Pulmonary fibrosis .. How did they find out ?

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Hi 

i am new to this but I find the  discussion was very helpful.

I have scaring in the lungs and my Pulmonologist is saying I have IPF or Hyper sensitive pneumonitis .

they want me to do vats biopsy to find out what exactly is that.

could someone tell me  how it was diagonised .

I had several ct scans including high density one . They say they can not pin point it from the scan.

biopsy seem to be invasive and I like to avoid it if possible .

but the doctors won't start the treatment without knowing what exactly it is since the course of treatment is different for them.

 could some one please let me know how they find out IPF.

thank you,

chitra

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10 Replies

  • Posted

    Hello Chita,

    diagnosis depends on a collection of information.  There are symptoms such as shortness of breath and coughing.  Then there is the quality of the sound that the doctor hears when he listens to your breathing with a stethoscope.  There is a typically a characteristic sound like pulling Velcro apart. Then there is what appears in X-rays and MRI scans.   Then there is the result of biopsy.

    i am in my third years since diagnosis, at the age of 81 now, and fairly stable under the medication called "Esbriet", which is Perfenidone .   

    Good Luck.

    neville

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    • Posted

      Thank you for the info.

      i pretty much have all of the above you described .

      did you do vats biopsy?

      I am doing fine now but my doctors are telling me that won't last long.

      i am still puzzled about the whole thing

      tgank you,

      chitra

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  • Posted

    Hi chitra59820

    I was first diagnosed at my GP surgery then referred to Ipswich Hospital where I had a CT scan. It was diagnosed from that - that I had an IPF. To cut a long story short I was referred to Papworth Hospital as a new drug was licenced by NICE called 'Pirfenidone' but it can only be prescribed by a specialist centre as it costs £500 per week and it is delivered to my home and have to sign for it. (two months worth at a time)

    It does me good and the amount of air I can get into my lungs has increased from 56% to 63% yet I know I won't live to a ripe old age and I have to keep away from second-hand cigarette smoke; greatly reduce on alcohol and have regular blood tests. I do cough a lot though but this is a side effect of the condition, something I have to live with BUT I am am alive and I go about my daily business without restriction although I do find that sucking a  'Fisherman's Friend' every now and then helps relieve the cough - it works for me so it might help you too!

    Kind regards

    Jazztrain

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    • Posted

      Hi jazz train,

      thank you so much for the info.

      At what age they find out and when did you start the medication

      i also have cough and sounds like wet but nothing comes out.

      thank you for the info

      chitra

       

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  • Posted

    Chita,

    no I did not need the biopsy.  The sound and the MRI were sufficient for diagnosis.  Note that the name, "idiopathic pulmonary fibrosis " means, "we don't know why you have this condition. It is just you".

    good luck.

    neville

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  • Posted

    Hi Chitra59820

    I started the Pirfenidone when I was 70 and have not looked back since. Of course I have a cough but have to put up with that, it is a side effect of the condition and I spit the excess mucous down the toilet. I am monitored at Papworth every three months; should I lose more than 10% of breath in any 12 month period I would have to come off this medication - it is not something you can feign as they have machines that tell them how much breath I can retain. 

    Some day this will happen and I will have to rely on oxygen alone; I take regular holidays in Scotland where pollution is quite low.

    Kind regards

    Jazztrain

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  • Posted

    Hi Chitra

    I am sorry about what you are going through.

    I cannot offer any answers.

    I was hoping to get some answers.

    My X-Ray showed interstitial fibrosis.i had a scan yesterday.

    Is it possible to see fibtosis on an X-Ray.

    Thank you

    Vivian

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    • Posted

      Hi vivian89329

      how r u feeling. 

      X-ray may not show very clearly.

      ct scan with dye injected is what they did for me.

      I feel this lung disease is something that doctors are having difficulty to pin point it.

       It's been 2 years and I feel ok.

      My oxygen level is good but I still have caugh.

      let me know how your scan went.

      hope u feel better

      chtra

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  • Posted

    Hi Sorry to hear you have this disease.  I was diagnosed with Non-specific Interstitial Pulmonary Pneumonia (Fibrotic) 8 years ago.  I started out getting breathless and was really scared, didn't know what was going on.  My GP referred to me to the respiratory consultant and the L&D, but the appointment was months away, so I paid privately for the initial consultation and then moved on to the NHS.  After the first appointment, things moved very quickly and before my original appointment with the NHS I had been diagnosed, following a full lung biopsy and then referred to the Royal Brompton where I have been ever since with local support from the consultant at the L&D.  I also have an underlying autoimmune disease and sleep apnea.  So along with the respiratory consultant appointments every 3 months, I also have annual appointments with the sleep study at the Royal Brompton and have a rheumatologist both local and the L&D and at the Royal Free.

    I have been on Prednisolone and for the last few years methotrexate (need 6 weekly blood tests) from day one and have had every treatment going from Chemo to now an infusion every six weeks over two days of IVIG.  I still work full time, go out and enjoy life.  I do have to use oxygen when I am active so when I go for walks or shopping.  I just make sure that I don't overdo it and if I do then i just need a day of to get my energy back.  I keep a check on my oxygen levels with a finger pulse oximeter (can get from Argos).

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