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    • #26157
      Aurelia
      Participant

      hello everybody… I am currently waiting for a bronchoscopy for investigation on shortness of breath. I don’t have a cough but my scan showed some ground glass opacities and bronchiectasis.  The respiratory consultant said he didn’t think it was ipf and as I don’t show cackling noises but I am wondering if I am early stages.  I don’t have more shortness of breath on exertion, can do normal walking etc. and my o 2 levels are normal, I have a finger oxyimeter.   I am curious as to when people show shortness of oxygen after being diagnosed. My breathing is like I can’t catch  my breath but it’s slow and laboured rather than fast like I am sighing.

    • #26158
      Mark Koziol
      Participant

      Hello Aurelia, most will show shortness of breath as their lung function deteriorates. Sometimes the shortness can be a combination of your heart rate rising, physical activity, and a decrease in your oxygen even though it may be slight. Take care, Mark.

    • #26159
      Aurelia
      Participant

      Thank you Mark.  Does a ct scan always show Pf.?  My heartbeat does go up more than usual if I am walking or exercising.

    • #26160
      Mark Koziol
      Participant

      Hi Aurelia, sometimes the cat scan does not diagnose and a lung biopsy is needed in order to confirm. The lung biopsy is considered major surgery. Some hospitals recommend this procedure and some don’t. I did have the lung biopsy and didn’t have any complications. I needed a proper diagnosis of ipf in order to be prescribed the anti- fibrotic medicine that I was placed on. Take care, Mark.

    • #26168
      elizabeth martin
      Participant

      I am 71 yrs old, a retired registered nurse.  I had VATS (Video Assisted Thoracotomy) and a diagnosis of IPF in 2018, not sure why my pulmonologist chose that instead of a bronchoscopy. VATS is a very invasive surgery and very painful as rated by the NIH. The surgeon must go through your ribs to get the lung specimen, this involves damage to the ribs as well as nerve damage. The area around my right breast was so painful that I had to have narcotics to deaden the pain, and I have a high tolerance to pain and hate to take meds. That nerve pain continued for months, resulting in my no longer being able to wear a bra or to have anything snug covering my chest.  The pain where they cut through my ribs is transient, I can live with both it and the nerve pain. But, even though I am a retired registered nurse, and I did due diligence in researching VATS, I was totally unprepared for the pain to be so bad and to continue for so long. I would possibly have been better off having a bronchoscopy, but considering that the honeycombing was at the extreme lower lobe level of both lungs, it probably would not have been nearly as diagnostic as the VATs.

      My older sister died at the age of 60 from IPF. There are studies that suggest that some people are more susceptible to IPF who grew up on a farm, which we did.  Another issue is chronic GERD, which we both had/have, and the probability that acids enter the lungs and start the erosive process. So far I am only on meds for GERD and have not had to rely on oxygen yet . I do get winded with exertion and there are times that I feel no oxygen is available but those times are not regular or often. I have an appointment with my pulmonologist next month to discuss the antifibrotic meds.

      Best wishes to all, Hugs!

    • #26171
      Mark Koziol
      Participant

      Hello Elizabeth, the usual order of diagnosis for pf/ipf is X-ray -bronchoscopy-cat scan-VATS. I was told with my Bronchoscopy that a proper diagnosis was inconclusive. I’m sorry you experienced pain and are still dealing with discomfort. I was fortunate to have one of the best thoracic surgeons in the world do my VATS procedure. I had very little discomfort and was released two days after the procedure. On the other hand for my Bronchoscopy, I was not given any type of sedative and was given a spray in my throat to numb the entrance way for the scope. I was awake and hated every minute of it. I call it a caveman bronch. I hope you feel better and take care. Mark

    • #26225
      Mike Clifford
      Participant

      Hi Aurelia,

      Got my diagnosis of IPF about a year ago. Had a chest X-ray in the spring that showed interstitial lung disease. A high res CT scan was inconclusive so I had a lung biopsy. It was done using a DaVinci robot and was a breeze. I was out for it but it took all of 10 minutes and there was little to no discomfort. I felt like I could’ve gone home right afterwards but there’s a danger of a lung collapse so I had to stay over night. The chest tube came out before 7 am the next morning and all was fine. The chest tube caused more discomfort than the biopsy. Hope it goes well for you and they find something a little easier to deal with in your case. Good luck

      Mike

    • #26240
      Aurelia
      Participant

      Thank you Mike, for your reply. Did u go for a chest X-ray for shortness of breath? Am glad your biopsy went smoothly.

    • #26241
      Mike Clifford
      Participant

      Auriela,

      I had a complete work up in the spring of 2019 for shortness of breath on exertion. The work up was mainly cardiac in nature as my family history has a number of cardiac issues.  Cardiac was fine but you already know the rest of the story. I’m 68 and in good physical condition. The only pill I take is Ofev. I can still walk a couple of miles on mostly level terrain but throw in a hill and I’ll have trouble. If I go up and down the stairs two to three times my O2 sat drops to the mid seventies but it’ll go right back into the mid nineties if I take it easy for five minutes or less. I’m dealing reasonably well with the IPF and Ofev side affects. As I said before hope you get better news and if not then I hope you do even better than I did and am.

      Mike

    • #26242
      Aurelia
      Participant

      Mike thanks a mill for all the info..I hope my journey goes as smoothly.

    • #26245
      Susan Howitt
      Participant

      Reading this I was lucky, MRI scan showed up my Fibrosis, Emphysema and Bronchiectasis, ground glass opacities and TWILS so no invasive investigations, I was immediately offered Esbriet or Orfev which I refused, didn’t fancy the side effects and also as I had SSs as well as the other three lung problems I personally felt that no tablet was going to help with all 4 diseases. Recently been offered CellCept, which I again refused, same side effects plus almost completely wipes out your immunity and with Covid 19 galloping about in Europe there was no way I was going to take it.

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