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cryptogenic fibrosing alveolitis

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Guest
Guest

My father died of cryptogenic fibrosing alveolitis 10 years ago and it appears that the medical profession are still no nearer with answers than they were then.

Intially my dad was diagnosed with asthma, it wasnt until he went private for another opinion that he was diagnosed.

He was put on high doses of steriods which did stabilize the disease, but they came with side affects, thinning of the skin, oesteoporosis and cataracts were forming.

He was put forward for a lung transplant but his condiotion worsened suddenly. He went in hospital and two weeks later he died. He was ill for approximately 3 years.

He was 57, fit, healthy prior to this, non smoker and drinker.

It is a horrible disease and is always at the back of my mind if I could get it. What a brilliant web site this is where people in similar situations can share stories and information. Beat wishes to all of you, marie

1 like, 2 replies

2 Replies

  • gemini78
    gemini78

    Posted

    Hi, my dad died January 2004, i have posted my experience recently on the 27th July 2007. My dad was diagnosed two years after he apparently first had it. He should have been called for follow on appointments but his case was filed. He did start proceedings to sue but we lost the case because of lack of knowledge. Like your father mine too was fit and it just came on suddenly and his condition rapidly deteriated. My dad was 63 and unlike your dad my father was considered too old for a lung transplant. This has angered me because if he had had the chance maybe he would still be here today.

    You are right there is not enough information of knowledege and it all comes down to the fact that not enough money is invested into research. Alot of people think that the disease is a type of lung cancer but its not. Hopefully there will be more awareness and money contributed for research. As far as im aware it is not hereditary and apparently it is caused due to something which is enhaled, be it fumes of somesort. There was a story of a woman whilst my father was in hospital, who had the disease because of inhaling hairspray, but until there is more research how will anyone ever know. I am sorry for your loss and know exactly how it feels watching a loved one die knowing there is nothing you can do to help them.

  • marn84
    marn84 Guest

    Posted

    Hi sadly i lost my dad in 2007 from CFA too. He was lucky and put on a double blind clinical trial using a new drug. It did slow the diease down and he survived 7 years after first diagnosis. The funding was soon revoked for the trial and his health deteriorated rapidly. He was also put on a transplant list - but after a few months the decision was made that he was too old. I have unfortunately read some articles pointing towards a genetic link, but as it is still quite rare - nothing is conclusive.
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