• Ipf or not

    Posted by almori on October 4, 2021 at 8:20 pm

    Hello all
    -In 2014 spot was found in my lung

    – pulmonologist said to monitor it every year

    – every year I took a breathing test and scan .

    -2019 I went to Ucla and pulmonologist said I have mild IPF

    – this year I got COVID in July

    – scan shows a mild enlargement of the PF

    – Ucla recommends I go on ofev

    – meantime I have sent and visited with my original pulmonologist every year with records .

    – my original pulmonologist does not agree with IPF –

    – he thinks the mild enlargement is the COVID irritation and will go away with steroid and time .

    -My current breathing tests are almost normal .

    – I have a little Cough but no shortness of breath .

    -my oxygen is 96

    Anyone experienced anything like this ?

    jan-mock replied 2 years, 2 months ago 8 Members · 7 Replies
  • 7 Replies
  • zach-adman

    October 5, 2021 at 9:14 am

    I wish!  Sounds like your in very good shape. I’m not a doctor so won’t give you any advice, other than take care of yourself and best of luck.

  • nina-merendino

    October 5, 2021 at 3:00 pm

    I had bronchitis  in 2018 and doctor ordered X-ray looking for pneumonia. Instead my chest was abnormal and had cat scan which showed both Owen lungs fibroid and ground glass and opacities. Then I had pulmonary blowing tests and were a little less than normal. No one told me it was a fatal illness. Then they said come back in a year. Did tests again and cat scan showed more inflammation honeycombing and they wanted me to have a lung biopsy. I was shocked and said no after seeing the thoracic surgeon. Decided to go to UW interstitial lung clinic and requested to see the director. He is a pulmonologist and a professor. I had tests again and chest more inflammation but pulmonary tests better and normal. I stilll have no could or sob.. I refinanced my house to put in a swim spa and I had been doing aqua aerobics everyday since November of 2020. Since then he ordered lung biopsy via thru my throat into lungs which showed mold. Then he did the gerd test theu my esophagus and I have gerd. I have another scan this month and pulmonary tests snd he wants me to do lung biopsy thru VAT. I went for second opinion and this guy explained every result. I have rheumatoid arthritis so he thinks I should have the biopsy to see mote I guess IPF vs. UIP but believes this damage in my lungs is due to rheumatoid disease and so I am changing doctors for rheumatologist to get more aggressive. He thinks the swimming and exercise is playing a good role cuz last pulmonary blowing was better then the last and is normal. The doctor at the U said I had maybe 5 years but I must have started this years before 2018! It is surreal when I have no symptoms and just pain in my body from fibromyalgia and rheumatoid. Wish I never had that ex ray!!

  • allan-byron

    October 5, 2021 at 4:49 pm

    Hello folks,

    hD same experience, Kaiser pulmonologist diagnosed me as having rheumatoid arthritis with auto immune disorder and started me on cellceph after doing a lung biopsy. I ask for a second opinion and went to UCSF. The pulmonologist diagnose me with IPF and started me with Perfinidone 801 3x a day.

    My Kaiser pulmonologist is doing a quarterly follow up on me, and I do chest X-ray, PFT, 6minute walk and lab test every 4 months. My challenges are refractory coughing, with phlegm. I requested a sputum culture and stain , but only Squamous cells were found. , which they said is normal flora, so no special meds was given to me. I currently take Tessalon pearls for cough, and sometimes mucinex tab or delays syrup which help. I also take Alcestis spray. For my persistent nasal drip, Flonase is what I take.

    if anybody had better suggestions pls share

    Allan Byron

    • pfcaregiver

      October 5, 2021 at 8:34 pm

      Allan my mom has constant nasal drip. What causes that?

      • Anna Jones

        October 6, 2021 at 5:07 am

        PFCareGiver,  I recently found out  from my GP that I have collapsed nasal valves – which has been making breathing more difficult and causing nasal drip.  It came on slowly.

        Try this test – buy some of the nasal strips (ex: Breathe Right Nasal Strips) that people use to open up their nose while they sleep and to prevent snoring and have your mom try them.  (Be sure the area you attach them is not covered in makeup or face oil.)  It this immediately helps (it did with me!) your mom may have collapsed nasal valves.  I had never heard of this but after looking it up it is vey common and sometimes just due to old age.  Good luck to you all.

  • sue-steele

    October 5, 2021 at 9:24 pm

    I had pneumonia last February 2020. While in the hospital had a cat scan. Pf was found. Since then I had broody done. No cancer,everything  normal. I was put on 40 mg prednisone a day. I have been taking it for five months. That’s all that was done. Dr. Wants me to go on cellcept. I must come off prednisone. I use 1.5 oxygen to sleep. I put oxygen on 2 most of the day. I walk treadmill I use 3.5 oxygen for 45 minutes. I just had breathing test and it’s at 72percent. I don’t know what will happen when I get off prednisone but I go to Yale Newhaven to see my pulmonologist. Oct 14,2001. He said I do it have IPF. I have Pf. I don’t really understand the difference. No one in my family has ever had pf or IPF. I just don’t know what to think.any suggestions?
    thank you,


  • jan-mock

    October 6, 2021 at 11:55 am

    Sharing information that has helped me:

    There is a Great Group on Facebook, “IPF Practical Support Forum” moderated by Burt Wilson.
    I have Learned Loads by reading the comments.

    Mr. Wilson has a vast & personal knowledge of IPF.

    One of the first things to do after receiving an IPF diagnosis is to get on a lung transplant list.

    Invaluable information there.

    I am now enjoying hospice care with morphine on this wonderful journey!

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