This topic contains 56 replies, has 17 voices, and was last updated by  Mark Koziol 4 months, 1 week ago.

  • Author
    Posts
  • #13995
     Patti 
    Participant

    Good Morning!

    This is my first ever post, so hello to all of you! My name is Patti.

    My mother was diagnosed with IPF about a year ago. She has been on oxygen therapy for about 8 mos. She uses liquid oxygen  -a large tank I call “the mothership” sits in our home, and she has a small portable Helios unit she uses when out and about.

    The problem is, the Helios portable is a little finicky and isn’t always dependable. In fact, we are on our third Helios machine due to leaks and broken components. She and I have decided to look into portable concentrators – like Inogen…or similar. However, we know nothing and therefore have lots of questions. Like :

    will insurance cover them?

    will we need to keep the large liquid tank?

    Where do we look for them?

    What do we want to ask?

    Do we purchase or rent??

    Does anyone have brand/model recommendations?

    Or are there other options?

    Should we just stick with Helios?

    Please help guide us!

  • #14001
     Charlene Marshall 
    Keymaster

    Hi Patti,

    Thanks so much for joining us and for starting this topic thread. I know a lot of people are interested in portable oxygen concentrators (POCs) so I am sure the replies will be helpful for a number of folks!

    Sorry to hear of your Mom’s diagnosis of IPF, such an unfair disease isn’t it? Glad she has been able to use oxygen therapy though and hopefully resume as many normal aspects as possible. Your best bet re: POC information is to speak with her current oxygen provider around her 02 needs and then determine which POC is best for her. However, I’m happy to share my current experience with my POC and answer your questions for you!

    The POC I have is the Respironics SimplyGo machine and goes upto 6L continuous flow. The only “complaint”I have about it is that it is heavier than I’d like it to be. However, I have a trolley for it and I just put it on there most of the time and pull it around. It is FAA approved (for flying) and the battery really lasts a long time. Here are my answers for you:

     

    will insurance cover them? I am in Canada, and therefore I think insurance differs significantly from the US. My insurance provider did not pay for my POC, I actually purchased it out of pocket through my oxygen supplier. That way I had it and there wouldn’t be any issues with it, but they do help me maintain it.

    will we need to keep the large liquid tank? I don’t have a large liquid tank anymore, I do however have multiple cylinders around the house (E and D sized tanks). I strategically place them so they are close to all staircases in case I need them once I get to the top and in different rooms throughout my home.

    Where do we look for them?  You can purchase POCs online as long as you have a script for oxygen therapy. However, I’d go through your oxygen provider to have a professional contact, who can help you  maintain the machine if it needs repairs, etc.

    What do we want to ask? Flows! The most important thing (in my opinion) is ensuring the POC you purchase can accommodate not only your Moms current oxygen needs, but also as her needs grow and increase. Battery lifespan is also important to consider!

    Do we purchase or rent?? I considered renting, but in the long-run purchasing was a smarter option financially. I needed to do some saving, and actually did a fundraiser to help generate the $3500CAD that the whole oxygen package included (trolley, excess battery etc) so that was helpful. Not sure if this is an option? Longer term I think financially it is better to buy but not always feasible for others.

    Does anyone have brand/model recommendations? I like my Respironics SimplyGo machine. The only thing I wish, like I said above is that it was a bit lighter in weight.

    Or are there other options? I know lots of people like the Inogen machines too! I don’t have any other personal experience with other POCs to share with you unfortunately ….

    Should we just stick with Helios? Can’t provide direction on this either, sorry.

    Please help guide us!

     

    I hope this helps a bit!
    Cheers,
    Charlene.

    • This reply was modified 1 year ago by  Charlene Marshall. Reason: bolding questions for clarity
  • #14005
     Patti 
    Participant

    Thanks for all this info, Charlene! This is great. We are still new to all this, so this is very helpful.

    My mom requires 2 liters, at least I think that the right term.

    Can’t wait to hear opinions from anyone else! On brands they like, didn’t like, etc!

    • #14014
       Charlene Marshall 
      Keymaster

      No problem at all Patti, glad it was helpful for you!
      I hope others respond for you as well, as there are lots of wonderful people on our forums who are always willing to help when they can. Please feel free to reach out any time, we all truly “get it” on these forums as we’re patients or caregivers ourselves 🙂

      Just one more idea: if you go to the homepage of the forums and type in “portable oxygen concentrator” in the search bar, you might pull up some previous conversations about people discussing their POCs on the forums. This might help provide you with additional information!

      Take care and reach out any time!
      Charlene.

  • #14250
     Sandra Vanzyl 
    Participant

    Hi Ladies, I’ve been on oxygen since January 2018′,  2l at rest, 6L when I’m up and about the house such as doing things in the kitchen, tidying up etc.   8L to climb the stairs and sometimes I need it on 10 for the stairs tho’.   Sleep with it on 2.5 L ….the portable oxygen and or tanks are used when a have a coughing episode and now I crank them up to 15 because it shortens the episode of coughing !   This is so life changing ……most days I’m happy and try to get things done and others like yesterday and today where I have the energy of a knat .

  • #14265
     Charlene Marshall 
    Keymaster

    Hi Sandra,

    Thanks so much for getting in touch with us. I thought you were using supplemental oxygen, but couldn’t remember if we’d talked about that previously or not. Your requirements are very similar to mine. I usually ‘max’ myself out right now at 8L even for exertion, but I am not opposed to ‘upping’ it even temporarily if I need to. So you must have to use it now 24/7… did you start with it only at night, or were you put on it 24/7 right away. So glad you’ve figured out a way to shorten your coughing episodes and yes, I couldn’t agree with you more: this certainly is a life changing disease! Hope you just rested today, as it might have been what your body needed 🙂

    Take care,
    Charlene.

