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    • #27059
      Ray
      Participant

      I’m not sure if anyone else has this problem but it seems like my family doesn’t understand that my shortness of breath doesn’t directly correlate to my oxygen levels.

      I don’t require supplemental O2 when at rest but I use 6L during activity.

      During activity I get short of breath but my oxygen level stays “normal”.

      Can anyone help me with explaining this to my family. It’s very frustrating trying to get this across.

    • #27063
      Mark Koziol
      Participant

      Hello Ray, the clinical term is dyspnea. Unfortunately, you may have some other medical condition going on right now that is causing your shortness of breath. I am suggesting you notify your pulmonologist about your condition. It’s possible this problem can be rectified. Take care, Mark.

    • #27064
      Mark Koziol
      Participant

      Hi Ray, I spoke with a respiratory therapist and here is what she said this is very common and often has to do where the damage in your lungs is located. Mark

    • #27129
      Marianne
      Participant

      Hi All –

      I am not on supplemental oxygen yet but have some shortness of breath when exercising or walking up steps.  When I check my oxygen levels with the pulse oximeter they are usually in the 90’s.  I asked my pulmonologist why this happens and he said it is quite common with exercise when a person has IPF.  This is happening more frequently.  I am sure we will discuss at my next appointment in March.  So far my PFT have been OK.  I am sure I will have PFT again in March.  Right now I am on a 6month schedule of visits and PFT.  Every 3 months for liver panel bloodwork.  So far that is good too.

      Hope everyone is doing well and staying as healthy as possible.

      Marianne

      Marianne

      • #27141
        Mark Koziol
        Participant

        Hello Marianne, I’m happy you spoke with your physician about your shortness of breath and he elaborates more during your visit. Keep staying active, have a great breathing day. Mark

    • #27138
      Ray
      Participant

      Thanks Mark

      My Rice Krispie lung sounds are in the lower half of my lungs.
      Good news. I have now passed the 4 year mark of my terminal dates. Latest PFT is just a tad better than the last and all have been level.
      I miss PT. With the concerns we have about the pandemic they have been cancelled and I haven’t really left the house for 327 days. The elliptical and free weights are ok but I miss my PT buddies. Waiting on vaccinations to catch up around here.
      Sorry. I tend to ramble lately. Thanks for listening.

      • #27140
        Mark Koziol
        Participant

        Hi Ray, it’s great you had an improvement in your pft. It sure beats losing lung function. I know what you mean by the camaraderie that is missed by not being able to attend rehab with your workout buddies. I hope you and your buddies get vaccinated soon so you can resume your routine and your talk sessions. I hope you have a great breathing day today, mark.

    • #27155
      Jofac O’Handlin
      Participant

      Hello Everyone,

      I was prescibed oxygen just over a year ago, both portable and house cylinders. This had been determined by a walk test. I accepted them, tried one of the portables, but felt little value. My wife and I continued our late night walks, 40 to 50 mins. About 3 to 5 km. This was everynight, weather permitting. A good stride along the flat promenades, slow up the hills.

      That was until about 10 days ago. Suddenly, I hit the buffers. I had realised in the last couple of walks that maintaining the pace and the uphills was becoming difficult, to the extent that Susan helped by pushing me up the hill home. I tried the ambulatory oxygen which I found unhelpful.

      After that evening, I suddenly found the need  for sedentary oxygen. My resting O2 levels fell from the 96 to 92 range, into the 88 to 85 range. Climbing the stairs to bed resulted in a traumatic coughing fit. Is this an exacerbation or what? The latest telecon with the consultant, and visit to the GP indicate that I should prepare myself for the pathway! Such a change in under 2 weeks, and I was really looking forward to getting my covid jabs.

      They have prescribed extra medications, but purely paliative to ease the distress. Typing this my levels are 94%/61bpm on No.2 setting on the Oxygen. So, from a wandering happy minstrel to an unhappy cabbage in 2 weeks.

      From mountain runner in 2012 to couch potatoe in 2021.  Now constrained to an oxygen cylinder is a real setback.

