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I was diagnosed with IPF in July of 2021. I left the hospital on 2LPM resting and 4 active. It took a month before someone came out with a portable concentrator for me and then I was told it would not work because I needed constant flow. Since then I have been dragging around size D and E tanks when I go out. In November it was increased to 4 and 8LPM and in April I went to 8 and 15LPM. After several falls from low oxygen I got a wheelchair and use it when leaving the house. This keeps me at 8LPM most of the time. Usually when I leave we take 2 E size tanks to have enough. It’s a pain in the butt, but I do what I need to do.
Dave
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Natalie,
Your problem is one that most of us have that have this thing called IPF. After diagnoised and then getting out of the hospital after 4 months in 2020, I used oxygen cylinders that put out 4 at that time. It was very oxward trying to get around with them and only having an 1 or so. I bought an Inogen 5 that is suppose to go to 6. It works fine if you not doing to much. I have now used it for 2 years. My breathing is getting worse and my doc told me the Inogen doesn’t put out what it says. At 6 it really only puts out about 4 which isn’t working for me anymore. So, it looks like I will be back on the oxygen bottles again soon. My home compactor I have on 7.5 to just get me around in the house. There are other companies out there with machines, but don’t do any better then Inogen. The are pules, not flow which doesn’t help much. What we need is a company that puts out a machine that actually does flow and put out an honest 6.
Sorry to not be of much help, but this is what I have found over the past 2 years. Good luck.
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Randy,
Thanks. I completely agree. I spoke with a someone at the oxygen concentrator store in Colorado and he said that the POC numbers aren’t the same as the LPM numbers. The Inogen and others deliver the equivalent of 1-2 lpm continuous and those other numbers are to accommodate different breathers on the POC. But still no higher than 2 LPM. Too few people need the higher oxygen levels it would seem.
Take careNatalie
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Hi again….. I’m on 4lpm myself & when my stats crash I have to sometime bump up to as high as 7lpm, 6 at the least. Doesn’t give any of the tanks much life. There is something called an oxymizer that can be used to conserve oxygen. I believe you need to be tested for it to make sure you’re a candidate for using it. Your RT will test you.
***If anyone reading this understands more anouth them, pls shoust out 🙂 Karen
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Hi Karen
I have tried an oxymizer three times (Several weeks at a time) and never found them useful. Maybe it is just me but I monitored my oxygen level with my pulse-ox and it appeared my level dropped just as fast using the oxymizer. I was told I could drop my oxygen amount by more than 50% using one but I guess I am the exception to the rule.
Dave
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https://www.oxygentimes.com/oxygen-concentrator/portable
Please Check this link if it helps you to find Oxygen-Ooncentrator
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If your state and oxygen supplier has liquid oxygen, those portable units go up to 15L. That’s what my husband uses both around the house and when he leaves. He wears it in a backpack or the shoulder strap it came with. I know not all states have liquid, but it sure is wonderful compared to a d or e tank. By the time he was diagnosed he needed more oxygen than a POC could deliver.
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I use a portable concentrator when I leave the car and I ride my scooter. I am fine with a low number of O2 when I sit. In order to get into the car, I use a 50 foot or 75 foot tube (depending whether I am driving or riding) from my 10 unit in the house plug into the wall concentrator all the way to the car. I leave the tube in the garage to use when I get home.
If you use a scooter or electric wheelchair, which I use both, then you wont need as much O2. Your scooter can carry your O2 tanks on the back of it.
Anne
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Natalie, there is a company called “SupercareHealth”. 1 800 206 4880. They have a 5 hour portable but only lasts for a couple of hours while on five, they also have a portable that goes to four and can last for six to eight hours. Give them a call. I think that they are all over the USA. Chuck Gerson
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My own solution doesn’t seem to have been mentioned. I do have an Inogen 5, and like others, I quickly learned that it was not enough for active outings such as walking the dogs. I’m generally at 4 LPM at home when active, and settings of 4, or even 5 or 6, on the Inogen are not the same. The numeric settings on the portable concentrators are NOT liters per minute!
