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    • #12259

      Living with pulmonary fibrosis means that at some point of your life, you’ll probably need some extra help to get through the day and the use of oxygen is one of the more common treatments.

      Columnist Kim Fredrickson reflects on the day she learned she needed supplemental oxygen, and shares how the doctor broke the news to her in her column “The Day I Found Out I Needed Supplemental Oxygen“.

      How were you told that you needed to use supplemental oxygen? What did you like about how you were told, and what do you wish had been different?

    • #12428
      Evertt Eudy
      Participant

      Just diagnosed 5-4-18, was put on 2 ltrs. Oxygen, 02 levels off ox. Were in the 70’s…on ox. 93 x 95..Noticed that if I take off the oxygen for about 15 mins with little activity, it drops into the  60’s . Still havent been told what stage I am in. Wont get my lung function test until June 19th. Just wondering what thoughts are out there ?

    • #12431

      Hi Again Evertt,

      Were you put on 2 litres of oxygen 24/7 or during periods of exertion like walking or running errands? Upon examination, did your doctor hear the crackling (similar to velcro, is how it is described) when listening to your lungs, and did you have a HRCT scan? Sorry for all the questions, these are just really important pieces of information that help the doctors determine both your diagnosis as well as the staging. Many factors go into consideration when doctors try and determine the stage of someone’s IPF. Just curious to hear 🙂

      Thanks,
      Charlene.

    • #12450
      Evertt Eudy
      Participant

      I was put on oxygen 24/7 for now until I have a full lung function test on the 19th of June. Yes there was cracking in my lungs. Not sure what a HRCT Scan is. Not to worry about the questions. At rest my 02 is about 90-95. But if I take it off to shower or anything with minor exercise, it drops into the 70’s quite soon. Thank you for your help.

      • #12461

        Hi Evertt,

        Thanks for sharing a bit more of your experience with us. So sorry to hear of your diagnosis, and need for supplemental oxygen 24/7. I found it so hard to accept that I needed to be attached to an oxygen tank/bottle/concentrator as my lifeline, so I understand many of the emotions associated with newly using oxygen. An HRCT is a high-resolution CT scan which is often the most helpful (or so I’ve heard) diagnostic imaging test that can be done to diagnosed IPF. Sometimes doctors do this, sometimes they don’t. I didn’t have one done as they were certain enough with my symptoms that it was IPF. However, I have heard in hindsight that many patients get the HRCT scan.

        Gosh, I can’t imagine how you feel with your oxygen sats in the 70s if you take off the oxygen. That must feel terrible for you! There is a thread on this forum about showering with oxygen, as another columnist just wrote a column about that. Feel free to have a read if it would help you sort out how you can shower with your oxygen on (to avoid the saturation drop) 🙂

        Take care,
        Charlene.

    • #12478
      Evertt Eudy
      Participant

      Just tested my 02 again….with 02 on, my 02 saturation reads 95/97  @ 3 Ltrs. Per min. I took it off and walked around the room several times, put my 02 meter on and it dropped to 78 very fast !  Still watching it with the meter still on you can watch it drop from 78,….clear down to 70…Then taking deep breathes, as much as I can it increases back up to the mid 80’s and stays in that area until I feel the need for 02 again, and put it back on…within a few minutes it goes back to mid 90’s again !…I am very confused.

      Remember I have NOT had my lung function test yet, not until June 19th. This waiting around with only an inhaler is flustrating and depressing, not really sure how bad I am or what stage am I in….?  Sorry to keep repeating the same thing, but I am just trying to be as clear as possible.  Any ideas at what stage, or just how bad is this ?  Thank you very much for responding !

      • This reply was modified 3 years, 6 months ago by Charlene Marshall. Reason: formatting
      • #12490

        Hi Evrett,

        Thanks for writing. I know it sometimes feels helpful to “test” our lung function by seeing how they respond with and without oxygen, exertion, etc. but please be careful while you’re doing this. While oxygen saturations in the 70s may not cause shortness of breath (even just for a few minutes…) but while it is that low your other organs are under-oxygenated, and they need sufficient oxygen to function and not go into failure. I am not a doctor by any means, but I fear that repeating these tests where you are watching to see what your oxygen does, means that your body isn’t getting enough. Just please be careful is my only piece of advice.

        It does sound like you are needing the supplemental oxygen, as the saturations (90s) are good when the oxygen is on. This could mean a number of things, but most notably that your own intake of oxygen isn’t fully reaching your lungs.

        What inhaler did your doctor put you on? Is it a rescue inhaler like ventolin or is it a steroid to help reduce inflammation like Symbicort of Flovent? I am on both so am just curious …

        Thinking of you!
        Warm regards,
        Charlene.

