Forum Replies Created
June 28, 2019 at 8:11 pm #20101
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
It’s easy for some that might be really struggling with breathless
and part two is slightly more advanced
March 15, 2019 at 9:40 am #17731
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.
April 27, 2018 at 1:32 pm #12129
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
April 27, 2018 at 10:51 am #12100
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.
April 24, 2018 at 11:05 am #12021
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.