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Let’s talk about supplemental oxygen
Welcome to the newest sub-forum in the Pulmonary Fibrosis News forums. I frequently see questions about oxygen in the Forums. Now we have a sub-topic area specific to the use of supplemental oxygen. Who has the first question?
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36 Replies
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I don’t have a question, but a recommendation. I was diagnosed almost 5 years ago and have mostly done well. I take Esbriet and the progression has been slow until recently. So far, I have used Boost oxygen as a supplement. I discovered it on a trip out West at altitude and found it helped. I have recently experienced an acute exacerbation of the IPF and at some point will need more consistent oxygen. But so far I have found Boost oxygen to be very helpful when I need to recover from activity quickly. Hope that helps.
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what is boost oxygen?if I might ask
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I’m using Boost Oxygen when I play golf and it seems to help so far.
Mack
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So glad you are adding oxygen sub-forum. I wish we had this 2 1/2 years ago when I first started using oxygen. It would be great if we could use this to give each other hints and help on issues we have with oxygen use. Ideas – your favorite tubing and cannula and where you get them. Supply company you use and is it good or bad. How you deal with getting to dr. appointments with oxygen. How often you change tubing and cannula. Help with nose soreness, etc. You learn so much more from users than from doctors.
Look forward to hearing lots of helpful advice.
Peg
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Peg, i have used Vitality Medical online fir several years for all my supplies. My wife prefers the Hudson brand cannulas because they are “softer”. I use Salter brand. They are 70-80 cents each when you buy in bulk, so changing frequency is not a big ticket item.
I bought two wheeled POCs from them when insurance did not provide. Vitality also has allthe filters, tubing, fittings, and humidifiers for most brands. Easy to use and very helpful
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I have been using o2 for over a year at night 3lt. I change tubing around 2 wks. I change cannula every wk. I get My supplies from the VA There are great. I also use o2 when active I use the small pony bottle. That can be a pain in ### .I hate this disease not just for what it is doing to Me, what it does to My wife and family They see Me slowing down, They try hide the pain They feel, that is hard on Me.
My best to All
ONRE
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Also VA supplied. Not PF but COPD stage 4. 9 yrs on O2 24/7, air hose from home concentrator 50ft and changed 3 years ago. The hoses are a serious trip hazzard so I wrapped them with alternated color, black & red, for visibility. I used the spiral type protective wrapping used on scooter and motorcycle cables. Air hose fits perfectly and it takes the coils out of the tubing. You can step on these red & black hoses without crushing the tubing inside. Red & black were only colors available but they now lie absolutely flat and are very visible.
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Hi David, I was diagnosed a little over 5 yrs ago. I don’t take meds and don’t use O2 much . My IPF kicked in bad since last December. I’ve lost 40 lbs and have no energy and simple tasks like taking a shower kills me with low blood oxygen and high heart rate on the oximeter. I use the VA and a civilian pulmonologist. No complaints on either. VA linked it to jet engine exhaust when I was a Crew Chief on a F-4 Jet Fighter in the USAF. Being there is no cure or reversing, I was curious about your activities. I’ve become a Lazy Boy on the recliner . Thx
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I’ve been looking for a reasonably priced continuous flow POC up to 4L. Any insights? Thanks…
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POCs are not continuous flow and only go up to 1.5 ltrs. The numbers on the machines do not correspond to liters.
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Hi – there are a couple that offer genuine continuous flow but hard to find…
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Steve,
I have lost track of where in the world you are at the moment. The ones that will do continuous flow and are portable are quite heavy. They are only “portable” because they have wheels.
Sam…
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My biggest fear is telling my pulmonologist that I get SOB and fear that she will put me on O2. However, I use Boost and find it help. I know some day I will need O2 but not now since my SOB is not in a critical stage just minor and I recover quickly with Boost. I encourage people to go to Boost’s website because at time they have good offers or use Amazon too. I am thrilled that we now have a n O2 forum.
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Just make sure to use an oximeter to check your oxygen level and keep it in the 90’s so you don’t damage your heart or lungs. If you need oxygen it will make you feel so much better to use it before you cause more issues.
Peg
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Use of oximeter is very important. I used the spiral mine several times a day for varying oxygen need.
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I agree with you Bryan! There’s also a bit of an assumption from society that our convenient technology devices (ie. AppleWatch) can accurately track our 02 levels. While certainly better than nothing, my Pulmonologist recommended I use my AppleWatch 02 tracker to cross-reference my oximeter reader only, but rely on the oximeter more. They are super cheap to purchase, even at Walmart. It’s really important to see the “data” and be able to correlate it to how we feel.
Thanks for sharing.
Char
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Hi John. Can I ask why you fear being prescribed oxygen?
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Basically I do NOT want to wear any cannula and carry around an O2 pack. If things get worse then I will do it but not now since I am not at that point.
