Pulmonary Fibrosis News Forums Forums Welcome Lounge BEFORE YOU START ON OXYGEN

  • BEFORE YOU START ON OXYGEN

    Posted by Doug on April 18, 2022 at 5:31 pm

    This is based on my experience as Medicare recipient. When your pulmonologist recommends oxygen, his/her office may or may not recommend a O2 provider. I STRONGLY RECOMMEND that you DON’T make a choice immediately but research what is available. In my case I went with a provider the office used in the past and I regret my choice. You should also research the Medicare rules as once you chose a provider you are stuck for five years with great difficulty changing. An important factor is whether you plan on flying places or making long driving trips.

    There are two basic types of O2 providers: local and national. I didn’t know the difference when I made my choice and ended up with a local provider. As we are retired and took several vacations a year requiring flying, a national provider would have been a much better choice. Whenever we flew, I would have to rent a machine at $100 a week that would be able to be used continuously overnight at our destination. At the time I was using a Respironics Simply Go Mini portable which I really liked and mainly used in a backpack. I had the large Respironics Everflo for home use; I have no complaints about the Everflo. So when I flew I rented a Simply Go (not mini) which could be used as a pull along portable and continuously overnight. Things have changed a lot since then as I am on tanks now and my flying days are over. (Expensive extra batteries are a necessity for traveling any distance.)

    The advantages of a National Provider, I’ve been told, is that at least some providers, with planning will have an overnight concentrator waiting for you at your destination hotel, etc. This means when you fly you don’t need to deal with two Oxygen machines through TSA and on the plane. I don’t know if there is a charge for that service; it may vary with the national provider. There may disadvantages to a national provider, but I don’t have that information.

    Anne replied 2 years, 1 month ago 7 Members · 13 Replies
  • 13 Replies
  • Keith Nelson

    Member
    April 19, 2022 at 4:25 pm

    Thank you – just now going through the process.  Very useful and informative information.

  • john styles

    Member
    April 23, 2022 at 10:00 am

    Last I read Medicare requires the provider to supply oxygen for 5 years of oxygen but only pays for 3 years and then the supplier must supply the oxygen machine and supplies at their own cost. The 5 years starts over if their is still a need for oxygen and the recipient can change suppliers.  Sounds like Medicare does not have faith that we survive beyond 3 years.

  • Cecil Zlotnick

    Member
    April 29, 2022 at 6:53 am

    Hi to all on the forum,

    I was diagnosed with PF (interstitial lung disease in November last year.  Results from my CT scan indicated that I have approximately 70% lung function.  I have been on Esbriet since January this year.  I’m taking 2 X 267 mg 3 times a day.  I tried 3 X 267mg 3 times a day but could not tolerate the side effects viz. dizziness, nausea and headaches.  My pulmonologist is happy with me being on 2 capsules, 3 times a day.  Side effects are very slight and some days I have no side effects. In order to prevent headaches I take 2 propain tablets when I awake in the morning even if I don’t have a headache.  Main side effects are after the first dose in the morning.  Later in the day I don’t have side effects.

    Upon monitoring my oxygen level with a pulse oximeter, I have 93-94% oxygen level and am not short of breathe.  At what oxygen level does one need to go onto oxygen?

  • Doug

    Member
    April 30, 2022 at 2:32 pm

    88% and below.  You should take a six minute walk test and do a sleep test to get the best info.  I first was put on a large concentrator  as a sleep test showed I dropped into the low 80s while asleep.  (While asleep you should be on continuous flow and not pulse) I didn’t need to use the portable concentrator unless I was involved in strenuous activity.  I’m surprised you MD didn’t order a Pulmonary Function Test and a six minute walk test.

  • Cecil Zlotnick

    Member
    May 2, 2022 at 10:01 am

    Hi Doug,

    Thank you very much for the information.  My pulmonologist tested me 3 months ago and found that my oxygen  was at 94%.  I had not yet started the Esbriet.  I’m due for a 3 monthly checkup next week and expect to have a full lung function test.

  • Anne

    Member
    May 10, 2022 at 3:16 pm

    I Have flown all over using simply go mini and 6 batteries I have purchased. I’ve been seen plugging into a wall or phone kiosk. I had too many problems with swelling and am now on only US flights. I, too, purchased a portable that I bought a suitcase for travel. It plugs into the wall or the ship or hotel room.

