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    • #24179

      Just a quick note from me tonight, as I am once again feeling under the weather. Overnight last night I developed a seemingly random fever, which started with terrible chills and shivers that I could not get relief from no matter what I tried: heated blanket, multiple layers, tea, etc. I finally fell back asleep despite the shivering only to wake up soaked with sweat a couple hours later. Recognizing my fever broke, I got up to drink some water and check my temperature: 101.6.

       

      Low-grade fevers aren’t abnormal for me, and I’ve spoke to several other patients with various lung diseases who’ve told me they often suffered from fevers prior to their lung transplant as well. Some experienced various “bugs” or infections in their lungs as the culprit of the fever, whereas others were oxygen deprived and this was their body’s way saying I’m tired. That said, a fever of closer to 102 is cause for concern, and unfortunately this has happened to me a lot in the last few weeks.

       

      When I woke up after taking Acetaminophen this morning, the fever had drastically reduced. Aside from general muscle weakness and fatigue, I felt fairly well, however once the Tylenol wore off, the fever came raging back.  I realize I am probably just fighting something now, and I have been in touch with my transplant team as well, but this is happening more often as of late. For the last two months, fevers, with no other obvious accompanying side effects are something I am experiencing every few weeks.

       

      Has anyone else had experience with this?

       

      If so, how did you manage it or what did your physicians say was the cause?

       

      Thanks in advance.
      Charlene.

    • #24197
      Ginger Adelstone
      Participant

      Hi Charlene,

      I get short fevers daily. And most of the time they dissipate after a few minutes. If the don’t, and the Tylenol does not work, I get a hand towel and get it good and wet, and just keep applying it till it goes away I’ll put it over my forehead, the top of my head, and under my chin. That really works. Seems under the chin is sensitive to temperature.

      So glad you are on the Transplant list! I wish you the best in that journey! I had been off for awhile. Was sick with pneumonia in Jan/Feb. seems I’m still not 100%
      i hope you will be though!

       

      Ginger Adelstone

      • #28764
        Linda Buffa
        Participant

        I am new to PF and am struggling with  the fever..bouncing up to 102.1 and down, tylenol brings it down but only for a few hours. The chill and shivering is awful. I wonder if this is normal symptoms..I am recovering from covid…had the PF very mildly before but the covid pneumonia scarred my lungs along with PE blood clots.

        Good luck with your transplant. Prayers for you

        .I am not on a list. I used o2 last night for the first time in months to breath easier, plus albuterol.  Pulse is 85.

        Thanks for listening and if you have any advice feel free.

        Linda Buffa

      • #28888
        Kathleen Ryan
        Participant

        I often get the chills followed by being terribly hot at night, though I never took a temperature. Usually I’m ok the next day, but sometimes this is the precursor to a hospital stay. It seems that all of us have this chills/fever issue. My doctor won’t say it’s common with fibrosis, but it sure seems it is!

        • #28921

          Hi @kathleen,

          I completely agree with you – it seems that fevers or at least unstable temperatures is more common in PF patients than anyone wants to admit. Sure seems that way based on everyone’s contributions here. Thanks for sharing your experience, though sorry you can relate!
          Charlene.

    • #24233

      Hi Ginger,

      Thank you so much for writing to me and sharing a bit about this topic, although sorry you also deal with fevers and IPF! It’s been bizarre for me, and pretty unexplained but my medical team is investigating it now because they are getting pretty high occasionally. I’ll keep the wet hand towel under the chin in mind, that is really helpful information.

      So sorry you were sick with pneumonia earlier this year, are you almost 100%? It takes so long to recover from doesn’t it? I had it in November and it was just terrible. Keep recovering and hang in there, thanks again for writing to me about this topic!
      Charlene.

    • #24244
      Karen Martin
      Participant

      So sorry to hear you are dealing with the fevers, Charlene, but very happy to realize you are working with a transplant team. I hope the future holds many good things for you. Karen

    • #24265

      @casey

      Thank you so much Karen! I really appreciate your kind words, and happy to report that indeed the fevers are subsiding thankfully. I hope you’re doing alright during this tough time. Hang in there! Char.

    • #24329
      Jerry Genesio
      Participant

      I’m sorry to hear about the fever and malaise that you’ve had, Charlene. I’ve not had any of the ailments you mention and hope you’ve shaken them by now.

      Stay well!

    • #24343

      Thanks so much for the kind words Jerry! Happy to report the fever seems to be a lot less frequent now, and definitely not as high which is good news 🙂 Thanks for writing and keep in touch.

      Char.

    • #28767

      Hi @lindabufa,

      Thanks for writing and welcome to the PF forums. I’m sorry to hear you’re struggling with a fever; this was so concerning and frustrating for me when I was experiencing the same upon writing this post. I don’t know a lot about COVID recovery, aside from mine took about 14 days for my acute symptoms to go away but thankfully, my fever only lasted about 3 days… it was awful. Do you have any follow up appointments with your physicians about COVID? It might be good to get repeat diagnostic scans done, to check on your lungs and maybe ask them about the fevers?

      Take good care and as difficult as it is use 02, it really helps to use it as prescribed by our physicians. Thanks for writing and keep in touch!
      Char.

       

      • #28774
        Linda Buffa
        Participant

        Thank you, so encouraging..I was in the hospital 20 days..so scary, all alone and isolated.

        I just made appt with my pulmonologist and pc for Monday.

         

    • #28776

      So great to hear Linda! If you’re comfortable and think of it, please report back and let us know how it goes. Hopefully they can figure out the source of the fever and correct it relatively quickly. Im thinking of you!
      Charlene.

    • #28802
      Steve Dragoo
      Participant

      @charlene-marshall

      Hi Friend,

      Sorry to hear about your temp spikes.  Two thoughts: White cell count? Long-term side effects from covid?

      If the white cell is up you may be fighting a new infection – our immune system is highly important to us IPF patients. SARS 2 Covid 19 has similar attributes to SARS but thankfully not as potent as SARS is. I do wish I could help you more… – Steve

    • #28840

      Hi @steve-dragoo

      So nice to hear from you, as always friend and thanks for your kind words. Thankfully, the temperature spikes have settled down a bit and last bloodwork I did, my WBC was pretty good; not indicative of an infection anyways. Could be lasting side effect of COVID, everyone seems to be different in terms of side effects that don’t go away… we’ll see. As always, I appreciate your insight 🙂
      Thanks again and be well!
      Char.

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