    • #12500
      Evertt Eudy
      Participant

      Hello Charlene, thank you for responding again, And for your concern about self checking my 02 levels myself, I understand

      The pulmonary Dr. Put me on 1 inhaler, 1 puff 1 time a day, its  Stiolto Respimat, ( Tiotropium  bromide and olodarerol ). Not sure if its a steroid or not, thanks again…

    • #12501

      Hi Evrett,

      Thanks for your reply, and understanding my concern about self-checking your oxygen sats. I just don’t want anything to happen to you, and I learnt the hard way when I was first diagnosed, how quickly things can deteriorate without sufficient oxygen. I didn’t want to wear my oxygen at first, and kind of “took a stance against it” (for lack of a better word) because I didn’t want to accept I needed it. This was a bad idea, as I had an episode that landed me in hospital very quickly. All this said, I wish I could be more helpful for you as I know it is tough to only have pieces of information, as opposed to the whole picture of your diagnosis.

      Hmm… I haven’t heard of that inhaler, but others may have. Do you find it helpful at all, or are you taking it more because you have been prescribed? My steroid inhaler I find I don’t really notice a difference but have to take it because I was told to. Whereas my ventolin, surprisingly does seem to make a difference especially to alleviate my cough and shortness of breath with any type of exertion.

      Hope you continue to do alright…
      take care,
      Charlene.

    • #12509
      Aishia Moaishia
      Participant

      I was originally diagnosed in 2015 but it was early and I wasn’t symptomatic. In December I had my yearly HRCT and there was some progression as well as PFT’s in May of 17 and November of 17 when my function dropped from 68% to 33%.  I had a 6 min walk test in Febuary that resulted in me needing up to 6L of oxygen with exercise only. Otherwise at rest and normal activity my O2 stays above 90. I was so angry when I learned I needed supplemental oxygen with exercise. I know that sounds silly. I did get a little short of breath but nothing abnormal with exercise and I really just attributed it to being overweight and out of shape. I was not expecting the need for oxygen. I have adjusted now and I notice I can exercise much better with the supplemental oxygen.

      • #12524

        Hey Aishia my friend, I am so happy to hear from you!

        I know I owe you a direct message, and will respond shortly! I forget if I have asked before, but did the doctors ever suggest any cause for the decline in lung function from 68% to 33%? Any mention of a viral or bacterial infection causing part of that, or whether or not it was just disease progression? My PFTs are anywhere between 30-38% usually and depending on the day, how I am feeling overall. This was a pretty gradual progression though, so I can’t imagine going from 68-33% if it was at all fast for you.

        Glad you’ve been able to adjust to using supplemental oxygen… I agree, it definitely takes time, especially when you’re told you need it unexpectedly. Will message you shortly 🙂

        Charlene.

    • #12510
      Roger Wenschlag
      Participant

      The oxygen tests are critical for you and your doctor to understand how well your lungs are functioning.  Two critical measures are forced volume control (FVC), and diffusion (DIFF).  FVC measures how big your lungs are and how fast the air comes out when you exhale.  DIFF measures how much oxygen you take out of the air you breath.

      The tests are measured against how well a person with healthy lungs your age, size and weight does on the same test.  So, for example, if you had a DIFF score of 53% you would be taking in only 53% of the oxygen that a healthy person would.

      The FVC score is established similarly.  The FVC stages are: Stage I:  FVC of 70-100, Stage II: FVC of 50-70, Stage III: FVC of 30-50, Stage IV: FVC of 0-30

      My pulmonologist is most concerned about the DIFF score.  I don’t understand why you have to wait until June 19 for the tests, but good luck with those.

      Another issue related to operating at low oxygen ratings is the potential for damage to heart and circulatory system.  If you are exerting and down around the 70’s SP O2, check your heart rate.  You might even feel your heart pounding in your chest.  Not a good thing if you can avoid it.

      When I got the POC prescription I wasn’t too worried about how I would look using it.  What bothered me most was having to cart the thing around to dinner, theater, games etc.  But, I’ve found that most people in the public convey a sense of understanding and empathy, sometimes even opening and holding doors for me.  And, as an old man (77 years),  I take advantage of that.  I’ve also found that in stores and restaurants younger women, my daughter’s age, often give me a knowing smile as if to say, “I’m glad you’re out and about old man.  Have a good day.”

      At any rate, I hope you can find a local PF support group, and share your concerns and seek information from them.  We have a good on in Minneapolis, MN.  Good luck.

      • #12525

        Hi Roger,

        Thank you for such a thorough explanation of your understanding of the staging. This was helpful for me, so I would imagine that Evrett will find it helpful as well. I understood the FVC better as a lung function measurement than I did the DIFF measurement, so thank you for providing that clarification. Unfortunately it looks like I measure between stages III and IV, depending on the function test as it changes a bit with how I am feeling, fatigue, etc.

        I feel bad that Evrett has to wait as well, and hope June 19th comes quickly as I know the angst of waiting for appointments!

        Thanks again for sharing your experience with using supplemental oxygen as well Roger; I applaud your attitude and hope people still keep doing kind things for you to assist you.

        That would be a good idea to look into Evrett; seeing if there is a local PF support group in your area. The Pulmonary Fibrosis Foundation has a listing of support groups across the US, a good place to start if you’re interested.

        Take care,
        Charlene.

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