    I use a 2 when seated or riding my scooter. I can walk from the bed to the bathroom using a 5 (hightest my portable goes). I also use a 5 while seated in the shower, but I get winded while I’m splashing about.

    How long have you have you PF? I’m 5 years in from the beginning of my Radiation induced PF. I’m getting worse and am trying to find a partner similar to me.

    • Doug

      Member
      May 11, 2022 at 1:24 pm

      Anne, I first saw a pulmonologist in December 2013.  I was diagnosed with IPF in February 2015 and later after a biopsy in June 2017, the UIP type.  In August 2018 I started on O2.  I don’t think it’s possible to tell when the disease first started.  I’m on O2 24/7 and 10lpm is needed if I do anything other that be still.

  • Anne

    Member
    May 11, 2022 at 2:23 pm

    I try to walk from the house door down 3 steps and about 15 steps to my car. I sit and huff and puff for a few minutes. My machine only goes to 10 and I think I have it at 8 when I go to the car. I use an electric wheelchair in the house and a scooter when I go anywhere else.

    It sounds like you’re a little worse than me, but we are similar. I haven’t found anyone who has radiation induced Pulmonary fibrosis. My pulmonologist only treats me with doxicycline (cant take cillins) or a Z-pac. My sputtom has some yellow or yellow green in it and I cough it up every 30 minutes—so I’m on doxicyline. I saw my cardiologist (I have swollen feet and calves). He said I was wheezing and fluid in my lungs so have the PUM. order me meds.

    I’d love to keep in touch with what’s going on with your life. Do you have to take a big tank around when you leave the house? My friends or hubby get my scooter out of the trunk and bring it to the door for me. That works great and I’m only on 2-O2. I use a simply go mini.

    I’m off on a cruise in a couple of weeks. I love heated pools and go twice a week for arthritis exercise. I can walk and kick and do everything in the therapy pool (93 degree)

    • Christie Patient

      Moderator
      May 13, 2022 at 2:42 am

      Hi Anne, have you read any of our beloved Kim Fredrickson’s columns? She had radiation-induced PF as well after breast cancer treatment. Sadly she passed away several years ago, but she wrote several relevant books along with the many columns about her experience. You might find them useful. She was an excellent writer and compassionate advocate and friend to many in this community.

       

      • Anne

        Member
        May 14, 2022 at 7:17 pm

        thank you so much for letting me know about Kim Fredrickson’s articles. I just finished reading most of her first one and see myself in a couple of years, except she walks and I ride a scooter. Therefore, my O2 intake is quite low while I’m out and about. I can only walk 10 steps without needed more than 8 to 10 L-O2.

        I’m going to finish reading some of her articles.

        Thank you again for letting me know about another radiation induced PF.

        anne

  • Robert Gross

    Member
    May 13, 2022 at 12:25 pm

    Can you give some suggestions on finding a national provider? Or names?

    I did a Google search on “National Oxygen Providers” but I’m not sure I’m finding anything worthwhile. I have a portable oxygen concentrator which I can use while traveling but I would like a continuous flow one while on vacation. They have been difficult to find and what I found was rather expensive.

  • Doug

    Member
    May 13, 2022 at 1:38 pm

    When it was time for me to be placed on O2 my Pulmonologist’s office gave me a list of providers.  I would think your Pulmonologist’s office would have the names.

  • Anne

    Member
    May 13, 2022 at 3:31 pm

    My pulmonologist gave me Pharmaquip which is Johns Hopkin’s oxygen people. I have a big brown one which goes to 10 continuous flow and a simply go mini which is a 5, but not continuous flow.

    I have bought 2 of the
    Respironics EverFlo Home Concentrator
    Philips Respironics Authorized Dealer
    By Respironics
    SKU
    1020001

    I use is when I travel. It’s continuous flow up to 5 and about $1000.00. I pack it in it’s own suitcase with undies stuffed around it. It flies as disabled equipment free along with my scooter.

    I’ve bought from both the Oxygen Concentrator Store 888-505-0212 and Direct Home medical 844.798.0049

    anne

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