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Thanks for responding. It is my experience that there is no correlation between shortness of breath and oxygen saturation. Saturation levels will drive the need for oxygen. If you have a pulse oximeter check you oxygen saturation when you experience a SOB. If it is below 88% you should be sharing that with your care team.
Your care team may prescribe pulmonary rehabilitation for SOB. When I first went to pulmonary rehab they told me they would teach me to breathe again. I laughed but they were correct.
Sam …
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John, I was exactly like you not wanting to be on oxygen. I was diagnosed 6 yrs ago and I’m 78. Since Christmas (12/24) I noticed I had felt more SOB. I have an Oxygenator next to my recliner where I watch TV or read . I put the cannula on and relax giving my lungs and heart a break. I also have a portable which I took on my flight from Ca. to NYC. I am also suggesting that you use your Oximeter more often to see the results of using oxygen. Don’t put it off but the good news is …you can pull it off Anytime you want. Go Get it !
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John, what samuel-kirton is saying is totally correct. I also suggest you find a high quality pulse oximeter, especially one that does well measuring with activity. I use the Masimo MightySat oximeter. It is essentially the same as the medical-grade ones used in the hospital and seems to work well with exercise. It also connect via bluetooth to a smart phone so you can get a reading when outside and such. It is a little expensive, as are the other better quality ones. But it is an essential device for someone with PF. I got mine new on ebay for much cheaper ( 180.00 – normally 250.00) than you’ll find on their website or Amazon.
I felt the same way as you about not wanting to wear O2 out in public but I’m starting to get used to it and isn’t such a big deal. I only need it for going on walks with my dog around the neighborhood and moderate walks up hills and such. If you can, you could ask your pulmonologist to get an exercise treadmill oximeter test – which can determine how much oxygen (or if you need it at all) you need with exercise. The exercise is critical part of helping improve your cardio-vascular conditioning so that you can better get oxygen to your organs and such – also keeping your oxygen level up will help prevent getting pulmonary hypertension – (common complication of people with pulmonary fibrosis)
Good luck! -
I’ve been through severtoximeters and I find the Zacurate brand to be most consistent and has readings in line with the Pulmonologist. Dry reasonably priced.
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What is the quietest POC? Insurance provided a Rhythm POC and it is loud to me. I have a used OxyGo Next ( supposed to be the same as the Inogen 5) that is quieter but still loud. I am sensitive to noises and I hate the sounds of both concentrator and POC. And our house layout doesn’t allow for concentrator to be very far away. So guess I better ask what anyone thinks is the quietest concentrator as well!
I appreciate the forum here and thanks in advance for suggestions!
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I use O2 24/7. I have a large generator for in-home and yes, it’s noisy. We have it set at 2 1/2 most of the time. I just got an Innogen 6 portable and I use it at 3. It will be much easier than lugging a tank with me when I go out. We’re getting the extended battery so we don’t have to watch the clock. I also keep a tank with a short tube and cannula attached in the bedroom since we are prone to blackouts in the summer and I can get hooked up quickly. We just bought an emergency solar generator for longer term outages. I hate it all but I’m hoping to hate it for a long time. What I hate more is the nasal irritation and nosebleeds. My dr just gave me an oil called Ponaris that I can use in my nose but I’m not liking the burn on raw tissue. Sometimes I use Ayr saline gel. Trying different meds to stop the runny nose. Hoping for a stable report after my October checkup. Been a rough few months since I got pneumonia and ended up on O2.
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<div>Here are some of my tips -</div>
I have had PF for about 2 years now, I am 69 and listed for a transplant. I am on level 10 resting. I have bone from level 4 to 6 to 8 to 10. I have 5 blood O2 finger meters, so I have one where ever I’m at so not to have to carry one around at home or work – I still work most of my week full time. I have about 24% good lung tissue left. So I’m on supplemental O2 a lot.
I can’t use a nose Cannula as my nose gets stuffy and I can’t breath through it. I am a Vet and have Warrior as my O2 supplier. I won’t sweat a mask as it fogs up when I exhale. But I found oxymask and it is wonderful, it is a mask but it has 4 large openings in it that lets my exhaled breath out. I catch the O2 breathing in as my inhale breathes all the O2 in. Also I can talk talk and talk in the phone with them on, I can drink liquids with a straw through the side holes.
Warrior supplies them as well as Norco to me, but you can buy them online too.
In my car I have a portable pulse oxygen unit and a Y connector to a tank laying on my back seat floor behind the drivers seat (actually 2 there – one as a spare). I get 5 liters from the portable then set the tank on 6 so I get 11 when I drive, also the tank O2 pressure through the hose pushes the portable O2 out to my mask very quickly.