  • #14279
     Steve Dragoo 
    Participant

    Hi Charlene,

    Thank you for all the care and time you invest in this PF newsletter.  You are highly appreciated and needed.

    SteveD

    • #14286
       Charlene Marshall 
      Keymaster

      Thank you so much for kind words Steve, I really appreciate them and they brightened my day 🙂
      I am so happy to be part of these forums. I hope you have a great week!

      Cheers,
      Charlene.

  • #14299
     Nola Turner 
    Participant

    I use the SimplyGo Pro also.  Luckily I only have to use it for excercise and exertion.  I have a large machine that is also a oxygen concentrator in the house for housework etc.  I have been very lucky to have the POC as I do like to travel and I have a backpack to assist with this.  It also makes walking much easier and I am glad to see the fanny packs coming back as I do have trouble with my handbag along with the backpack.  I agree that these are quite heavy Charlene, but I would be lost without it now.  I am even used to dealing with the airlines regarding carrying the POC on flights.  Each airline seems to have their own idea of how to apply!

    I hope this is helpful for anyone considering the POC.

    Nola

     

     

     

    • #14316
       Charlene Marshall 
      Keymaster

      Hi Nola,

      Thanks so much for getting in touch with us regarding your portable oxygen concentrator (POC). I have to just say before I begin, that your name is beautiful. I’ve never “known” anyone by the name of Nola before, and I think it is such a great name 🙂

      Do you know if the SimplyGo Pro is different than the SimplyGo POC? It sounds like it might be a bit lighter than the one I have, and I’m not sure the one I have would fit into a backpack. However, I’m so curious to know if it is the same POC because I’d love to buy a backpack if it is. This is the link to the POC that I have: https://www.oxygenconcentratorstore.com/respironics-simply-go/  …. is it the same as yours? I also have a home concentrator that is quite large, and a number of different tanks as well. I also would be lost without mine, and I am so thankful to have this option as I can bring it on board a plane with me, because like you, I love to travel! Which backpack do you use, if it is the same POC Nola?

      Take care, and thanks so much for writing to us! The information was indeed very helpful.

      Kind regards,
      Charlene.

  • #14303
     Smokey 
    Participant

    I own the Inogen G3 with 3 batteries. It is a pulse operating machine. It will provide up to 5l but will not provide continuous flow.It is nearly brand new as I purchased it in March or April of this year. After several stress tests my critical care doctor changed me to continuous flow as I was not getting enough oxygen on pulse. I called Energon to see if they would buy it back but was told my 30 days was up and so there was no return. $3500.00 down the drain.

    So, whatever you purchase make sure it will meet her needs no matter what the future brings. Good luck!

    • #14317
       Charlene Marshall 
      Keymaster

      Hi Smokey,

      Oh no, I am so very sorry to hear this and especially that Inogen won’t take it back despite it being within the 30 days. Can you sell it? I do see people selling them online, or posting in various Facebook groups or forums that they have a POC for sale. This might be worth a try to see if you can recoup even some of the $3500 you spent on it. I know they can be very expensive, so I’m really sorry to hear your needs changed so soon after purchasing this machine. I can do what I can to help you sell if it you’d like? Just let me know and I can brainstorm some ideas!

      Take care,
      Charlene.

  • #14305
     Robert Morgan 
    Participant

    I need a POC for travel and it is complicated! My oxygen supplier, LinCare, says there is a backlog in getting them. We have a trip planned in mid October, and I may have to rent one for about $125 a week. There are several websites that rate the different makes and models. Inogen One G3 is highly rated in most reviews, but LinCare won’t carry it. If you can choose, check out the comparisons on line. There are a lot of differences in weight, battery life, etc. The G3 has the advantage of allowing users to replace the sieve filters  rather than having to take it or send it to a distributor to get it done. The sieves and spare batteries are expensive. For our vacation, we plan to ask the resort where we are staying to find a source for renting a continuous flow machine, which I need when I am sleeping. Medicare will cover the cost in the US for a period of years but I do not believe it will also cover tanks. Most of the POCs are approved for airline travel, but you may have to get an official document from your pulmonologist first. I am interested in what experience users of the forum have had with POCs.

    • #14318
       Charlene Marshall 
      Keymaster

      Hi Robert,

      Thanks so much for writing and sharing a bit of your experience with us. Yes, the POC are hard to come by through an oxygen supplier, or at least I’ve heard this anyways. Likely it is due to the convenience of them and thus, the high demand for people like yourself who are wanting to travel. Do you do a lot of travelling? If so, it might be worth it to invest in one if that is a possibility for you. I was gifted mine by a stranger (it is a beautiful story actually, and although I am fairly confident I know who it was, my transplant coordinator won’t reveal who it is because they wanted the gift to be anonymous). Otherwise, I wouldn’t have been able to invest in purchasing one yet either. It has made such a difference for me though, because I sure love to travel!

      I have heard a lot of great things about the Inogen 3, I agree but it is always good to compare settings, abilities, costs, flows, etc. of POCs, especially against your specific needs. It is also so important to look at the battery life because POCs can’t be plugged in on airlines due to the power sources, so they need to operate only on batteries and thus, the battery life is an important consideration if you’re wanting to travel via air plane. I love my Respironics SimplyGo machine, my only complaint is how heavy it is for me…. I usually lug it around on the trolley.

      If it would be helpful, I am happy to share my experiences of air travel with you if you’d like, while using my POC? I’ve been down to Australia, the western US coast of California, NYC, British Columbia and am just about to head out to Nova Scotia next week, all with my POC in tow. Let me know and I’ll try to write out my experiences, or I’ll message you privately with them. 🙂

      Goodluck,
      Charlene.

  • #14339
     Smokey 
    Participant

    Hello Charlene!
    Just a couple of things to correct. :>) I purchased the POC from Enron and was past the 30 day limit. But as it was so new I assumed they would possibly buy it back. Wrong! I would very much appreciate any help, suggestions, or advice that you might have for me to sell it. I would like to get 80% of what I spent out of it. I don’t think that would be out of line, but if it would please tell me.

    Thank you and may the Lord bless you.
    Smokey

  • #14341
     Charlene Marshall 
    Keymaster

    Good Morning Smokey,

    Thanks so much for your reply and clarifying the POC purchase for me. I can completely understand your frustration of Enron not giving you the money back, especially because it was so new and hardly used. Such a bummer! I don’t think requesting 80% of it back is unreasonable, especially give the price you paid for it. Let’s see what we can do! I’m going to share the details with a friend of mine who manages a few Facebook groups for PF patients and she will post the details there to see if there are any “bites”. I’ll then connect those folks to you, if that’s alright. Can you private message me (to do so, go here: https://pulmonaryfibrosisnews.com/forums/members/charlene-marshall/) your email address so I can have these folks get in touch with you? Just wanted to give you the option of sharing it privately if you’d prefer that.

    Stay tuned, I’ll see what I can do for you in terms of getting this POC sold to someone who needs it.
    Talk soon,

    Charlene.

  • #14343
     Nola Turner 
    Participant

    Hi Charlene,

    Thank you for your nice comments on my name.  My POC is the Philips Respironics Simply Go Mini which explains why it is not as heavy as yours.  The backpack came with the machine (it only carries the POC) spare batteries are carried separately – it says in the instructions that “the settings of the Philips Respironics SimplyGo Mini might not correspond with continuous flow oxygen”.  I guess this means that it is not suitable for very many people.  I am lucky that my fibrosis is in the early stages at the moment.

    My oxygen needs are supplied by Complete Health Care Solutions and are paid thru our health care system. (Most of the time) I have had to pay a rental when my oxygen levels went up but it was cancelled when they went down again.  I did try to buy one at that time, but found that it is not possible to purchase them here.  I was investigating buying one from the U.S. when my oxygen went down again so there was not need to buy.

    I think that all airlines will accept the POC’s but before buying you should check that they are on the approved FAA list.  It is a great relief to be able to travel as I have my family spread out internationally.  I normally travel Air Canada, but this year I am trying out Air New Zealand who have also been most courteous about the oxygen.

    I can enquire regarding the backpack if you wish.

    Regards,

    Nola

     

    • #14372
       Charlene Marshall 
      Keymaster

      Hi Nola,

      Thanks so much for getting back to me! I hope you’ve had a nice weekend 🙂

      Ah yes, my POC is not the mini SimplyGo machine from Respironics, it is the full-sized concentrator. You are right, this is why it would explain why my machine is so much heavier. So glad you have a POC that works for you and your oxygen needs, and hopefully allows you to remain as independent as possible. That is wonderful!

      You must be in Canada as well then, Nola? Welcome from a fellow Canadian!

      My POC is FAA approved thank goodness, because I love to travel as well and am actually boarding a flight tomorrow to the Canadian east coast. So far all the airlines I’ve been on have been very accommodating as well, especially WestJet. Air Canada has been good as well, but require a very lengthy note from my doctor explaining my oxygen needs. This isn’t a problem to get, but just takes some time that’s all. I’ve heard wonderful things about Air New Zealand as well. Best of luck with your travels, I am very jealous as I’ve never been down to NZ, just Australia.

      I’d love it if you could look into backpacks, and share anything you come across. That said, I don’t want to create extra work for you so only if you have the time 🙂

      Warm regards,
      Charlene.

  • #14344
     Chuck Harrison 
    Participant

    Because of my insurance I get to carry around the “E “tanks . I have a choice I can have one of the small concentraters but go without large one I have at home , for overnight and stuff they will not cover both . I’m at 4.5 liters so when you come down to it the ” E ” tanks  are the better choice . But they do get heavy and are cumbersome.

    • #14373
       Charlene Marshall 
      Keymaster

      Hi Chuck,

      Thanks so much for getting in touch with us regarding this topic, it is nice to hear from you! How have you been doing?

      I have one “E” tank and agree that they can be handy in terms of continuous flows that last longer than some POCs, they are also cumbersome I agree. The thing I like most about my “E” tank is the trolly it comes on and how easy it is to wheel around the house anyways, not as much around outside as I’d like. Do you use a large POC at home then, with a long cord to move about the house? This is what I do, and I leave it up by my bed.

      Hope you continue to do as well as possible and thanks for writing!

      Cheers,
      Charlene.

      • #14399
         Chuck Harrison 
        Participant

        Yes I have a pic at home I use , it has a twenty five foot leash on it and I’m able to get around pretty good . At night I transfer over to a fifty foot line up the 02 and I’m good . We work it so I get out on the porch .
        I have missed being on the forum , I’ve been struggling for a hit , but I’ll be ok .

      • #14442
         Charlene Marshall 
        Keymaster

        Hi Chuck,

        It’s nice to hear from you, I’ve been wondering how you are doing. Sorry to hear you’ve been struggling a bit, is this with health issues, or more mentality of dealing with PF/IPF? The two can both be overwhelming and go hand-in-hand. Sometimes I think the mental struggles of this disease are harder to deal with than the physical ones. Hope your struggles start to even out soon, and know that we are all here on this forum and truly understand.

        Glad you use your POC at home and that it still enables you to get outside a bit. That is important to me as well! 🙂

  • #14397
     Bill Hunt 
    Participant

    I just lost my post so will begin again.  I am replying to Patti and Nola Turner and others.  I have a SimplyGo concentrator that is simple to operate and has 5 levels.  I use it at a level 3 at the gym or anything else that is strenuous for me.  I should use it more but I am stubborn as my wife keeps telling me.  It cost me $2,295 and Medicare does not cover it.  My oxygen level at home is around 97 and I feel good.  It can be taken on a plane.  There is a longer life battery you can buy.  It also can be re-charged in the car.  I am very please with it.

     

    • #14443
       Charlene Marshall 
      Keymaster

      Hi Bill,

      Thanks for getting in touch, and sorry about the technical glitches of the forum and it losing your post. Glad you re-wrote us back though 🙂

      I like my SimplyGo machine as well, it has really provided me with the freedom to travel still which I am so grateful for. I just got home from a trip with it, and there were absolutely no issues with the airline which was nice. I wonder if yours (or mine?) is a newer version as mine doesn’t have the levels but it does have 3 modes of 02 administration: pulse, continuous flow and sleep sensitivity (and all of these can be adjusted to the LPM I need, depending on my activity level). I use my car charger for mine all the time, and am happy with being able to purchase an extra battery too as I sometimes have to change it on the plane, since no POC can be plugged into an airplane power source yet. I’m happy with my machine as well!

      Thanks for sharing your experiences with us.
      Cheers,
      Charlene.

  • #14411
     Ray Hastings 
    Participant

    I have the simply go anti works well. i bought it several years ago. it goes from 1 to 6 litters and works well 24/7. my wife and i travel a lot and the airlines allow it onboard and you can use onboard. it is best to register it with the airline before you travel.

    bought mine online but it would be better to buy local, if possible. i am  going on 3 years and no problems. there is no routine maintenance .

    none of the insurance i have covers the cost. some things to ask about

    does the seller have a loaner program in case you need to have it repaired

    my unit cost about$2500. bought 2 extra batteries and a charger as extra from Amazon

    it is a little heavy buy with the trolley that comes  with the machine it is easy to move

    if you need more than 6L this is not for you

    god luck

     

     

     

    • #14452
       Charlene Marshall 
      Keymaster

      Hi Ray,

      Thanks for getting in touch with us and sharing your experience with the SimplyGo respironics machine. I use the same portable oxygen concentrator (POC) and have very little to complain about mine as well, other than the weight which I find a bit too heavy for me. However, I just use the trolley to lug it around and it eliminates that complaint. I also travel often, and it is easy to bring onboard an aircraft. I just was on a flight with it yesterday, and there were no issues and if the flight is long, depending on the amount of oxygen that I need, I just bring an extra battery to change it as it cant be charged on the aircraft.

      Good information about buying local as well, I’d imagine most oxygen suppliers would allow you to be able to purchase through them I’d think? I haven’t needed maintenance on my machine either and it looks like the cost was relatively equivalent.

      Thanks again for sharing!
      Charlene.

  • #14419
     Laura Denne 
    Participant

    My husband just passed away this week, but we have had the Inogen G3 for sale for about a month. If you might be interested in getting a gently used, almost new, “top of the line” Inogen for about half price, please email me at [email protected] and I would be happy to give you more information. It is important to know that this machine has a maximum output of 6 liters. Many people stay at 2 or 3 liters for a long time and can use the machine for travel or just convenience (it’s approved for air travel and is small, lightweight, and somewhat discreet…unlike oxygen bottles) My husband’s disease was progressive (IPF) and we knew that eventually he would ‘outgrow’ the machine, which he did about 6 months ago. It was SO wonderful to have for the years he used it. It allowed us to travel extensively all over the world!

    • #14488
       Charlene Marshall 
      Keymaster

      Hi Laura,

      Thank you so much for getting in touch with us, and my deepest sympathies on your husband’s passing. This must be such a tough time for you, and then to reach out and offer members of this forum his Inogen G3; that is so very kind and brave of you. Hopefully someone who is looking for a POC reaches out to you with interest in purchasing it, I know it would be helpful for those wanting to travel especially. Actually, I think I’ll send you a message about this as I know a friend who might be interested in it who isn’t on the forums (yet) and she might want more information. Stay tuned for a private messaged 🙂

      Charlene.

  • #14420
     David Naumann 
    Participant

    There is a big mistake going on in this discussion.  It is very common because the Portable Oxygen Concentrator manufacturers and sales have confused the issue.  Almost none of the POC’s mentioned in the discussion deliver in “Liters Per Minute,” lpm.  That can only be applied to continuous flow.  Even the very best (in most informed opinions) POC, the Philips Respironics SimplyGo Pro delivers a maximum of 2 (yes, that is two) LPM continuous.  It also has numbered settings from 1-6, but they are pulsed.

    There is nothing wrong with pulsed, it is effective for a majority of users with relatively low demands.  But it does not compare well with continuous flow.  Most well-informed oxygen people I know or whose writings I have read, have suggested that while the numbers on pulsed settings do not match LPM delivery, they work for many people.  The best estimates recognize there are great differences between persons using Oxygen therapy, the equivalence is about 1/2 the LPM rate.  That is, if you need 2 LPM continuous, you will get about the same oxygen at the pulsed setting of 4.

    What this means is that when someone says they are getting 6 LPM from the SimplyGo Pro, they are actually getting 6 pulsed — which corresponds approximately with 3 LPM continuous.  The immensely popular Inogen One G3 and G4 are strictly pulsed.  Users really need to know that if they need more than 3 LPM these light POC’s will not deliver or will be just at the margin.

     

    • #14489
       Charlene Marshall 
      Keymaster

      Great reply David, and thanks for clarifying!

      Yes, this LPM issue is not uncommon for manufacturers of oxygen concentrators to confuse (intentionally or unintentionally) patients who are looking to purchase a machine. Most people, as you say, do well on pulse flows which have a higher oxygen administration than continuous flow options on any POC. Good to know about the 1/2 LPM rate between continuous vs. pulse flow options! I’ve never heard that before and am curious to ask my medical team about it, but it does make sense to me.

      I am glad I have the SimplyGo Respironics machine for a continuous flow option, as I do find it effective for me during times of increased SOB but usually use a pulse setting, which is what the Inogen G3/4 administers as you say. Thanks again for clarifying this – I am sure many others will find this information really helpful as well 🙂

      Cheers,
      Charlene.

      • #14512
         David Naumann 
        Participant

        Charlene, I hope I didn’t make a bigger deal out of that 1/2 ratio between continuous and pulsed flow!  That number is more of the “if I didn’t have any individual’s measurement, it would be my best guess of the effect.”  The effect of pulsed oxygen delivery varies greatly from person to person, AND from time-to-time.  As you know, some of us breathe so softly when resting or sleeping that the pulsed device does not sense an inhale and therefore does not deliver any oxygen at all.  (Your SimplyGo is one POC that can sense the missed breath and switch you to continuous immediately, also waking you to take action.)

        Many interpersonal differences influence how much and how well a small, short pulse of oxygen actually gets to the right parts of the lungs at the right time.  Similarly, many interpersonal differences affect how much or what proportion of continuous oxygen are actually used in this or the next breath.  The short answer is nobody knows, but the device makers try to cover the majority.

      • #14531
         Charlene Marshall 
        Keymaster

        Hi David,

        No problem at all – I completely understood the 1/2 ratio between continuous and pulse flow to be a best guess with no other measurement option/tool. I still think it is an easy ratio to remember if ever in that situation, so I appreciate your sharing it 🙂

        Yes my POC often alarms in the night as I take very short/shallow/soft breaths and it switches to continuos flow, also alarming “no breath sounds” on the screen. Sometimes if I am tired enough, the alarm sound doesn’t wake me up it is the shortness of breath that does, but it sure makes people around me jump if my POC goes off in the night. I like this feature of my POC, it is an added layer of safety and comfort for me in the night especially.

        Thanks again for sharing!
        Charlene.

  • #14421
     Steve Dragoo 
    Participant

    Good to know. Thanks David.

  • #14423
     David Collard 
    Participant

    Thank you David Naumann as I too thought that there was confusion on this post, or is it me that is confused as to POC versus the oxygen concentrator/transfill system which I use either directly with a 50 ft hose or with the tanks that it refills. I gather that a POC unit does not deliver a continuous flow of oxygen, or is there such a unit? The concentrator system works well for me as I require continuous flow at the 2.5 level now when I am active; and I anticipate that the rate will increase over time. The concentrator also has the capability of filling tanks which take about 2 1/2 hours to fill and can be used at the 2.5 level for about 2 1/2 hours. The tanks allow me to take road trips and outings that are within the 2 1/2 hour time frame. I only need the 2.5 if I am active, so I can turn the dial down when I am sitting. This extends the length of time that I can be on the tank.
    Great service from Medigas which is fully funded by the Provence of Ontario health plan. I also gather that I can get Medigas to install a temporary unit in a hotel room or home that I would visit at a location within Ontario which is remote from my home.
    What I am seeking is information on a Portable Oxygen Concentrator which is continuous flow so that I can get to an airport and then participate in a flight that delivers oxygen and use the POC during the stay and to get to and from the airport.
    Any suggestions on how best to travel with oxygen ?
    thanks
    David Collard at [email protected]

    • #14424
       David Naumann 
      Participant

      There is at least 1, the Respironics SimplyGo Pro.  I am not aware of anything that is less than 18 Lbs (and needs spare batteries etc that push the weight up to about 25 Lbs.  I quit flying when my SimplyGo was no longer enough for me, with its 2 LPM.  (If I absolutely have to fly I’ll rent one of the big ones.)  I think there is an Equinox  portable that goes up to 3 Lpm continuous.

      My US supplier, Lincare, delivers whatever I need to hotels and motels as long as I give enough time.  So except for the flight I can continue to travel anywhere in the US, because Lincare seems to cover all states.

       

      • #14492
         Charlene Marshall 
        Keymaster

        Hi David,

        Yes, you’re right – the SimplyGo Respironics (I don’t think mine is the Pro version, maybe it is but pretty sure it’s just the SimplyGo machine) is quite heavy! That is my only complaint about it, and then on continuous flow it does use up quite a bit of battery so I either always have a second battery, or am hooked up to my car/wall charger if I am feeling the need for continuous. I was on continuous flow almost my entire trip to the east coast last week and the power ran out one night, which is how I noticed how quickly the battery drained. We had to move to the car charger, it was scary but sure taught me a lesson!

        Glad you’re still able to travel within the US though David 🙂
        Charlene.

    • #14490
       Charlene Marshall 
      Keymaster

      Hi David,

      Thanks for your reply, and I hope our conversation is clarified a bit for you regarding POCs and continuous vs. pulse flow options. For your needs specifically, if you have questions, I’d definitely encourage you to consult with your oxygen provider, just to ensure you’re using the right machine and settings that optimize your 02 requirements. However, to answer your question, yes my SimplyGo Respironics POC does deliver continuous oxygen flows! I’m not sure which other POCs do, but during specific exercises I rely on the continuous flow of my POC so I can confirm there are machines out there that administer this flow regularly. The battery doesn’t last long on this setting, but between a wall charger and my car charger, I never really have a hard time keeping the battery “alive”.

      Medigas isn’t my oxygen provider for Ontario, but I have heard that they will provide a temporary concentrator for travel desires yes; they just require a bit of prep time/notice in advance. My friend in Ontario has done this before! I’ve travelled all over Canada (Nova Scotia, Vancouver, Calgary, etc) with my POC and not had any issues getting to/from the airport, or using the machine on the flight. To use inflight oxygen, you just need your doctor to fill out the paperwork required by the airline, which can usually be found online. 🙂

      Hope this helps!
      Charlene.

      • #14514
         David Naumann 
        Participant

        Charlene — and others who may need oxygen during car travel.

        I discovered that it is fairly easy and cheap to be able to plug your regular home concentrator into your car.  For less than $100, an auto-parts store will sell you an “Inverter”, a book-sized gadget with connectors to the car battery, and wires to the device back inside the car.  You can have it wired permanently for more money.  Check the fine print on the tag of your concentrator, it will likely say less than 500 or 600 Watts.  While that is way too much for the cigar lighter socket, it is fine for your car as long at you keep it mostly running.

        Wire it up, plug in the concentrator, start the car, turn on inverter and concentrator, and be on your way.

      • #14532
         Charlene Marshall 
        Keymaster

        Good morning David,

        This is an interesting discovery, and definitely one that others would find helpful for sure! How did you find this inverter part, and that it would work for a car oxygen port? I have a charger for my POC that works in the car, plugs into the cigarette lighter spot (a bit ironic if you ask me, Lol!) and seems to charge it without any issue. I couldn’t imagine lugging my main concentrator into the car, but I guess for long drives or road trips this would be helpful for some people! Thanks again for sharing this helpful discovery 🙂

        Cheers,
        Charlene.

  • #14483
     Robert Morgan 
    Participant

    I discovered a website that provides a comparison among the most popular models of Portable Oxygen Concentrators. https://www.portableoxygensolutions.com/portable-oxygen-concentrator-comparison-guide/  There are many tradeoffs of weight, cost and battery life. Your oxygen supplier will likely offer only some of them. Although most come with a carry case, I ordered a backpack from Amazon for my Inogen One G3 to keep my arms free. It was cheaper and better than the one offered by Inogen.

    • #14491
       Charlene Marshall 
      Keymaster

      Hi Robert,

      This is a great resource for folks, thanks! I may try to publish it as a separate topic on the forums (giving you credit for finding it of course) so that anyone interested can compare the POC models at quick glance. I also need a machine with a backpack, as my biggest complaint for my POC is the weight of it, so it would be easier to maneuver on my back. Looking for this on Amazon is a great idea!

      Thanks again Robert.
      Cheers,
      Charlene.

  • #14484
     David Collard 
    Participant

    great web site Robert — BUT it is all for pulse POC….  unfortunately  I require continuous pulse, and can not use or manage Pulse devices.   so does any one know about continuous feed devices other than canisters?

  • #14493
     Charlene Marshall 
    Keymaster

    Hi David,

    As I mentioned a bit above, my POC (Respironics SimplyGo) offers continuous flows and the only complaint I have with it is how heavy the machine is. I have extra batteries for it (continuous flow drains the battery much faster than pulse settings) but also use a wall and car charger, depending on where I am so I manage. It’s just taken some getting used to is all. Worth looking into for your needs maybe!

    Take care,
    Charlene.

  • #14710
     Patti 
    Participant

    I wanted to thank everyone for your generous responses. Especially you, Charlene! You responses are always so thoughtful. This forum is such a wonderful resource!

    We are going this week, as suggested by someone, to a local supplier. She is currently using 2l while sleeping and while active. She currently doesn’t need it when she’s at rest. She is not as strong as she once was, physically, I mean – she’s pretty dang strong otherwise:) However, I want to find a lightweight machine, so she can be as mobile as possible.

    Thanks again to everyone. I’m sure this will not be the last you hear from me. This is all so new…

     

     

    • #14748
       Charlene Marshall 
      Keymaster

      Hi Patti,

      My deepest apologies for the delay in getting back to you, somehow this week is just getting away from me! I am so happy you found many of the responses to your supplemental oxygen inquiry helpful. This site sure is filled with amazing people who will help you whenever possible, and I’m glad sharing a bit of my experience with using oxygen was helpful too.

      How did it go with the local oxygen supplier? Were they able to recommend something both you and your Mom were comfortable with? She sounds so lucky to have you by her side throughout this journey 🙂

      Feel free to write anytime, I know it can be overwhelming!

      Take care,
      Charlene.

  • #14727
     Robert Morgan 
    Participant

    This web site provides specs for Portable Oxygen Concentrators including both pulsed and continuous flow models. The continuous models have a limited range of flow, up to a maximum of 3 liters per minute.  https://www.portableoxygensolutions.com/portable-oxygen-concentrator-comparison-guide/ When I travel within the US, I make arrangements through my local oxygen supplier, LinCare, to have a full-sized, non-portable,  concentrator delivered to my hotel. The cost is covered by my Medicare Advantage plan. If your regular supplier will not do this, I recommend doing a web search for oxygen concentrator rental [City]. I was even able to find a supplier in Cancun Mexico where we are going in October. The cost for two weeks was $270 including delivery and pickup. I made all arrangements by internet, including making a deposit through PayPal. If you are traveling by air, you must check your airline on its requirements for bringing a POC on board. You can usually find the information by searching the airline website for “oxygen.”

    • This reply was modified 11 months, 2 weeks ago by  Charlene Marshall. Reason: formatting
    • #14749
       Charlene Marshall 
      Keymaster

      Hi Robert,

      Thanks so much for sharing this valuable information with us! I’ve seen this website before as a resource, but it must have slipped my mind to post it here, so I certainly appreciate the time you’ve taken to do so. Thanks again 🙂

      Its also interesting to hear of your experience with getting oxygen concentrators rented through your insurance provider. This sounds like a good option for those who have the Medicare Advantage plan. I used one while travelling internationally too (from Canada to the US) and didn’t have troubles with arranging anything, just had a small out-of-pocket fee. However, it was nothing compared to what it would have been if I didn’t have insurance. For the two full weeks in Cancun, $270 is totally worth it I’d say. Yes, you’re right about checking with the airline in advance of flying. I’ve not had any troubles with my POC, because it is FAA approved.