However, my supplier set me up with a refillable system that sits on my big O2 concentrator at home. One small tank and one medium. The small tank has its own regulator, which can do pulsed breath from 1-5, or 2L continuous. It turns out that the pulsed breath at 5 actually seems equivalent to 4LPM at home, or maybe a little better. That’s based on how well it seems to keep my O2 up when I’m out walking the dogs. Way better than the Inogen at setting 5. On the little tank, with a breathing rate of about 40-45 BPM when I’m walking, I can take a 35-40 minute walk and still have maybe 10 minutes of reserve left.
For longer outings, I use the larger tank or the Inogen. The Inogen is fine for shopping trips, etc., where I’m in the car or walking sedately through a store.
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Here’s an update to this post from last month: I got a Sequal 5 (19 pounds) from my provider. The unit is both continuous (up to 3 LPM) and POC (up to 6 whatever ml that is). At 3 LPM, it has only 75 minutes of battery. It charges in the car, but only at 2LPM. Otherwise it will charge to 3 but it takes a few hours. I keep it plugged in 24/7. It is useful IMO, but has limitations.
I got an Oxymizer from Amazon for $25, no prescription needed. It took a lot of trial and error and calls to their tech line to figure out how to breathe. You have to inhale AND exhale through your nose. No mouth at all. Breaths need to be deep but at normal speed. Too shallow and your sats will fall. It’s hard to get the hang of it. It increased the O2 by about 20%. However I am hoping more practice will increase the O2 more.
On a bit of good news: I had a HRCT in mid October and there was no progression since early June. The Dr decided no Ofev at this time. Next PFT is the end of December.
Best wishes to all, Natalie -
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My concentrator made by Inogen goes up to 6L. I’m sure the battery would run out fast but it plugs into the car to charge. It’s the G5 model
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Your Inogen goes to #6. That is not the same as 6LPM, and in fact is quite a bit less, because it is pulsed delivery. (I have the same model.) There is no direct correlation between LPM and the numbers you see on pulsed devices. They are different scales.
My own experience suggests that 5 on my Inogen does not give me as much boost as 4LPM on my continuous flow machine. But 5 on my small tank with pulsed delivery seems about the same as 4 in the home.
6 on the Inogen does indeed run down the battery pretty quickly. I’ve only used it a few times, mostly when I was plugged in.
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Hello again everyone. Just thought I would put another 2 cents worth back in. The Inogen and I have split company. Yes, the pulse system is pretty worthless when you are on high output. I found this really the hard way last week. I was shopping at Walmart, with the Inogen, and suddenly got spots in front of my eyes. I didn’t have my sunglasses on so figured that was the problem since I’m light sensitive. I left and it got worse by the time I got home, I just about couldn’t see. Got in the house and put the finger oxygen/heart rate on my finger. My oxygen was at 66 and my heart rate was 140. As you know. 66 is way below the 88 minimum. My home machine is at 88. So, back to the cylinders and learning how to deal with them. Should be interesting trying to push it and carry stuff. Anyone with good ideas, let me know. Have a great day everyone.
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Wow, that’s really scary Randy. I am glad you got home safely and got your home oxygen on to recover. I had heat stroke while I was at a grocery store once and it was just like what you described. I could hardly see. I sat in the car with the a/c on and drank a huge cold water before I could drive but I was still having problems 30 minutes later when I got home.
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I have an Inogen one that delivers up to 6 liters intermittent which works for me to get to a from the car. Once seated, I can get by on 2-4 Liters which gives me 3-4 hours of battery. I also portable oxygen tanks that refill from my concentrator when at home. I take a tank with when leaving the house in case the battery runs out.
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Had to take my mom to Dr and she is on 4.5 liters. Took an e tank and a smaller one. It’s super stressful trying not to run out. Ask your Dr. Office if they have oxygen sometimes they have put her on their oxygen. But the day we went to the doctor’s office the small tank ran out so I had to go to the car get the E tank and drag around both of them. It really is stressful and annoying to try to figure out how to manage these tanks. I am really surprised that there isn’t a better solution for these poor folks who can’t get out because of the restrictions of oxygen.
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Hello PF caregiver
Yes, very frustrating. Here’s what I do to save some tank time. I’m also on 4LPM. In the car, I can be on 2LPM so I use the Eclipse I have and try not to move. Then I switch to the tank before getting out of the car.