      Some good news may have a buyer for our farm, our home for 55 years!

      Good wishes to all contributors, Joe

       

      • #27167
        Mark Koziol
        Participant

        Hello Jofac, sorry to hear about your recent troubles. I sincerely hope this is a bout with increased inflammation rather than an exacerbation. If it is an exacerbation my hope is that it is an acute exacerbation and you regain sone of your lung function. Take care, Mark.

    • #27162
      Rosanne Matzek
      Participant

      @jofac-ohandlin

      Hello Joe,
      I just wanted to give you a verbal hug. I too was a mountain hiker just two years ago and now can barely walk up stairs. Hiking has been one of the hardest things to give up. My husband and I live on a farm also and I still walk the fields weather permitting but with the rolling hills we have that may not last long either. I least we can still watch the sunrises and sunsets over the land.
      My thoughts are with you. Take care,
      Rosanne

      • This reply was modified 5 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #27164
      Tomisa
      Participant

      Hello, All!

      As an African-American patient with Scleroderma and PF, I feel it necessary to point out that fingertip Pulse Oximeters fail to accurately detect low Oxygen levels in individuals with dark skin, Blacks in particular. This problem was reported in the December 17 2020 issue of the New England Journal of Medicine, as I recall.

      Pulse Oximeters actually overestimate Oxygen saturation in dark-skinned individuals who are hypoxic. This problem is compounded in people with dark skin who are hypoxic and who also have low hemoglobin.

      Due to Scleroderma, I have poor perfusion in my fingertips and toes. I am also chronically anemic with chronically low hemoglobin. So, I am one of those patients who has a problem getting an accurate reading from a Pulse Oximeter.

      Although there are other reasons why people may feel short of breath without having low Oxygen saturation, that Pulse Oximeters routinely overestimate  blood Oxygen levels in hypoxic dark-skinned patients is something which must not be overlooked.

      For years, I had been short of breath despite having normal saturation readings on fingertip Pulse Oximeters. My physicians interpreted this as simple de-conditioning. However, my first abnormally low saturation reading occurred only when a Pulse Oximeter with a forehead sensor (the recommended method for  Scleroderma patients) was used.

      It was determined that I had been chronically hypoxic for years. I even used to have momentary grey-outs. Eventually, I developed Pulmonary Hypertension.

      The NEJM stated that fingertip Pulse Oximeters do not seem to overestimate Oxygen saturation in healthy individuals with dark skin, however. The Journal’s recommendation is that an Arterial Blood Gas test be given to patients with dark skin in order to check the accuracy of the reading.

      • #27166
        Mark Koziol
        Participant

        Hello Tomisa, thank you for this informative post. I have heard about the study but procrastinated to do the leg work. I am anemic too. I have autoimmune hemolytic anemia. My hemoglobin hovers in the 10.5s. When it drops below 10 is when I can feel it and makes me tired. I have a darker olive skin especially in the summer I don’t know if I have encountered the problem you have. It definitely gives us all something to think about. I thank you again for this valuable information. Have a great breathing day. Mark

    • #27187
      Jofac O’Handlin
      Participant

      Dear Rosanne,

      Thank you so very much for your virtual hug. I fully appreciate the climb of the stairs. I who used to run up several flights of stairs, at work by way of training, now climb one at a time slowly. This to avoid a paroxism of coughing at the top.

      Do enjoy your rambles over your fields and the sunsets for as long as you can in the good clean air.. To be friends in adversity is an unfortunate relationship, but thank you for your support.

      Kind regards, Joe

       

       

       

    • #27400
      Kathleen Ryan
      Participant

      The same is happening with me. My oxygen levels are ok, but always short of breath. I’m glad I’m not alone with this problem.

      • #27402
        Mark Koziol
        Participant

        Hi Kathleen, I’m sure you have read the thread. There could be several reasons why this is happening to you. Please speak with your physician and voice your concerns. There may be inflammation that is causing your problem, and in many cases this can be fixed. Have a great Saturday, Mark.

    • #27403
      Kathleen Ryan
      Participant

      Yes, thanks! I will definitely ask at my next appt

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