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  3. Pulmonary Fibrosis

i have i.p.f.

Posted , 2 users are following.

Guest
Guest

hello there, my name is dee and i have i.p.f...i hate this condition,i have had it for over a year now and i am 58 now...i always thought i was healthy and loved my job as a nursing auxillary..i miss my work so much,and the way mylife has changed so dramatically..everything i loved has been taken from me working,going out walking eating out just the whole joy of life...sorry but i feel so ill all the time i am just angry and want to know why me? i have dropped 2 dress sizes and am coughing allday..evenings the worst i seem to often spike a temp..i have clubbing,and have lost all my confidence

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Dear Dee, so sorry to hear of your illness. I gather from the info I have now read about this condition that it means \"from an unknown source\"I have to say I am fortunate that mine was caused through a drug I took for many years and now since withdrawing the drug and a horrible six months of steroids my lungs seem to have stopped fibrosing and I am left only with moderate damage. I just wanted to write back and let you know I am supporting you all the way. I suffered cronic panic attacks and sat up night after night feeling so ill and getting all my business in order. I have a supportive husband and family so once again I am blessed by that. I hope you too have family and friends around you. Noone , unless they have suffered breathing problems understands the fear of not being able to get your breath properly. My coughing stopped soon after starting the steroid. Mind you I had terrible side effects from cortisone but it saved my life. You have lost weight but I gained 15 kilos. I am in Australia where are you . This is a great website and I am grateful for all the info I have read. Please keep us posted as to your progress and remember I am thinking of you as so many others will too when they read your message. Have you actually tried steroids? Regards Lee
  • rainbowflyinhigh
    rainbowflyinhigh

    Posted

    Hello Dee,

    I really can't say anything that will help you, i just want you to know that my thoughts too are with you as Lee's are. And if you want to talk, i will be here to listen.

    Do you have family around to help you?

    I'm thinking of you.

    From Joanne

  • Guest
    Guest

    Posted

    Hi Dee,Iwas told I had C.F.A. 3 and a half yrs.ago, and until I read this page on the disease thought I would get better.Not one doctor at the hospital has yet told me it is not curable.I am on oxygen therapy at night,this helps, I also take steroids.You sound like I feel,but at 57 I have 2 grandchildren that I'm determind to see grow up.My family don't know how bad my illness is,I don't want them worrying about me.Dee I know how deppressing it is all I can say is keep your chin up we can beat this thing together.Lets try willpower that has helped me many a time.

    thinking of you

    Blema:cuddle:

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