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No symptoms

Posted , 6 users are following.

Scotty2121
Scotty2121

Can anyone help me please,I have recently been told I have fibrosis on my lungs after a routine X-ray,since then I have had 2 more X-rays,spirometer tests,lung function tests and a Bronchial wash.all the readings and the wash have either showed no abnormalities or as in the X-ray's slight scarring on the bottom of my lungs,I have no breathlessness,no coughing or wheezing so I am at a loss.my consultant wants me to have another C.T scan and if that doesn't tell him what type of fibrosis it is he then wants me to have a lung biopsy.Seeing as I have no symptoms whatsoever he said its in the early stages whatever it is,I am at a complete loss and don't really want a biopsy if I can avoid it,I am age 54,a smoker and a type 1 diabetic. can anyone help with my query please,any advice will be much appreciated,thanks.

0 likes, 19 replies

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  • judy72076
    judy72076 Scotty2121

    Posted

    Scotty. By all means have a HD CTScan!  I am in the same boat.  I feel fine.  All my docs have said no biopsy until I have symptoms.  But the Scan is important and not invasive.  Biopsy is too invasive at this point.  Stop smoking for sure.  Please keep us posted.  Good luck.  
    • Scotty2121
      Scotty2121 judy72076

      Posted

      Hi Judy,is a high definition ct scan different from a normal ct scan as I have already had a normal one?
    • judy72076
      judy72076 Scotty2121

      Posted

      Yes much better but you better weigh the risks.  There is quite abit of radiation in scans.  Check with a good doctor.  Too bad it wasn't HD to begin with...
  • judy72076
    judy72076 Scotty2121

    Posted

    P.S.  Any family history of lung issues?
    • Scotty2121
      Scotty2121 judy72076

      Posted

      Hi Judy,my sister died in2012 from honey combing of the lungs,it started after she was prescribed methotrexate for her rheumatoid arthritis,she was in absolute agony and her doctor prescribed morphine medicine which she accidentally overdosed on.she ended up in hospital intensive care but the damage to her lungs had gone too far and she died within three weeks of being admitted.i have been checked for rheumatoid but everything is fine.
    • judy72076
      judy72076 Scotty2121

      Posted

      Rheumatoid arthritis can be connects to NSIP a disease which falls under the category of pulmonary fibrosis.  My sister also died in November 2014 from IPF.  She had other issues, alcoholism and possible micro aspiration etc.  and general a poor health related to alcohol.  She did stop finally before death.  She was one special girl and I miss her terribly.  I was checked just because of the disease in the family and it was found.  I had a prev X-ray in 2012 which was clear.  October 2014 showed some fibrosis.  No symptoms. Stay positive and keep healthy. Walk walk walk
    • judy72076
      judy72076 Scotty2121

      Posted

      P.s.  I have not had a biopsy but they feel mine is NSIP not IPF. No honey combing which is good.
  • neville93106
    neville93106 Scotty2121

    Posted

    Have the scan.  Scans are completely trivial but give very powerful information.    In addition, if in the end you are diagnosed with pulmonary fibrosis, get access to Pirfinidone, a drug that has been available for a couple of years. It has a powerful effect to stop the development of the disease.  I have been on it for about 18 months and it definitely slows down the development of the disease. It is expensive, so your doctor may have to bully the NHS to let you have it.  Few and negligible side effects.

    good luck.

    neville

    • Scotty2121
      Scotty2121 neville93106

      Posted

      Thanks Neville,I will defo have the scan but I'm just unsure about the biopsy as I have no symptoms,and I don't want to have something as invasive as a biopsy in case it disturbs anything and it starts something off.
    • judy72076
      judy72076 Scotty2121

      Posted

      I agree.  I have Canada's best Dr Charlene Fell and she says no biopsy till I have symptoms!  May never happen.
    • Scotty2121
      Scotty2121 judy72076

      Posted

      Thanks Judy for all the help and information,depending on the results of my HD ct scan I don't think I will bother with the biopsy,why should I put myself through that when I have no symptoms.
    • judy72076
      judy72076 Scotty2121

      Posted

      Exactly.  Do you have any crackles heard by your doctor.  Do you have any feeling of a " cold" coming on but doesn't develop?  I don't have and crackles but sometime I feel like inflammation somewhere near my lungs.  But I do have some longtime sinus issues.  It's prob all I my head!  I feel well
    • Scotty2121
      Scotty2121 judy72076

      Posted

      Yes Judy the consultant could hear crackles when I saw him 2 weeks ago,I do on the odd occasion have bouts of a runny nose for a day but no longer and I feel well also.i have had sinus problems in the past but nothing I have worried about.we sound like we have the same problem Judy,do you take any medication?
  • john15065
    john15065 Scotty2121

    Posted

    Hi Scotty. I was in a similar situation - no amount of X-Rays helped until one finally showed "something". After a CT scan I had a biopsy and that enabled a diagnosis to be made. In my case I have Idiopathic Pulmonary Fibroses (i.e. they don't know the casue).

    The biopsy was invasive but nowhere near as bad as as you might think and it proved conclusively what the problem was. Ths sooner it can be diagnosed the sooner treatment can start which is vitally important.

    Keep your chin up and Stop smoking!

    • Scotty2121
      Scotty2121 john15065

      Posted

      Thanks john,did you have a high definition ct scan?and what meds are you on now?
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