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I first showed sypmtoms of PF at the age of 51. The med...

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I first showed sypmtoms of PF at the age of 51. The medical profession were extremely slow to even attempt to diagnose the condition, and I have received very little help, and it got to the stage where my consultant told me that there was no point in me seeing him again as he couldn't help me. I felt that I was being sent away to die. I am told that a lung transplant would not have been offered as they would be unable to prove what had caused it, and they therefore did not know if it would reappear in transplanted lungs. My own opinion is that it was caused by inhaling diesel fumes while I was working as a bus driver, and then aircraft fumes at a major international airport, spending the majority of my working hours in close proximity to the runways. Purely by chance, I was in a particularly good pharmacy which covered conventional and alternative treatments, and it was suggested to me that I should take N Acetyl L-Cysteine. It loosens the mucus on my chest and enables me to cough it up and therefore clear my lungs to a much greater extent than I would be able to under normal circumstances. If I am honest, I will say that I am 80% sure that it is this which is keeping me alive. I am now 60, so I have had the condition for 9 years - way beyond quoted life expectancy. The other treatment which I believe is of use to me is Cod Liver Oil. It is high in Vitamin A which is, I am told, good for the lungs. On a recent visit to my doctor, she told me that my lungs sounded surprisingly clear. None of this has halted the condition, but I believe it has been considerably slowed. Had I been able to take these supplements at the beginning, I feel that the prognosis could have been even better in the terms of my life expectancy.

[i:aa3159ac3d]This message was automatically imported from the original Patient Experience[/i:aa3159ac3d]

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3 Replies

  • Guest
    Guest

    Posted

    i wish I had read this website when my mother was ill. Like you her G.P. and with the exception of one consultant did not appear to have any knowledge of this desease.

    [i:5c78255844]This message was automatically imported from the original Patient Experience[/i:5c78255844]

  • Guest
    Guest

    Posted

    Having recently been diagnosed with PF can I just say a very sincere thank you for sharing your experience. You have given hope where there doesn't seem to be any. I hope you are still keepimg well and send my very best wishes for the future. Liz

    [i:406d4e0004]This message was automatically imported from the original Patient Experience[/i:406d4e0004]

  • Guest
    Guest

    Posted

    I also wish i had read this as my father passed away recently. He had his disese for a great number of years, this was helped as he played in a band, constantly singing, which i was told actually exercised the lungs, when he stopped with the signing, which was over a year ago, things only started back up about 1.5 weeks ago, which is when he was taking into hospital, contantly monitored, until the end.

    Chris.

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