-
Supplemental Oxygen Questions
-
Hello Everone, I am new IPF . What is the average monthly cost for supplemental Oxygen?
-
Hi there, I have been on supplemental O2 for over a year now. Diagnosed with IPF and PAH and using O2 concentrators when home @ 8L/M during the day and 6L/M at night. Have very little use of O2 tanks. When I’m sitting and driving I use a 6L/M pulse unit that works well. It is an OxyGoNext unit. I can’t imagine the hassle with tanks. I have my air tubing from the concentrator hung up out of the way with some little homemade hangers that allow me to have a day set up and one for night when sleeping. Keep as active as you can be.
-
@richardguerard
Rich, my Anthem Blue Cross and Medicare cover most of the cost. My cost is less than $25 /mo. I lease all the equipment. I do have 5 small O2 tanks here at the house for use when I need a constant flow of O2 instead of the pulse flow from my POC.
-
Marianne, in regards to your BP being erratic, perhaps it was your anxiety over doing the 6 minute walk test that raised it so much. I think most people have heard of “white coat syndrome” where you are reacting to being seen by the doctor, worrying about what they will tell you about your diagnosis or having some sort of test done. You might want to monitor it yourself at home under more normal circumstances. I wish you luck on finding a company that will work with you about your tank needs. I feel very lucky to have one that is very easy to work with here in VA. It really means so much to get the help you need without a struggle.
-
Hi, I am new to the forum and I have recently started on Oxygen, my prescription is for 2LPM as needed. First of all I am in Australia so our health system is probably a little different to others,but basically I was provided with a home concentrator but nothing portable. I would like to get a POC so that I can continue with my daily walks and I have been reading all the information on this forum and on the web plus I have talked to some providers and am getting so confused. I have gotten conflicting information as to whether the small units would be sufficient for me or not. Ideally I would like to get an Inogen 5 so was wondering if anyone would know if that would supply enough oxygen for my needs. Thank you very much , this forum has been a tremendous help to me and I do appreciate the kindness and support of everyone.. It means a lot.
Elizabeth
-
Hi Elizabeth
I am in France so my supplies are vastly different to the USA as well. I get what I want and what I need no problems, just have to ask.
To my mind the bigger the portable concentrator the better as you can usually get further, bearing in mind that to my knowledge no concentrator seems to supply more than 3 ltrs no matter what number the dial says. Ask for a back pack, I reasily got used to the weight as I had a double battery and could quite easily take my dogs 5kms then.
Now I have two back packs that take liquid O2 filed from the huge cylingers at home, they both go up to 17 ltrs, need 2 in my wild and wooly area as everything is so far between.
All the very best on your journey with this terrible disease.
Sue
-
@lizzie
Elizabeth –
From what I understand most of POC go up to 4 or 5 liters. There might be some newer units that go up to 6 liters. In the US if you are on Medicare as primary insurance you can rent an older POC unit. If you want a newer model, you must either rent it yourself or buy it outright. They are great for walking and exercise but with the battery pack many POC units in the states are 5 to 7-8 lbs. I was told that by one oxygen supplier in Ohio that person needed to be prescribed oxygen 24/7 to qualify for a POC. I am not yet on oxygen 24/7 and I qualified for a unit. I am not sure what brand unit I am getting until it arrives. I am still waiting to hear back from oxygen company that it has arrived at their facility. My oxygen supplier does not keep POC’s in stock because they are expensive and I assume many patients most go with the gas cylinders or oxygen. My doctor prescribed the POC because I exercise at the gym and like to take long walks. It is much more convenient that pulling a large tank of oxygen behind you on a cart. I also have the smaller cylinders that are worn either on a backpack or a shoulder harness. Hope this helps.
I know someone from overseas recently purchased an Imogen 5 or 6 POC unit.
Marianne
-
Karen –
Thanks for the note about BP. I do monitor BP at home. My BP is usually pretty good at home and at the doctor’s office. Not sure why it was so high that day. I did not know I was doing the 6 minute walk test until about 20 minutes before I did it. Originally, my doctor was booked solid until the following month for the 6 MW test. They had a few people cancel that morning so I was able to do the walk right behind my PFT and before my blood work. I have blood work – liver panel – every 3 months to monitor my liver because of taking Ofev. So far liver panels have been fine. I have PFT and see my pulmonary doctor every 6 months. Also, see my PC every 6 months instead of once a year. Hope you are having a good day.
Marianne
-
Hi! We’re preparing to buy a 10 litre continuous flow concentrator since my husband needs to switch to liquid oxygen… the POC doesn’t give enough oxygen. Since insurance will only pay for one, we’ll use it for the liquid and his pulmonologist is writing a prescription so we can buy a continuous flow for home and use the liquid for errands, hiking etc. My question is does anyone have a 10 liter continuous that they recommend? I know many people use Inogen, but they only go up to five liters and he needs 10.
And does anyone who owns one have any advice for maintenance, etc? Thanks so much!
-
Hi Jill
I have , a Caire Hi-flow liquid content which go up to 15 ltrs , the other is a companion T P/N 775499-B, also up to 15 lts.
At first the filling up is a bit of a chore, you have to really press down on the filler end and keep up the pressure whilst filling, I count to 20, release lever listen until the gurgling (filling, quick 10 count) stops, then pull down the lever, 20 again, until you big O2 cylinder puffs out a load of vapour, dial should idicate full. Some of these machines use a sort of weight system to see when full, not easy to judge how long you have left, try and avoid these. The only care I do is when back pack has been used and is empty, doesn’t hold its charge and slowly uses up what is left, I take off the bottom and allow the felt to dry out. If you get one of the wretched ones that uses a sort of key system to hold the bottom on, don’t bother, just use tape each time as key is useless.
Good luck in getting a really good one. (Caire)
Sue
-
Marianne and Susan,
Thank you so much for your replies, its great to have this forum to turn to.
Cheers, Elizabeth
-
HI, guys iam getting more hope with your comments.
One question for you guys.
Is liquid oxigen good?? Because i would like to get it for my mom. She has the normal oxigen that Last 2 hours. Potable.
-
HI, guys iam getting more hope with your comments.
One question for you guys.
Is liquid oxigen good?? Because i would like to get it for my mom. She has the normal oxigen that Last 2 hours. Potable.
Also, my mom was at hospital Last month, one of the nurses told us to buy llanten. It is plant that is good for the lungs. My mom has been talking it. She has felt a little better. I dont know if this plant in the US. something that you can Google it might work
One huge for everyone from colombia
-
Hi, Alejandro –
It’s difficult to answer the question of whether any particular form of oxygen is “good.” They are all good depending on the circumstances, in my experience. I began using oxygen cylinders and they met my needs at first when all I needed was oxygen for going out. But eventually I was using more and more oxygen and had to have deliveries 2x a week. I was switched over to liquid oxygen with a large tank and refillable flask. Liquid oxygen in the flask lasted a lot longer than in a similarly sized cylinder, but even the slightest mistake in filling the flask meant that it froze up and I had no oxygen at all. As my need for oxygen has increased, I have now switched over to a home oxygen concentrator (not portable) and I am using the liquid for going out. It gives me about 2.5 hours of oxygen at 4 litres per minute. That doesn’t allow me to go very far, but to be honest, I struggle to walk for more than 15 minutes or so at the moment, even with oxygen supplementation. I absolutely love the home oxygen concentrator – I turn it on in the morning and turn it off at night when I go to bed. I keep a full flask of liquid oxygen next to the bed in case I need to get up and go to the toilet or have a coughing fit, as using oxygen is the only thing that calms my coughing enough to sleep. I hope this helps!
Best wishes,
Wendy-
Hey Alejandro, Does she drink Lianten tea or how is she using it.
Thanks and Blessings
Richard
-
-
-
Sue and Wendy, thanks so much for taking the time to reply! I appreciate your time and information. I’ll look into the Caire Hi flow and see if it’ll meet my husband’s needs.
-
Many thanks for your comments. It helps a lot.
Richard. This Plant is Hard to find and especially in this time of covid 19. But i finally found it. I
I smash the plant to get the juice and give it to my mom. But the juice I got was little, so i went to the supermarket but it is Impossible to get it. So I went to a health food store and found it concentrated. My mom has Been feeling a little better. I think the best thing to do is to do tea, but you have to get the Plant. This is a little difficult to get. Try it is best advice.You can find more information in the Internet. I Just started Last week with my mom. My mom takes the llanten 3 times during Day. After breakfast, lunch, dinner
I hope you get better and God can give us health to the people we love
?I used the Google translate. My english is not that good.
-
This is not really on the topic, but somewhat related so I hope someone might have the answer. For those of us who use tanks and carry them in our vehicles, should there be some sort of warning posted on our car in case of an accident? Since a spark mixed with the oxygen could result in a fire, that should be something police, firefighters or other rescue personnel would need to know, isn’t it?
-
Hi
I have only had to inform my insurance company, house & car, that I have large O2 tanks in the house+ 2 smaller ones and one small one permanently in the car. I do have a sign on the front door that Ii have O2 inside
Take care one and all
Sue
-
The biggest danger in a car is if you have gaseous oxygen in metal cylinders and have an accident. If the cylinder is not secured it could be thrown about the car as a projectile (like any steel cylinder). Even if it didn’t hit anybody, the closure valve could be knocked off it and the escaping gas could throw it all over the car. Think about a balloon when you release the nozzle and flies around the room.
If there is a fire in the car the gas cylinder could be heated until the increase in pressure ruptures the cylinder – probably at the valve. It would be like having a bomb in the car. I suppose this is true for LOX also but LOX cylinders have escape valves.
Be clear, oxygen itself is NOT inflammable – a spark cannot set it on fire. However other flammable items will burn much more readily in oxygen but they must be burning already or set on fire by something else. Oxygen will revive the dying embers of a fire, indeed that is the lab test for oxygen.
If you are carrying O cylinders, make sure they are secured in the trunk.
Bill
-
-
Karen and Sue, thanks so much for posting on this subject… it never occurred to us that there might be an insurance liability issue! Sue, did your rates go up with either insurance company when you told the you have oxygen in the house and car? And did they require the sign on the door?
Thanks!
-
Hi Jill
No insurance increase on either my car or house (same insurance company) BUT I live in France and way out in the sticks so things might be a little more relaxed here The sign on the door is NOT a requirement, just a polite warning in case of fire.
Hope you can get things sorted without insurance hikes. I just had the feeling that I ought to inform insurance in case the O2 negatted my insurance, cos as you know any insurance company will try and wriggle out of a big claim.
-
-
Sue and Jill, I never even thought about notifying my insurance company about the oxygen. I was thinking more about informing rescue workers about my vehicle having oxygen aboard so if there was fire involved they would be aware of the potential for an explosion. Guess I need to notify some other folks about this. I also think I will call my local police and fire departments about a warning of some sort on my vehicle. I certainly don’t recall the oxygen provider saying anything about this other than providing the warning signs to post on the doors of my house.
-
I have never thought of contacting my insurance agent regarding using oxygen. I only use oxygen (a POC) when I am out and about. At the present time I do not use oxygen at home during day or night. I have a question about using oxygen when I am out and about. My doctor prescribed 2 liters on exertion. Recently when walking with 2 liters I have been dropping my oxygen to 88-89. I sent an email to my doctor. I am assuming that I need to up the amount of oxygen. I am wondering if the high temperatures we are currently having in Ohio are affecting my oxygen levels. Temperatures here are high 80’s and low 90’s. I don’t do well when temperature is too hot or too cold. Since I have only been using oxygen a short time I thought I would check to see if anyone else has experienced this problem. Thanks much.
Marianne
-
I was told to contact my electric company to inform then that I am using oxygen in case there is a power outage. I know some people have generators in their homes. My oxygen supply company gave me portable tanks of oxygen as a back up in case the power goes out.
Marianne
-
When I called my electric company to tell them about my oxygen, they told me they base their jobs on priority and that isn’t necessarily one of them! Nice, right?
Bill, I know oxygen isn’t flammable, but I was thinking about some of the other things you mentioned. I secure my tank by tying it to the shaft of the headrest in my car, but still have thought about sparks creating a problem. You know, things like having to be cut out of a smashed vehicle. Not a peasant thought. Hence, my question about posting that info somewhere on the vehicle.
Marianne, high and low temps do cause us to need more oxygen and it is always a good idea to slow down when your sats start to fall. I think you should contact your doctor and see what advice you get about what lpm you should be using in this situation, too.
-
@casey Karen, I can’t believe they said that! Don’t they realize people depend on oxygen to like, I don’t know, breathe!? Unacceptable. I would definitely call back and ask for a supervisor. And while you’re at it you can share with them an exercise that @charlene-marshall taught to a bunch of researchers to see what it feels like to have IPF. Correct me if I get this wrong, Char, but you have them plug their nose, put a straw in their mouth, and try to walk 100 meters breathing through the straw…? Then they can tell you how much of a priority their oxygen using clients are. Harumph!
-
I am also truly sorry to hear of your experience @casey! The assumptions people make about 02 can be truly astounding. And yes, a really powerful exercise to help others realize how difficult it is to breathe with fibrotic lungs is called the “Straw Challenge”. Participants put a nose clip on and walk 100 meters as briskly as they can with a coffee straw/stir stick to breathe out of and see if they can manage it. I did this with a drug development company in California to raise awareness and all of them found it difficult to do. Their views on the use of 02 for PF patients and what we deal with really changed that day!
-
-
Yes, I hadn’t thought of that. Cutting torches can cause fires even without oxygen so an O rich atmosphere would do the trick.
-
-
Oh Karen
I cannot believe you got that sort of answer, hope you said something along the lines of, put a pillow tightly over your face and see how long you consider lack of O2 not a priority !!!! grrrrrrr
-
Susan, believe it or not, your reply made me laugh! That would have been the perfect response. I will admit that I was so stunned that all I could do was hang up. What I really need to do is call back and, if I get the same answer, ask to speak to the supervisor. I think that with your comment in mind I could do that without too much difficulty. Thanks for chiming in. As my brother would say, you made my day! 🙂
-
Happy to have made you smile, please do phone back now that you are not in such shock at their original answer.
-
-
Thank you Christie, Susan and Bill. It is wonderful to have so many people respond so fast to a question like this. I will definitely be calling both the electric company and the local police/fire/emergency departments about this. I feel that I am properly “armed” now to present my/our case.
Log in to reply.