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    • #32711
      Don Graybill

      Hi Fellow IPF travelers —

      Got a question for you.  I’ve had IPF now for about nearly 12 years.  I’m on oxygen 24/7 — at 2 lpm at night and from 3.5 to 5 lpm during the day.  During moderate exercise I can usually experience a saturated oxygen level of 95-99% yet my breathing will be rapid and labored (like 50 or so breaths per minute).  This does not make sense to me and I’ve not had a good explanation from my pulmonologist.  Have any of you experienced this?  I have found that sometimes I can “force” a slow-down by pausing a half second or so after each breath for several minutes.  That often reduces the breath rate to 35-40 breaths per minute.  Thanks in advance for any insight from anyone.

    • #32724
      Christie Patient

      Hi @dongraybill, I don’t have an answer as to why you’re breathing so rapidly but maintaining good saturations. My mom had breath rates like that when she was in an acute exacerbation, but it was accompanied by abysmal saturations and other debilitating symptoms. I am curious if you have been in pulmonary rehabilitation at all? Since you say you can “force” your breathing to slow with the pausing technique, I am wondering if you have learned any of the breathing techniques and exercises taught in P rehab. Pursed lip breathing, breath training, etc. Could be really beneficial to you. You should ask your doctor if you can get into it if you have not yet. Until then, there are some videos on youtube that might be helpful in retraining your breathing patterns, and maintaining your overall fitness, though it sounds like you are still pretty active.

      • #32734
        John Fraze

        Check your filters on your oxygen machine. You might need to clean them.
        check to see if your medical records show any stenosis in your pulmonary veins that run from your lungs to your heart.  There are four of them. If you have had a heart ablation there is a possibility your pulmonary veins have stenosis. A symptom of this is shortness of breath.   Ask you pulmonologist about pulmonary hypertension. Also ask them about your ejection fraction. I was officially diagnosed with IPF 3 1/2 years ago. I have been on OFEV ever since   I have also had 4 ablations for Afib. Two of my pulmonary veins have stenosis and I am scheduled for a heart catherazation next month to see if they can clear the stenosis.
        good luck on finding the cause of your shortness of breath

    • #32752

      How is your heart rate? When I get out of breath my heart rates goes way up. This breathing problem puts a lot of stress on your heart. My husband had emphysema and eventually his heart gave out. So be sure to keep an eye on your heart rate. I use an oxometer. Everyone with PF should have one.

    • #32760
      John Fraze

      I have two types of oxygen concentrators. One is continuing flow and the other is a pulse flow. I don’t know what you have but when you use a pulse flow machine breathing fast actually slows it down. The instructions with mine say not to breathe fast or deeply as that interferes with the rhythm of the machine. Just to turn the number of liters up but not to breath fast or deeply. Just breathe normally.
      hope this helps.


    • #32761
      MaryLou Ward

      I do the same thing but my respiratory rate only goes up to 30.  I try to slow it down by doing the breath hold and it does come down. Something sounds like your heart might be effected.

    • #32773
      Don Graybill

      To everyone — thanks for engaging with me as you’ve done.  I appreciate it!  You’ve given lots of great suggestions and I’ll be checking with my pulmonologist about it.

      Yes, Christie.  I was through pulmonary rehab over a year ago.  It would be great if I could do that again but I don’t think that’s possible.



    • #32847

      Don, try checking with the business where you had your rehab. The place I went to, you are welcomed to come back. I have to call ahead to see if there is room for me. I finished in  June and told them that I plan on coming back in late Fall.

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