Greetings fellow IPF people ! I was diagnosed in 2007. Have never smoked a cigarette in my life, always worked in good clean environments ,

Greetings fellow IPF people ! I was diagnosed in 2007. Have never smoked a cigarette in my life, always worked in good clean environments ,

And never had neumonia or infected by mould. - nor kept birds. - all the usual things asked by Doctors . So why - I ask myself ?? Now aged 71 and past the usual limit I am more at ease with the situation . Having been given excellent advice and tuition from the staff of St .Francis Hospice ( day unit ) Havering , I've learnt to PACE MYSELF and TAKE MY TIME and just learnt to accept it. I am currently enjoying a holiday in Singapore where my brother and sister are resident , having paid the £900+ air fare , and upon mentioning I was carrying a small portable oxygen cylinder I had to pick myself off the ground when they asked for 50% of the fare so I could put the cylinder on a seat ! Thank goodness for a very caring and efficient Consultant who adviced me about a portable concentrator (INOGENONE ) which could be taken on a plane with no problem ! Battery operated I am using it whiile away and all is well . The moral of the story is. - while it's damned awful to live with, short of having a transplant and all the risks that it envolves. - learn to live with it and JUST TAKE YOUR TIME ! Good luck all.

22 Replies

  • What a great post Bob,

    Thank you for sharing your experiences here.

    Both look great in the photo, also your surroundings and the little dog :O)

    Have a great holiday and keep on puffing :)

    Best wishes BC

  • Thanks for your reply BC only posted to show other IPF sufferers that life goes on.

    Cheers. BOB

  • How good to see such an upbeat post. Enjoy your holiday and the good weather you are obviously having. :-)

  • Thanks Mapal. Keep well. - Take your time is the answer !

    Cheers. BOB

  • Interested in your post, Bob. A cheerful positive read. x

  • Thanks for your interest pergola1, I guess we all have to live with this the best we can. - keep well. Bob .

  • Keep on going bob. st Francis hospice (in havering), are wonderful. Have had dealings with them myself, but not for these reasons.

  • Thanks for that 6161 - couldn't agree with you more. - really devoted team. Keep well . BOB

  • What a very positive post Bob and hope you have an amazing holiday. My hubby, whom I care for, has sarcoidosis (nearly 23 years) and copd (nearly 4 years) and he copes very well at the moment. You take care and thank goodness for the portable oxygen. xxxxx

  • Thanks for your response Sassy59. - hope you and your hubby keep well and happy. Bob .

  • Hi I have just been told I now have sarcoidosis after being told the last 3 years that I had ipf. What do I have to look forward to and what medication is your husband taking. As they have started me on steroids possible for the next 12/18 months. This is helping me with my breathing. I also have problems with my blood as well.

  • Pete has had this disease for nearly 23 years but everyone is different. He takes 10mg pred every day and cannot be without them now. I am sure your medical team will keep a close eye on you and do get checked for osteoporosis because of the steroids. Sarcoidosis affects everyone differently and I hope that you will be fine in time. Good luck and let us know how things go. xxxxx

  • Thanks I feel better taking the pred its like waking up after i started taking them,

  • Chimes with me asking what sins against my lungs was I prepared to admit none at all bakes their noodle it shouldn't because we are all different. I am taking my own sweet time with COPD I have learned how precious life is after the fright of expecting a shortened future.


  • Thanks for that ! All is good here in Singapore but my portable oxygen is always at my side. Keep well. - Bob

  • A lovely post bob,I have ipf myself and staring on ambulatory oxygen,hoping to go to San Francisco soon to see my son and grand kids

    Jambo :)

  • Good for you. - Go and enjoy you're visit. - family is every important especially now ! Cheers. - Bob.

  • Hi Puffingbob. My Husband has IPF and has had it for four years. In the four years we have been abroad and had some lovely holidays. We have been stopped in the last few months. My Husbands condition has now deteriorated. Our Consultant wouldn't consent to him flying any more. He has not been given a very good prognosis. You enjoy your holiday and do as much as you can there is nothing better. Take care. X

  • How sad is that. - what a pity . I confess I was a little worried when the airline said I needed a FIT TO FLY CERTIFICATE , it was then really up to my Consultant to make the decision. I hope things get brighter for you and your hubby . