• daryl-long

    Member
    May 8, 2019 at 6:41 am

    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

     

     

     

    • Charlene Marshall

      Member
      May 8, 2019 at 1:38 pm

      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.

  • steve-dragoo

    Member
    May 8, 2019 at 8:40 am

    @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

    • daryl-long

      Member
      May 8, 2019 at 4:26 pm

      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

  • jan-riche

    Member
    May 9, 2019 at 9:59 am

    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

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