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    • #16261
      Josie
      Participant

      Hello

      I hope folks are having a good day. I was wondering if anyone had a similar experience to what I’m currently navigating in terms of the diagnosis journey. They found upper lobe predominant fibrosis on two x-rays, and am now being scheduled for a CT scan and various other tests to confirm and look deeper. My Pulmonary Function tests were reasonably good, mostly in the 90%s and my oxygen seems to be fine most of the time. The pulmonologist has said that the scarring they see in my lungs is most likely either from old TB (I once tested positive and was treated with antibiotics, although I never knowingly had active TB) or it is from chronic hypersensitivity pneumonitis (CHP), possibly caused by hay (I’m a horserider) or by mold (I have water damage in basement). I don’t know how they will tell the difference, but I assume there will be some signs on the CT to distinguish which it might be (??). The pulmonologist suggests that old TB scarring tends to be stable, and he didn’t seem to think that was anything to worry about and suggested that any shortness of breath may not even be related; however, CHP with fibrosis can behave more progressively, and as I understand it, is more akin to IPF at least in some cases.

      Has anyone had a similar diagnostic journey? Not sure what to expect. Maybe everything will be perfectly fine if old TB scars? I know my symptoms are very mild compared to other people (harder to walk up stairs and hills, and less stamina than I used to have, occasional tickly cough, but otherwise pretty well).

      Josie

    • #16278

      Hi Josie,

      Nice to hear from you and I hope you’re having a nice weekend!

      Thanks for starting this thread, really interesting topic. When do you have your CT scan to check into the fibrosis more deeply? Did you have a high-resolution CT scan (HRCT) upon diagnosis? Just curious as lots of people do, but unfortunately it also seems like lots don’t. It’s a really good test to investigate or learn more about the type of fibrosis found in the lungs. I am guessing the proper physician will know the difference in the scarring of old TB vs. CHP, but yes, I ponder that with you, I’d have no idea how it would show up and look different. Did your doctor think it was IPF before or has he not diagnosed anything yet?

      Sorry I can’t really share any specifics for this Josie, I don’t have much experience with it. However, I know some wonderful folks on the forum do have experience with HP so I am hoping they connect with you 🙂

      Talk to you soon, and if you wouldn’t mind, please circle back and let us know how your appointment goes.

      Charlene.

    • #16300
      Josie
      Participant

      Hi Charlene,

      Thanks for your reply. I am waiting to get the date for my HRCT but they said it would be pretty soon, so I’m assuming sometime in the next few weeks. I’m quite anxious to get a more definitive answer, as to date, all I have is the two x-rays that apparently showed the upper lobe fibrosis so do not have a proper diagnosis yet. I will let you know how it goes. My doctor seems to think it’s either TB scarring or chronic hypersensitivity pneumonitis.

      Josie

      • #16305

        Thanks for connecting back with me Josie, and I hope you had a nice weekend.
        I can imagine you’re anxious to get a more definitive answer, and I hope the HRCT sheds some light on the doctor’s thoughts for you. I remember how much angst I was filled with while I was waiting for a final diagnosis, it is such a hard thing to be patient sometimes isnt it? Please do keep me posted with the HRCT and goodluck on both that and the Methacholine testing.

        Regards,
        Charlene.

    • #16327
      Sheila Blanchard
      Participant

      Hi Josie I too had TB once when I was 12yrs old again at 17 am now 79. I was diagnosed with IPF in June 2016.by Pulmonary Biopsy.Lately I have not been feeling very well,short of breath and a lot of coughing,maybe due to the weather it is very cold here in Canada.anyway maybe your Dr.will suggest doing this. Hoping this will help.

    • #16332

      Isn’t this Canadian winter brutal Sheila? The last few days have been terribly cold, and tomorrow (where I am) might be the coldest say my province has ever seen. Not funny ‘old man winter’! Stay warm, and I hope you start to improve symptom-wise, so sorry you’ve been unwell. I’ll be thinking of you and hoping you recover soon.

      Charlene.

    • #16334
      Josie
      Participant

      Thanks for your reply Sheila and Charlene. I’m sorry to hear you are having some struggles currently Sheila. Did your doctor feel that your fibrosis had anything to do with your TB? I am also finding this cold weather to be really challenging here in Canada; these temperatures make breathing very difficult outside, and I get a cough and a croaky voice every time I go outside it seems. I hope you both stay warm over the next few days; it’s supposed to be terribly cold. Wishing you some relief.

    • #16338

      Thanks for your kind words Josie, I’m wishing you some warmth and relief amidst this cold as well. I couldn’t believe it today when I looked at the forecast. I won’t be going outside at all tomorrow, it causes too much pain in my chest to breathe in such cold conditions and I would fear my oxygen cannula would freeze as well. Stay safe and warm!

      Charlene.

    • #16372
      Sheila Blanchard
      Participant

      Hi Charlene and Josie yes the weather is bad very cold I live just north of Toronto in Caledon , no Josie the Doctor didn’t seem to think the IPF had a connection to my TB scars but she really didn’t know for sure.Keep warm.

    • #16728
      Lyle Schoelkoph
      Participant

      I have Hypersensitivity Pneumonitis, My doctor has never said chronic though. I need oxygen mainly when I exercise. I have the coughing and shortness of breath everyday. I have always been anti drug, but now I was put on cellcept,

      ( Immunosuppressive Rejection Drug), Prednisone and a bactrim antibiotic (Sulfametnoxazole/Trimetho). The cellcept is the same drug they give to transplant patients.  Because it lowers your immune system the doctor started me on the antibiotic. The jury is still out if these 3 drugs are helping. I have heard some members talk about essential oils, but I would be very interested in knowing which one.

    • #16754

      Hi Lyle,

      Welcome again to the PF forums – I’m glad you’re here. Thanks for sharing your experience with HP, we have a few members working through the management of that diagnosis as well. What was the reasoning behind the doctors putting you on Cellcept, Lyle? Was this in response to worsening symptoms or just a general treatment protocol for your specific illness? Curious to know 🙂

      I hope the combination of the three drugs helps a bit. Are the antibiotics for a specific course/length of time or will you be on them for the duration of being on the Cellcept to prevent as many infections as possible? Sorry for all the questions!

      I use essential oils, mainly when I am sick or because I like the scent of them. What would you be looking for out of them specifically? To help with things like congestion, breathing, etc. I have a few I could recommend and then of course, I love lavendar for sleeping. My biggest suggestion here is the importance of getting therapeutic grade oils or certified pure. I use doTerra oils but there are lots out there at the same quality 🙂

      Hope this helps!
      Charlene.

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