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    • #27428
      Jill
      Participant

      Hi! Thanks so much everyone for all the kindness and knowledge you share!

      I have three questions about exacerbations. Our pulmonologist said they occur randomly but that’s so not a reassuring answer that I wanted to poll the hive mind. He said the anti fibrotic meds are the only way to prevent an exacerbation. (My husband is on ofev). He also said we’d know if my husband has one because he’ll end up in the hospital.

      Question 1: Has anyone here had an exacerbation but not needed to go to the hospital?

      2: If you’ve had one, do you know what caused it?

      3: What treatments did you receive, and or do for yourself?

      Thanks so much!

    • #27436
      Mark Koziol
      Participant

      Hello Jill, I can tell you first hand that you can have exacerbation and be on an anti fibrotic medicine. I was on Ofev and suffered an exacerbation and was hospitalized. My treatment was more supplemental oxygen as I went from 4 liters of pulse o2 to 6-8 liters of continuous flow. As you can see it was a drastic change and set my lung transplant evaluation into motion. My exacerbation was caused by the RSV I contracted. Here is a link from the pulmonary fibrosis foundation and info on exacerbations is on page 28. Take care, Mark.     https://www.pulmonaryfibrosis.org/docs/default-source/patient-information-guides/2017-pff-patient-information-guide.pdf?sfvrsn=39cd958d_0

      • #27437
        Kathleen Ryan
        Participant

        Thank you, Mark, for the  link. It’s very helpful

      • #27451
        Jill
        Participant

        Hi, Mark, thanks for your help! Can you please tell me how you were getting your 6-8l of continuous flow? Were you able to find a POC for that much or were you using either liquid tanks or gaseous tanks? Thanks

        • #27452
          Mark Koziol
          Participant

          Hi Jill, I had a home concentrator that went to 10 lpm and I used the E series tanks when I was out of the house. A friend built an insulated tank holding container that I placed in the back of my pickup. Every cpl days I would get 22-26 tanks. I was still working so I used the E tanks while I was work and any time out of the house. The custodians at my school would store them in their work area along with my electric scooter. I was fortunate to have wonderful colleagues and friends who would monitor me throughout the day, maybe too much but it was very much appreciated. I hope I answered your question. Mark

    • #27445
      Jill
      Participant

      Mark, that’s so helpful, thanks so much for sharing your experience and the link!

    • #27493
      Jofac O’Handlin
      Participant

      @jillgerber4gmail-com

      Reply to Jill,

      Yes I have recently suffered  what I can only interpret as a exacerbation. Up until the last few days of  January, my wife would encourage me to take a walk around our village, about 2.5 to 3.5 miles at a reasonable pace, taking it slowly up the hills. This was without O2.

      I had realised for some time that I was, during the walks, pushing my O2 stats down to lower than desirable levels. I’d had O2 prescribed a year earlier but after one test run had not used it.

      About the 27th Jan, I decided to use O2 on our walk, and it was a disaster.  From not using O2 it seemed that I was now dependant on it! My resting O2 sats had fallen from 92 -95 into the high 80’s.  Trying hyperventilating did not raise the levels sufficiently, so I became very suddenly Oxygen dependant.

      I did not go to hospital but did get an emergency appointment with the NHS gp. He seemed to go into overdrive, indicating that I was entering end of life, prescribing Oramorph, and Lorazepam to keep me ‘what’ sedated?

      What triggered the exacerbation? I don’t know. There was a mild temperature which forced a covid test (clear), and I was on a penicillin antibiotic at the time which mignt have encouraged a bout of thrush fungal infection.

      Treatment. I was prescribed the paliative drugs, which I have so far not taken. Plus counselling (sort of) ending with a DNR Order, great! Follow up today when I have been prescribed 2 oxygen concentrators. Should arrive tomorrow. Our small island does not provide a liquid oxygen option.

      Me? I have staged a little recovery I am sitting here without O2, at 92-93 sats. This slight recovery is a great relief to my nose. One side very tender. But my walking now has to be O2 aided, 4 litres. I have been able, as a terminal patient, to coerce my man to permit me an an antibiotic identified in a Swiss trial as a potential aid against IPF progession. Private prescrition self medication, no come back! He then flagged this as a possible conta to the effects of the OFEV my present main medication.

      Thanks to all who share their experiences. Warriors in adversity.

      Regards, Joe

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