      Thanks again for the information, I am sure others will find it very helpful!

      Regards,
      Charlene.

  • #18962
     Falguni Patel 
    Participant

    Hi Charlene,

    I am also looking for a continuous o2 which supports 6l is this available on a portable machine or is 6l only works for pulsating. I am diagnosed with a numerous of lung conditions which I am on o2 24/7 on 5.5l straight. I am from the UK and I am looking for a lung transplant as my condition can only be treated by one unfornately the UK is forbidden and rejected in doing this operation on the points of my lungs are small. This then made me turn my attentions to the USA but the only thing is I require to be in the USA for an evaluation which means travelling on a flight coming to my next question is which airline are helpful with this service? I’ve been unlucky with these condition as a young age. Please if you can help me or point me in the right direction.

     

    Many thanks,

    Falguni

    • #18963
       Mark Koziol 
      Keymaster

      Hello Falguni, I’m sorry to hear about your condition. Another forum member posted a topic. Please read his comments regarding poc’s. His name is Robert Morgan and he  posted on October 2. He also provided this link.

      https://www.portableoxygensolutions.com/portable-oxygen-concentrator-comparison-guide/

      As far as the airlines go, you will have to contact them directly. Best wishes. Mark

       

    • #19012
       Falguni Patel 
      Participant

      Hi Guys,

      Thanks for the posts,

      My question would be in the current market there isn’t a portable device which supports o2 for 5L? I am only saying this as I’ve been looking through the internet this whole week and the highest i get in continuous is 3l.

      The Inogen GS-100 is this machine airline supported? Or is this pretty a home device? As 5l for a flight is quite for some airline I am finding it difficult to get a flight out to the LA. Any guidance will be much appreciated.

       

      Kind Regards,

      Falguni Patel

      • #19013
         Daryl Long 
        Participant

        Greetings @falguni9003,

        The Inogen One G3 and an identical OxyGo G3 support 5L pulsed.  These are portables, suitable for airline use.  I would note that at the 5L setting, the device consumes substantially more power.  I think I get an hour off the single battery at the 5L setting.   There are numerous others, some with up to 6L, and some with a continuous flow (lower LPM) option.  The ads aren’t very helpful, but I have seen a comparison chart.

        https://www.portableoxygensolutions.com/portable-oxygen-concentrator-comparison-guide/

        The GS-100 runs on AC and is strictly a stationary device.

        Does this answer?

        Regards, daryl

        • This reply was modified 4 months, 1 week ago by  Mark Koziol.
        • This reply was modified 4 months, 1 week ago by  Charlene Marshall. Reason: tagging
  • #18981
     Daryl Long 
    Participant

    Greetings all,

    I’ve recently grown from being in denial of my condition to embracing how oxygen can improve my life.  A trip to the hospital for pneumonia served as an additional incentive.  My doctors gave me a prescription for 2L/4L (rest/exertion).  The oxygen company supplied a 50 pound soviet-styled 5Lpm stationary concentrator which covered my needs while at home, and a farm of D and E tanks for mobile use.  However, the company does not supply PoCs.

    My wife and I wanted to resume travelling, hiking, and camping, so I sought a better mobile solution.  I purchased, new, an Inogen One G3, which supports ~5Lpm and is easy to carry.  I opted for the larger back pack for hiking.  My experience has been good, although there was one failure.  The supplier fixed it, but I was stranded for about 4 weeks.  I decided to buy a back-up unit.  Inogen sells back-up unit packages, but they were expensive.  I found numerous units locally on CraigsList for $1,000 to $1,200 and bought one with low hours.   I recommend testing any unit before you buy it, and you can read the hours by holding the “Bell” button while it powers-up.  The nature of these devices means that the seller has had a similar experience to yours or have expperienced a loss, and we shared stories and support.

    The pulsed output and motors of the G3 are a bit noisy.  When I don’t want to sound like Darth Vadar, I carry a D tank in a back pack.

    Aircraft are pressurized, but not to sea level.  If you want to fly with a PoC, you will need to get tested by your doctor to guide you on  your stationary requirements, so that you can know the right flow rate and how many batteries to purchase and carry in the cabin.  I also used this info when driving through the Rockies.

    Regarding the need for a prescription:  While this is often ignored, a proper seller will ask to see yours; so bring it  with you.  I copied mine from the hospital’s portal.

    At this point, you might want to consider future oxygen needs.  Inogen recently introduced a 6Lpm (pulsed) machine, which I’ve seen priced at ~$2,800.   It is also purported to be smaller, lighter, and consume less power than the G3.  You may consider starting with this, so that your investment is protected over a longer period of time.  I think that there are other brands that support 6Lpm.

    We then went after a more convenient stationary solution for overnights and camping in our trailer, since I can no longer lift 50 pounds.  Inogen makes a GS-100 5Lpm continuous unit, which is smaller, lighter, and quieter than my large unit.   It also is more convenient to lower the flow for sleeping.  You can find these on CraigsList for ~$750-$1000.  The hour meter is in a small recess on the back.  You might want to download the manuals before you buy, so that you can become more familiar.   I use the GS-100 upstairs for sleeping, to avoid long tangled tubes.

    I’m offering my experience to help you get started.  Please don’t consider it to be a recommendation, since my experience is relativly limited and I have, admittedly, taken short-cuts that you might want to avoid.

