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    • #27173
      Vishal
      Participant

      Hi all,

      Over the last week or so, my father’s breathing has gotten much worse. Not sure if it has anything to do with the weather but it went into the -15s here in Toronto, so it’s been quite cold. He was on 3.5L of oxygen for the last 6 months or so and now we’ve had to up it to 5L of oxygen. And yet, he’s completely out of breath just getting up from a seated to standing position. He starts panicking as well, which makes it worse. The 5L oxygen concentrator is at the maximum.

      We’ve called the respiratory therapist who is going to come assess him on Monday and provide us with a 10L oxygen concentrator – I’m going to call her again tomorrow to come and give us the 10L machine right away – I don’t think we can wait until Monday. I hope that will help him. Called the pulmonologist as well, who is going to take a week or so to get back to us so he’s of no help. If it gets really bad, we’ll call an ambulance of course but I’m just surprised how much worse it has become all of a sudden.

      Has anyone else here experienced a rapid deterioration and did an increase in oxygen help? What else can we do to help him?

      Thanks in advance,

      Vishal

    • #27177
      Mark Koziol
      Participant

      Hello Vishal, unfortunately, what your father is experiencing is normal. Hopefully, he is having an acute exacerbation and can gain some of his lung function back. In these situations, there is a number of things that could come into play. There could be inflammation that is causing the sudden increase of oxygen or the disease could be running its course. The doctor will be able to provide information based on an exam. There is a breathing method called the Buteyko Breathing Method, this may help ease the anxiety and he can focus on his breathing. You will have to guide him. There are some youtube videos on this method. They are quite simple but when someone is in a coughing spell and feeling anxious this is very difficult at first. Please ask your respiratory therapist when she comes in for suggestions to ease his anxiety, she may practice this method or the pursed-lip method, or she may have another suggestion. I hope your father has a great breathing weekend, take care. Mark

      • #27372
        Vishal
        Participant

        Hey Mark,

        Yes, we’ve been working on breathing techniques for awhile now and it’s kind of helped but not too much. My dad tries but says it’s very hard for him. We have the respiratory therapist coming for another visit soon, so I can ask her if there’s anything else that can help ease his anxiety.

        Since getting his oxygen upped to 10L/min (8.5 L/min at rest) he’s started to feel much better though.

        • #27377
          Mark Koziol
          Participant

          Hello Vishal, I’m happy your father is now receiving the appropriate amount of oxygen. It makes a great difference on how his day will go and the energy he will have throughout the day. I hope the respiratory therapist can offer some suggestions. Have a great weekend, Mark.

    • #27415
      Bobbie Brown
      Participant

      Vishal thank you for reaching out and creating this topic. I have recently been experiencing a decrease in my oxygen saturation. I was diagnosed with ILD in July of 2020. I had Covid-19 the last part of November 2020. Since the Covid I have been struggling with desaturation at 5 liters at home I would desaturate to 50 on my pulse oximeter. I am currently in the hospital. I have received 3 doses of 500mg of methylprednisolone via IV. I  am a bit better, but am still trying to find the right balance between what I need and can live with at home. I will look into the Beteyko Breathing method Mark mentioned.  I have been so exhausted and unable to participate in family life (cooking, chores, crafting etc…) I hope I find my answer soon.

      Bobbie

      • #27420
        Vishal
        Participant

        Hi Bobbie,

        I’m so sorry to hear about your situation. I’m sure the breathing exercises will help. Are you on oxygen supplementation? You should also look into getting a 10L oxygen concentrator or connecting two 5L ones. Ask your pulmonologist or respiratory therapist about what level of oxgyen supplementation can help you.

    • #27477
      Julie Grace
      Participant

      This article caught my eye as my husband has also had a deterioration in o2 levels. He has been on 5 liters for quite some time now & when he went for a routine visit in December to the Pulmonarligist I questioned if there was a stronger O2 concentrator that he could have. They recommended we hold off if possible & revisit this subject @ his next appointment in March. Come February he really started struggling & had to get him back to the Pulmonarligist which was no easy task. The Pulmonarligist told my husband that his IPF was progressing & spoke with us about having a visiting nurse & hospice services. Instead of ordering a 10 liter O2 concentrator he wanted us to try a Life 2000 ventilator. So he sent him home to struggle for another week before we received a visit from a hospice nurse, but thankfully she ordered a 10 liter O2 concentrator which arrived within 24 hours, which made a big difference for him. The life 200 ventilator ventilator came a few days later, but didn’t do anything more for him then his new 02 concentrator. The hospice nurse also recommended him to take Lorazepam to help with anxiousness/ restlessness/ sleeplessness which has helped.

      • #27484
        Mark Koziol
        Participant

        Hi Julie, I’m glad you were persistent in obtaining the home concentrator. I’m glad to hear your husband is doing better. We all desire proper medical care and thankfully caregivers like yourself step in and have to demand these services. Have great night, Mark.

      • #27716
        Vishal
        Participant

        Hi Julie, sorry for the late reply. I’m happy to hear you were able to get a 10L machine. My only recommendation to you is to be prepared for more – my dad deteriorated to rapidly once he needed 10L. We had to connect two 10L machines together – and then very soon that wasn’t enough either.

