Re. BLF article on IPF

A very good article but once again there seems to be the voice of doom about it, life expectancy and so on . I was diagnosed 6 years ago and told if I was lucky I had 2 years unless I could have a transplant. After losing some 3 stone to make a transplant more viable I was put on the list. I was on it for nearly 3 years without a call. I was then told that I was no longer a viable risk.

I am now in what my consultant helpfully calls the later stages of the condition and advices me to put my affairs in order. I have arranged with my community matron the level of care and intervention I will accept at the end. It all seems doom laden to me.

The thing is although I now need 4 lpm oxygen 24/7 I am still able to get around, albeit slowly in short hops and on a mobility scooter. This is with weather permitting of course. My wife. who has been quite incredible through the whole time, says that it's the power of positive thought as we both think that if you dwell on your condition it will only get worse but if you push yourself close to your limit it helps. I know getting close to your limit can be very uncomfortable and quite scary but it doesn't hurt you, you may feel a bit ropey for a few hours but the pleasure of doing something that you thought you weren't able to do far outweighs this.

What I'm trying to say is although IPF is a death sentence it shouldn't rule the way you live. Off course there are limitations put upon you but there are usually ways to circumvent most of them. ie: mobility scooters, liquid oxygen cylinders, stair lifts are but a few. Unfortunately we have to pay for all but the oxygen some help there would make a world of difference to a lot of people.

But overall we should not give into the condition but strive to say. You may get me in end but you've got a fight on you hands.

Keep well and think positively.

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  • What a wonderful post! I was also told I would not live very long when I was diagnosed with COPD (2 months if smoking, 3 years if I stopped) but I continue to defy their predictions 6 years later. I agree that a positive attitude helps as does keeping your self as physically active as is possible. Long may we reign! xx

  • reign we willxxx

  • bloudy good for you high 5,man,xbernice

  • How fantastic!!! I am a great believer in positive thinking! (Still trying to convince my husband!) Long may you continue to enjoy your life !! God bless you and your wife TAD xx

  • Why do you have to pay,I should also ask other IPF sufferers,do none of you get DLA or PIP as it's now called,I would be interested as I have recently been diagnosed with IPF and wonder at what stage. Of illness you can apply for help.Thanks Linda

  • What an inspiration, God bless you.

    David 1968

  • My husband has just got oxygen put in to use. He has been told to expect only a year. It has worried us stiff but when I read stories like yours it gives me hopes. The Specialist is going on averages and says the average is 4.5 years. My husband has had IPF for four years so that is what he judged it on. You're right you must live for today and count your blessings.

  • I was given 12months for my COPD 17 years ago. I live for today!

    KOTC

  • Thank you all for your kind words.

    Stay well and carry on regardless.

  • You are absolutely right. Staying positive is so important and we have been very inspired by the stories on our website, like Malcolm's, for example blf.org.uk/Page/Malcolms-st...

    Our aim with this article was to emphasize the need for more to be done in terms of research and raising awareness about a disease so few know about.

    We're also very happy that the UK now has its first ever IPF patient charter, and we hope that this along with the effort of so many inspiring people, like yourself, we will be able to raise awareness, those who have IPF and their families will begin to receive the adequate care and information they deserve.

  • Long may you continue! Your post was very uplifting to me (I also have IPF) and as you said we musn't let the b....... get us down! Have you tried claiming for PIP at all? I haven't as yet but may in the future. Kind regards. :-)

  • Yes I do get a very small amount form the government, not sure what they call it now but it certainly isn't enough to live on. As with any state aid if you've managed to save a few bob you don't get much help. I am still only 63, just, so I can't claim my state pension yet. I was almost forced into early retirement when I first started using oxygen, some three years ago now. I was the southern area facilities manager for a pension fund which involved a good deal of travel and overseeing some quite large building contracts so I suppose I had no option really. Although I do miss the challenges ever day work threw up.

  • I was diagnosed in 2001, I am NOT on oxygen, the experts do not know everything! Rock-on

  • Check out perfenidone.Also the Buteyko breathing method.Both are keeping me hopeful and very positive.Good luck!

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