Natalie
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Natalie, Google Helios Marathon, this will lead you to portable LOX containers. You get a reservoir in your house – you must refill it (exchange it for a full one) say once a month. You then fill the portable from this. Another portable is called “stroller”. I think the maker is Caire
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Natalie. Read your posting about using a machine will driving and then the cylinder when getting out of the car. I am working on that now. I went to the bank today and used the Inogen till I got there. Then switched to a cylinder. The Inogen just doesn’t work anymore, even just setting or driving. I only had to drive a bout 5 miles but I was feeling vry heavy in the chest by the time I got there. Put on the cylinder, sat there with it on 5 and got to feeling better. So, thing the Inogen is done for.
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Randy, I wonder if your Inogen is malfunctioning. Have you seen any alerts on the screen? I recently had to replace the sieve columns in mine. (Very easy to do. I bought mine directly from Inogen.) There’s a very distinctive icon that appears on the screen when the columns are spent.
Do you see the little green light flash every time you take a breath?
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I have an Inogen One G5 portable concentrator that goes to 5 liters on demand, not continuous flow. The double battery gives you at least 8 hours on 3 liters, but it is HEAVY and kind of defeats the purpose. Single battery is lighter, but on 3 liters it gives you maybe 4 hours. I have my Inogen One G4 for work since I only have to do short walks and can sit a lot, but it only goes to setting 3. This setting in not the same as liters, FYI.
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>> Inogen One G5 portable concentrator that goes to 5 liters on demand
Again, that’s not really 5 liters. It’s just setting 5, and the actual amount delivered is considerably less than 5 L. It’s very confusing, and I wish they had come up with a better way of measuring these things. Even my pulmonologist was confused by it.
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Hello again Jeff. The Inogen I have now is a replacement for my original. That one went nuts and quit working even after I put new columns in. The bells an whistlers work just fine. No figures and the little lights work everytime I breath. I tried the Inogen as I drive or ride and then the tank when I get out of my truck but th Inogen just didn’t work out. Got a heavy chest again. I was at the bank when it happened, so switched to the tank, waited a couple of minutes and was then able to go and do my business. So, looks like the tanks and I are back together.
People are talking about e and d tanks. Which is bigger? I was looking over mine and couldn’t find anything saying e or d. It says something about 24 cu. ft. all I know is at 5 it only last about 2 hours and you cannot plug it in.
Well, have a great week and weekend. Yak at you and everyone later. Randy
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Are any of you on a home fill system? I think that Inogen makes one but it’s not the same as what folks are mentioning here, or is it? It seems like having one of these systems would eliminate the oxygen provider. Thanks
Natalie-
Yes, I am on a home-fill system provided by the company that supplies my big concentrator. It works quite well. I have a small tank, good for about an hour at pulse-5, and a larger tank that lasts a good bit longer. Either one can go in a regular backpack, with some bubble wrap jammed around it to hold it steady. It doesn’t entirely replace the Inogen (which, for example, I needed use when I flew on a trip; and which I often take if I’m going to be out and about for a while, and able to recharge in the car). But it’s great for most of my jaunts. The system is by Invacare, and my insurance covers the rental.
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Liquid oxygen. Very simple. I’ve been using it for 7 years.
This subject has been beaten to death on these boards. Please carefully check anything you are told about POCs, the salesmen are not reliable. That is being kind to them. -
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Ihave been using the Inogen portables for several years. I started at 3. I am now using the Inogen that goes up to 6. I was unaware of the discrepa0ncies mention in these replies because the Inogens seem to work for me. I have car chargers in all of our cars and take an extra battery with me now for occasions like this afternoon when my granddaughter invited me to the movies and the movie ran a long 3 hours. The Inogen does not to the advertised 8 hours at the 5 level that I require. I switched batteries in the theatre and was able to enjoy the show. I also take the regular charger with me to gatherings and friends and family understand I need a seat near an electrical outlet.
The Inogen runs on pulse so I am fine doing quiet things, cards, coffee etc. I am much more comfortable on the continuous flow provided by my in house condenser Walking is slow on the pulse driven portable but easier when I sling the tank onto the seat and just push the walker around the museum etc.
There is no portable that goes beyond 6 so I will eventually get to the wheeled bottle tanks which are heavy and awkward. I intend to find out more about liquid oxygen mentioned by one of the respondents to your query.Go gently until you know what makes you comfortable but don’t let this IPF deter you from adapting and enjoying life.
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