    • #27495
      Burma
      Participant

      I am sorry to hear your father is having a problem with shortness of breath.  It is very scary, I know.  I have been diagnosed with Pulmonary Fibrosis (2018) and take OFEV.  I am on 4 L oxygen., 24/7, for about a year now.  I was having a very hard time breathing just by taking a couple steps.  My Oximeter would go down to 74 and it would take 15-20 minutes to get it up to 90-92.  This went on for about two months, fighting it and being miserable.   I made the mistake of thinking it was just the PF and there was nothing they could do about it.  DON’T ASSUME ANYTHING!  Thursday morning I got up and decided I just couldn’t fight it anymore and called my Pulmonologist who advised me to go to the ER and get evaluated.  Long story short, after testing negative twice for covid-19, I was admitted to the hospital.  Of course there was lots of bloodwork, a CT scan, and an Echocardiogram.  The attributed the shortness of breath to some fluid on my lungs and once that was taken care of, my breathing got much better.  Of course, Pulmonary Fibrosis and many other lung diseases cause shortness of breath, but there are other things that can contribute to it also and it’s best to just go to the hospital and get checked out.  I am home now and still have issues but feeling a lot better and breathing better.  Good luck!

       

      • #27717
        Vishal
        Participant

        So glad that you were able to find the cause of the shortness of breath, Burma. We had the respiratory therapist check him out and she didn’t think it was fluid buildup or anything other than the fibrosis worsening. And the extra oxygen made an immediate difference.

    • #27496
      Anne Philiben
      Participant

      I’ve been puttering along thinking I just might live like this for years…slight increase in O2, decrease in activity.  Then Sunday night  (around 10PM) I went into my bathroom to get some pills, fell to the floor (Hypoxia?).  Got into bed and could not maintain my spo2 sats.  About 4AM in a panic I called for my brother to call an ambulance.  I really thought I was dying.   At the hospital I was given steroids, 15L forced heated O2.  My CT scan was a white sheet..ground glass opacities.  The Doc said I would not leave the hospital alive. But the steroids did their magic and I am home on 1.5 L. while at rest.  Need a bit more for walking.  The Doc (who is wonderful) reduced the prednisone to 60mgm a day today.   We will see how it goes. How Manny of these cliffs I will fall over we shall see.

      On 2nd thought I don’t think I should have held off for all those hours.   Also probably explained to my brother that I haven’t found a rescue inhaler effective.  Boy the had a hard time with the 911 operator.

      AND the care at the hospital was fabulous.

      • #27754
        Kathleen Ryan
        Participant

        Anne, I’m so sorry that happened to you. I know how scary that is. It’s so difficult to be clear headed when you’re in a panic. The first time this happened to me, like you, I waited for about an hour and tried nebulizer treatments and rescue inhalers. When the ambulance came, my oxygen was in the 40s. Since that night, I just call 911 immediately.

    • #27527

      @anphlbn

      Hi Anne,

      Oh gosh, I’m so sorry to hear of this experience, that must have been so scary for you. I’m so glad to hear you defied the odds and are now home with 02 on rest. I hope the prednisone continues to be effective for you (it sounds like it is) and that you had a positive experience in the hospital. Keep us posted and I hope you continue to improve! Did they say what the inability to maintain your saturations was caused from, anything specific?

      Charlene.

    • #27582
      jim nox
      Participant

      To all IPF patients who have recently experienced sudden and unexplained loss of pulmonary function——

      I do regular 6 minute walk tests to have an objective measure of my pulmonary sufficiency without going in for a PFT. I had the first Moderna COVID 19 vaccination about Jan 11 2021 and experienced no detectable  adverse reactions. About 4 days later, I noticed that I seemed to be needing O2 in situations not needed before. I performed a 6 minute walk test (and have regularly performed the test since). It is clear that I suffered about a 15% to 20% loss of pulmonary function beginning shortly after the 1st vaccine shot. Called my pulmonologist  and we agreed that the vaccination may have been the cause and I should not take the second shot. All 6MWTs since have remained at the lower rate without any measurable recovery. There is no certainty that there is a relation between the vaccination and the sudden decline, but I wanted to give everyone a “head’s up” about my experience. At age 83, I would probably take the first shot again, but not the second, as my Doc said “Covid would kill me for sure” if I caught it. So, I got some immunity, maybe at a cost of some additional inflamation/scarring and a 15% loss of  pulmonary function. Hope to do a real PFT in the next couple of months to better evaluate the decline.

    • #27722

      Sorry to hear about your adverse reaction to the Moderna vaccine, I had first and second injections with only very sore arm. I have not noticed a change in my breathing related to the vaccines. I am 69 years old.I am on OFEV and cell cept, I have been on bothe for 6 months and although my PFTs have slightly declined, I breath better and maintain my sats better, I would like to get a lung and will try and get my Dt to get me referred. My BMI has always been too high for a lung, until new, and I am now down enough to qualify I think. Wish me luck..

    • #27732
      Jofac O’Handlin
      Participant

      Hi Jim Nox,

      I had an ‘exacerbation on the 27-28 January. I’m not as disciplined in tracking the 6 mwt, but was doing 2 to 3 miles around our village in 40 to 50 minutes depending on our route. Suddenly, it all stopped, can only walk at slow pace, and needing oxygen support. A crisis. I’d had oxygen prescribed a year earlier, but refrained from its use.

      The exacerbation ocurred as stated, just at the end of January. A week or so later, 5th Feb., I  received my first A.Z. jab. My note is, had these events been reversed I would be asking the same question.

      I have had a limited recovery in the sedentary state, but not the active. Oxygen needed for any minor exertion.

      Best wishes, Brothers in adversity,

      Regards, Joe

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