pulmonary fibrosis

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My dad has just been told he has pulmonary fibrosis & I'm terrified, I stupidly googled the condition  & it was a case of get your shovel & start digging now. I try to be strong & positive but it seem's to be all doom & gloom because it's so poorly misunderstood. The though of watching him suffer hurts my heart so much because I don't want to lose my dad, does anyone know if you can live the rest of your life with this if your general health is ok?

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  • Posted

    JMJ

    I am very sorry to hear about your father. 

    I have never heard of this until my husband was diagnosed with it.

    He never smoked never drank was very hard working and an athlete. 

    We went to so many doctors, so many tests. Same thing no cure. Could get lung transplant but we were told most patients die before that has a chance to happen. 

    All I can say is that we all have a journey that we must travel. My husband said he will enjoy the time he has left and live life to the fullest and that he did. I lost my husband nine months after he was diagnosed. May 2014. 

    We married young had three wonderfull children, and six grandchildren. 

    I will keep you and your family in my daily prayers. Again I am so very sorry!

     

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    • Posted

      Thank you. I'm very sorry you lost your husband, nobody should have to go before they have to, it's so sad. I'm still trying to understand what this disease is myself.

      I just take each day as it comes & look for positive stories for some hope atleast, it's all I can do I suppose. Life is a funny old thing. X

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  • Posted

    Have a look through my answers to other messages.  Pirfenidone, also called Esbriet, has helped me enormously, together with a portable oxygen concentrator made by Phillips.   Sure, I am going to die in a years or two, but after all, I am in my eighties and I am anyway coming to the end of a very good life.

    be of good cheer and insist on the NHS giving you the drugs and the kit.  Go to specialists, not just GPs.  Recruit your GP to be on your side.

    neville

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  • Posted

    Theres seems to be no constant way this disease works  i was diagnosed nearly 5 years ago ..and coped ok for the first 3 ,  the 4th year started making me realise the problem i had ,  and  was admitted to hospital ,where i now go every 6 weeks for a 2 week stay , every time i come out it seems to progress just a bit more ....and this last year rapid deterioration now every move consists of think first  as now can only move about ten feet at the most without gasping even with oxygen .....even turning over in bed is a effort and makes me gasp , the pains that go with it  becomes unbearable ,,, and will soon be glad when its all over,so im afraid  the only comfort i would have got is if the disease took me out fast ,,,there is no life just ticking over ........so  if his health is reasonable besides the disease ,thank god and hope it dosent drag out ....its nice to keep your family and friends as long as you can ,  but people need tothink of it from their poin tof view ........ sorry to be a gloom spreader to all the people on here but we got to look at all angles  !!!!!
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  • Posted

    Hi Elle,

    I am in the same situation with my father and am trawling the internet for all the information and support i can find.  My fathers consultant has applied for a drug called pirfenidone, and I'm praying to god it all goes through and he gets it. My mum and I are trying to find a plan b somewhere.

    My thoughts are with your father x

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    • Posted

      Hi there, I'm sorry to hear about your father also, it's a nasty disease. The worst thing I done was look on line about it, it depressed me. I have read some positive stories aswell as some sad ones. I try & keep the thoughts away & just thank the Lord he's alive today.

      I'll keep you & your family in my thoughts. X

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  • Posted

    However, I have a friend who had PF in the mid 1980s, was on a life support machine for a long time and is still very active.  For a long time she was on high doses of steroids, but decided to reduce them and was determined to keep going, latterly looking after her husband.  I know she is the exception and that everyone is different, but I just had to let you know that sometimes, just sometimes, it's not all bad.
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  • Posted

    I have now been on Pirfenidone for just over a year, and although I am not getting better, I am not deteriorating rapidly.  I also take prednisolone once or twice a day.  I am using my oxygen concentrator more frequently, but not continuously.  Pirfenidone seems an important medication and seems to work.

    good luck.

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