With the long hoses I have at home, I have 4 floor concentrators at home all level 10, I had my wife buy short round baskets to coil the long hoses in when not using them – I go from hose to hose in my 4 floor level house.
I use a small portable tank going up the stairs from my den to the too floor at night to go to bed. Then I turn on my top floor concentrator on to sleep.
I keep my top floor level 10 oxygenated in a small weight room next to my recliner that I sleep in in a bedroom, I didn’t want to trip on a long hose during the night so I drilled a small hole next to my recliner through the wall into the weight room for the supply hose. Then I attached a 25′ hose to use that concentrator on the top floor.
I am a belly sleeper and in a bed will roll over to my belly during the night and that compresses my lungs so I bought a recliner to sleep in, put a 2″ memory foam pad on it and a sheet over the pad, then bought a electric blanket to sleep under. My recliner sleeps the best I’ve ever had, including all the beds I’ve ever slept in and it keeps me on my back. I sleep in another bedroom than our master as I to to bed later than my wife and the noise coming to bed, especially when I had my level 10 in the master bedroom would always wake her up.
Before getting listed, when I could fly, I just use my portable pulse supplemental 02 even though it only goes to level 5. I found if I relax and get my heart rate down it raises my blood O2 level at lower supplemental O2. I look forward to the days after double lung transplant where I can breathe again and fly again only needing my own lung oxygen.
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That’s an impressively thorough system, John.
A question I have for the group here is this:
I want to try a light oxygen TANK for walk-around use. I get good value from the Inogen G5 concentrator for assistance with weight workouts, but for walking around, it’s too noisy and heavy (5.5 pounds), and it provides very limited oxygen–just a little over 1 liter/minute on the maximum setting of #6. I want to experiment with higher rates.
Anyone here with experience to report or suggestions to make?
–Stewart
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Hi Stewart,
Do you have an oxygen supplier? If so, arrange a visit to the local office and try some of the tanks for both size and weight. I typically used E tanks when I walked, but when I needed something with a lower profile, I would use a D tank that could be slipped into a backpack.
Learn the volume of any tank you use. With that info, you can divide the volume by the flow rate to give you a good estimate of how long the tank will last.
Sam…
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Hi Stewart,
I also primarily use a concentrator (Respironics SimplyGO) but find it heavy when moving around the house and I can still get sufficient 02 needs via concentrator or tank. I advocated for a D sized tank, which in my province is covered by provincial health insurance, and ordered a backpack for it to carry out and it’s been a game changer! For longer trips somewhere of course I use a concentrator but it might be worth asking about the D sized tank and backpack for what you’re mentioning. Let us know if you have any other questions!
Charlene.
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Thanks, Sam and Charlene…
Indeed, a D or E tank is what I’m looking to experiment with. For some reason, the medical oxygen suppliers around Marin and Sonoma counties in California say they won’t handle “portable” oxygen tanks. Your experience inclines me to insist with them.
I’m also looking into a possible workaround with welder’s oxygen tanks for oxy-acetylene torches. Reportedly, their oxygen has to be quite pure to work in the torches. I’ll see if I can get their tanks to work with my medical regulator, or if I can get my tanks filled at their shop. I’ll report here on what I learrn.
–Stewart Brand
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Stewart,
Sorry, but are you on Medicare? I do not think I have ever heard of a medical oxygen supplier who did not provide tanks. Perhaps you have equipment from a DME provider. I would recommend asking your pulmonologist who they know in your area who supplies medical-grade oxygen.
I had never considered welding tanks, but I would also run that by your care team before pursuing that approach.
Sam…
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I would love to hear from folks who have Medicare and was able to get a 3nd concentrator covered.
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Hi Ellen,
Before I reply, can I ask how much oxygen you are on?
Sam…
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Not 3rd but 2nd concentrator.
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When your oxygen gets down to 79 to 82 you will really want that oxygen. I’m on 24/7 and still struggle at times from SOB. MY Inogen is only good if I’m sitting still or doing very little movement. Anything else and I have to turn it up to a 5 or 6 setting which really shortens the battery life. I require 3 to 4 liters as my normal on my oxygen concentrators. My IPF is from Ankylosing Spondylitis and Addison’s Disease complicating treatment options. Don’t be cautious of using oxygen if you really need it. I’m quite sure I would be dead without it. I do have limitations but I work around them. Chest pains, headaches and SOB are all part of this horrible disease. The headaches and chest pain are my warning sign I need my oxygen. Good luck on your search for oxygen supplements.
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Why does PFNews tell us that “Let’s Talk About Supplemental Oxygen” was posted 9/29/25, when neither its first nor latest post was on that date? Valuable topic, but accuracy and honesty please.
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Hi jross,
If you scroll through the message string, you will see replies in the string from 9/29/25 that were in response to someone else’s reply. They are the latest reply but not added to the end of the string.
I hope this helps.
Sam…
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