracked or knocked off. My son is a Physicist, and when he saw one of those rolling around in the trunk he refused to get in until it was securely strapped upright to the seat. He pointed out that they are chained to the wall in hospitals for this very reason. I would fight this and keep working your way up the chain. Fight! Here’s a column I wrote about this. https://pulmonaryfibrosisnews.com/2017/06/27/pulmonary-fibrosis-patient-shares-tips-getting-liquid-oxygen/

Leave a Comment

Your email address will not be published. Required fields are marked *