Forum Replies Created

  • pamela-martin

    Member
    June 28, 2019 at 8:11 pm in reply to: Exercising When You Have a Chronic Disease

    Here in  Dublin Ireland ?? ILFA that’s the Irish Lung Fibrosis Association .. I was very happy to be involved with the making of a DVD especially adapted for lung fibrosis is has been very popular with our members and patients all over Ireland,

    I have had  IPF for nearly 10 years and exercising is major role on keeping me as healthy as possible I’m putting up a link I hope some of you might benefit from it and it’s FREE

    https://youtu.be/2UMpPrvLJu4

    It’s easy for some that might be really struggling with breathless

    and part two is slightly more advanced

    Pam

  • pamela-martin

    Member
    March 15, 2019 at 9:40 am in reply to: Flying with IPF

    I don’t want to scare anyone, but I have had some pretty scared experiences flying, although I had been told no long haul and try and keep flight time 3 hours max, I done this, my first scare was about one hour into flight, my fingers went black and my arm went freezing cold, the stuardess noticed this, I told her I was going to turn my o2 up to full, I kept rubbing my arm and concentrate on breathing I made that one,

    the 2nd time just after landing I had a extremely bad nose bleed, bad enough, but this is The 3rd time, I felt like I was sitting on a tennis ball ? on the back of my thigh, and was the size of a tennis ball, a clot had formed, straight away I went to seek medical help, but before I got there the lump had burst, my leg looked like I had been I road traffic accident, I really just wanted to make people aware of what could happen, I might be just unfortunate but I never had any problems before IPF, I am now awaiting transplant list but I do not intend to fly until I get sorted, If I get sorted with transplant.

  • pamela-martin

    Member
    April 27, 2018 at 1:32 pm in reply to: The IPF Patient's Experience with Prednisone

    I really do encourage anyone with IPF to keep up a fitness regime, I had gone to pulmonary rehab classes for a number of years,  and always try to walk, even if it’s indoors in a mall/shopping Centre, I am very involved with ILFA (irish lung Fibrosis Association) on the ilfa website there is a pulmonary exercise class designed for IPF, we have just made a dvd on yoga for the same purpose, which will be able to download soon, I think it’s my positive attitude and determination to stay well

  • pamela-martin

    Member
    April 27, 2018 at 10:51 am in reply to: The IPF Patient's Experience with Prednisone

    Hi Charlene,

    I can say when I am not on the Prednisone the tremors stop, if I am a high dose when I get an infection or breathing problems the higher the dose sets of the tremors, I have asked for a supply for these instances saving a trip to GP or hospital, I find I can manage quite well and I only use them in these instances … previously I had been on 10mg for several years …. but now I find taking a hard dose as in 6 a day 5 a day etc works very well for me killing off infections or making me feel less week ….

     

    Cliff… Prednisone is widely used here in Ireland, I think I had tried everything when I was first diagnosed and my lung capacity was 39% then came espirit or prifidone I was one of the first patients to go on this drug and was on it quite successfully for over 6 years, though my liver has taken the brunt, so I am off all anti fibrotic meds now… I can honestly say my general well being is better, not experiencing side affects, but on the negative side the dreaded cough is worse, and night time breathing is sometimes a problem I keep myself fit and my lung capacity is 51%… which is brilliant nine and half years I’m doing ok thankfully.

  • pamela-martin

    Member
    April 24, 2018 at 11:05 am in reply to: The IPF Patient's Experience with Prednisone

    I have IPF for nine and half years, Prednisone, I am on and off it, I had been on it permanently for a number of years and gained over 3 stone,

    side effects, Weight gain, some time tremors though only slight, not sleeping well,  I had asked to be taken off them I was taking 2 a day to help me reduce weight, I lost the weight straight away and only take them when needed.

    now pro’s when I get an exerbation or a chest infection I know immediately to take them again, starting with six a day then five four ..etc. until day 6. And almost straight away I am well again, I have been doing this for the past 3 years.. and best way to manage symptoms.