I've had a change in my diagnosis ?

I've had a change in my diagnosis ?

Hi all, After living with a diagnosis of Pulmonary Fibrosis caused by

Rheumatoid Arthritis I have recently discovered that they are no longer sure. The cause of my fibrosis is now classed as unknown which is IPF, Idiopathic Pulmonary Fibrosis. At the end of the day this means very little to me as I am doing all right at the moment with the pills they give me and my tough exercise routines.

My 6 minute walk distances are increasing, my sats are rising and I'm feeling so much better. Ok I'm on the lung transplant list which kind of tells you all is not perfect but I am getting better.

Tony :)

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19 Replies

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  • What an inspiration you are, Tony. Fantastic news that you are improving! Don't know how much difference the diagnosis will make but your hard work has! :-) :-) Alison

  • Thanks Alison, my diagnosis has changed a few times during the 3 years I've been ill but what hasn't changed is my determination to get as well as my knackered lungs will allow.

    Tony :) x

  • Hi Tony, Does this mean we are not twins now you don't have RA if that is the case it's brilliant news, so back to breaking records up and at them tomorrow. MC

  • Its is good news MC that I maybe don't have RA but that kind of leaves the question what the hek' do I have?.

    Something wrecked my lungs in a couple of weeks and it ain't gone away 3 years after. I think their just throwing pills at me and hoping, I am surprising a few people with my improvements so that's why they keep saying, keep doing what your doing and hoping for the best.

    Tony

  • Hi Tony Just keep asking questions if they think you don't have RA what do they think you have you deserve answers now. MC

  • The thing is MC they just don't know, IPF is a disease which they know very little about, its a pulmonary fibrosis with no know cause or cure. Hopefully a lung transplant will be the answer but if that dosn't happen then I'll just have to keep going until they find out how to grow new lungs.

    I'll probably be about 150 by then :)

    Tony

  • So good to know that your efforts have had such a positive effect. What exercises do you do? I'd like to do them too so I can look as good as you. I really hope your improvement continues. :-)

  • Hey Mapal you really do need to get those eye's tested, then you would avoid my exercises just in case you really did end up looking like me. Ha Ha. My exercises consist of mainly walking up hills and using those coloured stretchy elastic band things. The exercise bike comes back in the house when the winter arrives and I try to break it before it breaks me. I also try a bit of singing when I'm alone in the house which really helps with breathing control.

    Tony. x Ok find a hill mapal and walk up it, simple's eh' :)

  • Keep jogging along singing a song and you'll come out fine Tony

    KOTC

    Your daily tonic

  • You can join me King and we'll keep jogging along, singing a song, side by side. :) :)

  • What a brill upbeat post Tony - really pleased for you. Keep up the good work.

    love cx

  • I always try to be upbeat CD and I will keep working for a better life in the future. Well what else can you do. :)

    Tony

  • You are inspirational! I had my 6 minute walk test again last week. I upped my distance from 302m to 403m. SATS were 99 at beginning and 95 at end. Was quite pleased. It's amazing what regular exercise can do to help folks like us.

    Marie

  • Well done Marie, 403 metres is no mean feat and a massive improvement on your last distance. Keep that up and you'll soon be leaving me behind as my record is 480 metres but my sats did drop to 74.

    There's no doubt that exercise is the key to a better quality of life so keep it up.

    Tony xx

  • I did have your distance in mind but I have very short legs. It's a 2.5mph pace - I can go faster in the gym but its always a bit harder in real life! I'll start working towards 480 ;-)

    Marie x

  • I'm so pleased for you Tony! those hills are doing you the world of good! great photo's by the way :) huff xxxx

  • Uphill, upbeat, upwards and onwards regardless of the diagnosis! x

  • Wow you are an inspiration! Your post only came up now,so I don't know where you were hiding!!

    Never mind names,how you feel,is your best guide,I hate labels.

    Keep on marching young Tony!!

    Love Wendells xxx

  • Hi wendells, Its a long way for my post to travel over to you, maybe it took a wrong turn somewhere. I think for now I will tell people I have IPF until the next label come's along, whatever it is I seem to be holding it off at the moment. My lung function tests confirm that the condition has been stable for the last 2 years now and any improvement in my breathing is coming from working on my body conditioning, so I'll keep the exercise regime going until transplant day arrives and then start my 2nd big comeback.

    Having spent the last two new years in hospital, my money's on a new set of lungs for the end of 2013.

    Young Tony!! :) xxxx I hope things are good for you and Harry and continue to be so.

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