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Firosing Alveolitis

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Guest
Guest

I am 67; diagnosed about four years ago. Feeling very very frustrated as I am so short of breath I have no energy for anything except reading and sewing and am sitting here getting fatter and fatter! Don't seem to even have the (arguable) advantage of the weight loss. My consultant is advising oxygen treatment and I am keeping my fingers crossed!p

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    It sounds like you were diagnosed at about the same age as myself. I am now 63 and was diagnosed earlier this year. I too have become quite fat having put on about 12 kilos. Were you too on predisolone? This medication helped me to breathe but unfortunately gave me every side effect one can have, cushings syndrome the worst. This is what made me get so big. I cannot also get into a diet to help me lose it. I think I am comfort eating. I have not got a lot of energy, but have a husband who does not keep too well and a dog to look after. I have to push myself. It gives me encouragement to hear you have not yet gone onto oxygen after 4 years, but I guess if it will help you to breath easier it would be beneficial for you.I have joined a support group which meets once a month, they also give encouragement to me and is an outing I enjoy.Do hope to hear from you.Lee
  • KK
    KK

    Posted

    No I dsidn't have steroids. I didn't want the side effects. Earlier this year I was getting worse and desperate. So I agreed to consider steroids. The consultant organised a scan and I was then told it almost certainly would not help.

    I have now got my oxyen (it was delivered a week ago). I was very excited and cheered up no end. BUT although I think it has helped my brain function (!) I am not sure about the energy level. I am trying different amounts of time on the machine.

  • Guest
    Guest

    Posted

    Been wondering how you are going on the oxygen and if you have been able to regulate it to suit you? I am doing OK, just trying to avoid our winter chills which seem to be everywhere here in Australia. Good luck Regards Lee
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