    Wishing you good luck and good health on your journey,

    daryl long

     

     

     

    • #19006
       Charlene Marshall 
      Keymaster

      Hi Daryl,

      Great post, thank you so much for sharing some of the struggles but more so, the successes you’ve had with navigating portable oxygen. I too had to come to a place where embracing supplemental oxygen meant my quality of life would improve, as opposed to resisting it. That said, it wasn’t an easy place to get to!

      Glad the Inogen has been helpful for you. I currently use the Respironics SimplyGo machine and do find it very good, the one exception is the weight. I find it quite heavy for my needs, and am thankful for the mobile wheels that come with it. It has also been easy and effective to take on/off flights and to various travel destinations. I also have a D tank and use it more than my E-sized one, just easier to lung around but of course how short it lasts can be a concern. I usually throw it in a bag, over my shoulder and a way I go! Its funny you mention the noise of the G3; sometimes when I don’t have my POC running it is too quiet for me now. LOL.

      Really appreciate your sharing this with us, no doubt it will be helpful to others on this forum Daryl. Thanks again, and wishing you the best with your continued oxygen portables!

      Charlene.

  • #18982
     Steve Dragoo 
    Participant

    @daryllong

    Hi Daryl,

    Great info and I thank you for sharing.  Since you still get out a lot, may I ask what your O2 readings generally are?  I have had IPF since October 2016, mostly stable since May 2018, and only use O2 at night.  Soon I leave for a long flight to the Philippines and am not taking any O2 with me. Hopefully, I will sleep a lot.

    Any high altitude experiences you can share?

    Thanks,

    Daryl

    • #19010
       Daryl Long 
      Participant

      Hello Steve ( @steve-dragoo )

      I tried to reply via email earlier, but it was rejected by the server.  Now I know better.
      I have hypersensitivity pneaumonitus (can’t get air in) not IPF, so the details of my experience may not apply. Also, I tend to be more “liberal” in my approach to acquiring PoCs.  I have a tech background, and my understanding of these appliances gives me confidence in making purchases on my own.  However, each person should follow their own instincts, and some may think me to be a bit reckless.  Clearly, the most conservative and prudent approach is to leave the choice and acquisition of these devices to the professionals.

      I was tested a year ago, when I was using 2L/3L (rest/exertion) and my doc approved me for no additional oxygen in flight.  I haven’t flown yet, but when I do, I will get the airline form and have my doctor certify my status.  That said, although I’m “liberal” on acquisition, I’m very conservative in planning and execution.  While I might not need oxygen on the plane, I envision situations where I must rush through the airport, carry bags, stand in long lines in hot rooms, etc.  For this reason, I plan to carry a PoC with the required batteries for the flight, as well as AC and 12VDC chargers for airport layovers.

      I did do a considerable amount of high plateau (5,000′) and mountain (12,000′) driving.  I had no problem driving, but my wife made me stay on 2L, just in case.  I think that airline cabins are pressurized to 8,000′.   I’d recommend getting tested, since, once you’re up there, the airline might not be able to help.  They put me in a chamber in the hospital and took some measurements.  It took 15 minutes.: I’ve since “graduated” to 6L, with moderate exertion (walking), however, my needs vary widely.  At near-total rest (driving or sitting in a chair) I can maintain 90% reliabily.  However, as soon as I get up, say to go to the bathroom, I shoot up past 5L to keep above 90%.  I believe that an increase in requirements could happen at any time, so I preparing for the next one.  Since I still like to dabble in tech, this is actually a good outlet for me.

      Best of luck on your trip.
      daryl

      • This reply was modified 4 months, 1 week ago by  Charlene Marshall. Reason: formatting
      • This reply was modified 4 months, 1 week ago by  Charlene Marshall. Reason: tagging
  • #19027
     Jan Riche 
    Participant

    Hi,

    This is my second attempt to use this forum. Hope it works. Oxygen suppliers have been one of the most trying thing about my IPF. Luckily I have had really good advocates that worked for my pulmonologists. One from Jewish National in Denver worked to get me set up with Enogen to rent a home concentrator and POC. I started out with overnight and advanced to portable needs fairly fast. I started O2 in 2014 at 3 liters continuous at night then advanced to adding 3 liters pulse for mobility later that year.

    Enogen provided me with their next smallest POC (Medicare did not approve the new smaller one at that time). They also provided a home concentrator. I really liked the convenience of both machines. I could carry the POC on a strap easily and the home concentrator fit into overhead sized luggage although I checked it to fly it made it easy to handle.  Since it was medical it shipped for free. The POC came with two batteries, one 6 hour and one 10 hour capacity. Enough to get me anywhere I was flying.

    Medicare paid part of the rent and my supplemental insurance covered the rest.  When my O2 demands increased the Enogen equipment was not adequate so I transferred to a local company and changed to bottle O2. I miss the Enogen, it was so convenient. I have been on the bottles for a few months now.

    Getting the Enogen equipment was not straightforward. They have two divisions and I do not believe they communicate with each other. One is sales and they will tell you they don’t rent but fail to say the other division does.  If you comb through the web site there is a number to call. I was lucky enough to have a nurse in my pulmonologists office who had a direct contact and she put me in touch with them.

    All my service was done through FedEx but it worked fine. Every problem I had was addressed quickly and efficiently. I highly recommend them.

    Medicare doesn’t buy them but does pay the charges for rentals.  As I had supplemental insurance I didn’t pay attention to how much they paid.  However, for me I found it much less than buying.  Hope this helps.

    Now another subject, I am very interested in the liquid O2 option but cannot find a way to access it. Does anyone know how to do this in the States. I would be grateful for any info.

    Jan R

You must be logged in to reply to this topic.

Copyright © 2017-2019 All rights reserved.

©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account