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    • #25782
      Trixie
      Participant

      Hi everyone I need to get some info ahout oxygen to help me breathe easier.Anyone with IPF that has oxygen to help plse?

    • #25784
      Mark Koziol
      Participant

      Hello Trixie, supplemental oxygen has to be prescribed by your physician. Several tests will have to performed; lung function test and a 6 minute walk. Please talk with your physician about your concerns. Take care,  Mark.

    • #25792
      Bob
      Participant

      I fully understand the value of these tests, but at present it is virtually impossible to be allowed to take them in this Covid19 environment.
      So what is “plan B” ? that will enable our physician to prescribe
      supplemental or ambulatory oxygen for those who need it
      …or do we have to buy it on the open market?

      Bob Osborne

    • #25795
      Doug Jones
      Participant

      Hi Bob–as Mark mentioned, you will need a prescription from your doctor for oxygen.  I have IPF and need oxygen.  Medical facilities have developed COVID-19 protocols which protect both patients and staff when procedures such as a Pulmonary Function Test ((PFT) and 6 Minute Walk Test (6MWT).  I had a PFT performed in July 2020 and have another one scheduled for January 2021 along with a 6MWT.

      For additional professional assistance you may want to contact the Pulmonary Fibrosis Foundation Support Line.

      “Call Our Support Line! For those living with pulmonary fibrosis, obtaining the most accurate and current information can be a challenging and frustrating task. In response to these concerns, the Pulmonary Fibrosis Foundation launched the PFF Patient Communication Center (PCC)”. The PCC, a dedicated call center, provides patients, caregivers, and health care providers with the most up-to-date medical information, communicates the availability of support services, and provides information about other essential resources”

      • This reply was modified 1 year, 1 month ago by Charlene Marshall. Reason: formatting to remove code
    • #25796
      Doug Jones
      Participant

      Bob and Trixie–Sorry about the “messiness” of my response.  I copied the info from the PFF and it included all the formatting.  the phone number to call  is 844-825-5733 for the PFF Support Line.  Doug

    • #25801
      Randy
      Participant

      Trixie and Bob. I got asinged my oxygen supplier before leaving rehab. Yes, the doc has to prescribe it. The testing for the walk and breathing test came later. You will get walking test everytime you go to the lung doctor to see how your progressing and what drugs to put you on. The drugs are common ones. To get on the more advance(only 2 right now) you will need the big test. There are alot of drugs being developed right now. The drugs now have side effects that I don’t want. Cannot wait till the ones in the final stage of testing get approved. There are a couple right now that are showing promise. Hopefully you can get into an expermental program. You have to have a minimum oxygen exchange rate on the test. The only problem I am having is getting the oxygen concentrator at home to go high enough. If I am just setting and doing nothing, a setting of 5 is fine. But getting up to do anything I need at least a 6. Sometimes that isn’t enough. So my doctor put in an order for one that goes to 10. Still don’t have it and that was 3 months ago. So, they gave me 2 of the 5s and it works, but boy, does it put out the heat. Won’t need a furnace in that room this winter. Hope I gave you two some answers. Good luck on God bless you .

    • #25810

      I fixed the formatting to remove the code/jargon to your post @dejones8576 … all good 🙂

    • #25814

      Hi @bob-osborne ,

       

      Thanks so much for writing, though sorry to hear getting oxygen has proven to be difficult. Despite COVID, I believe getting the tests done should be prioritized, as it’s dangerous to be without enough 02. Can you talk to your physician, or advocate for the importance of getting these tests done to obtain oxygen and not wait? It’s irritating that getting a life-saving therapy, like oxygen, is so difficult for patients. How frustrating!
      Char.

       

    • #25817
      Bob Rawlins
      Participant

      It can be somewhat tedious and confusing when it comes to picking an oxygen supplier.

      i made the mistake of not asking enough questions and calling several companies before choosing a supplier.

      i currently use Lincaire and I believe they are nation for the most part. They have been excellent for me out here In Ohio. Actually the delivery people have become friends and they take good care of my needs. Important to have that relationship, it really helps.

      if you plan on traveling while in oxygen you will need a national carrier. It is much more cost effective and eventually getting a POC in combination makes travel so much easier.

       

      Once you get

    • #25818
      Bob Rawlins
      Participant

      Once you get your Doctor prescriptions call around based on what you need.

      i would suggest thinking about the kind of lifestyle you are or going to have.

      This will give than and you the best expectations.

      Good Luck!!

      breathe-easy!!!

       

       

    • #25821
      Bob
      Participant

      Charlene, Doug, Randy and Bob:
      Many thanks for you kind words and suggestions. I was jumping the gun somewhat as I haven’t applied for portable oxygen yet, but was anticipating hearing that I wouldn’t be able to get the tests because of the Covid 19 uptake.
      I will be having a “by computer screen” consult in two weeks with one of the doctors treating me so I will see what he/she says.
      Again, my thanks.
      Bob

    • #25826
      Sam Gilmore
      Participant

       I have IPF for 4 years now and doing good I do use Oxygen as needed not all the time. But yes it does help when I become tired or short of breath. Your Doctor does have to prescribe it but its not a big deal . Talk to your Doctor. The test is very simple just a matter of checking your oxygen level.

       

      • This reply was modified 1 year, 1 month ago by Sam Gilmore.
    • #25829
      Sam Gilmore
      Participant

      My United Healthcare insurance covers Oxygen it cost me about 37 a month for a portable and a stay at home Oxygen devices.

    • #25833
      Karen Martin
      Participant

      I had a PFT done in late September and, because it was done at the hospital, I had to have a COVID test done the week before. The hospital set it up and it was done through a drive-thru set-up. Since I was cleared, I was allowed to have the PFT done the following week. Even in these times, you can still have tests done if you need them. Good luck getting things set up so you can have the oxygen you need.

    • #25845

      Hi Bob,

      No problem, our sincere pleasure to try and help! I hope your virtual appointment goes well with the doctor. If you can/are interested, circle back and let us know what he/she says regarding oxygen. Hopefully covid-19 doesn’t interfere with anything.

      Take good care and keep in touch!
      Charlene.

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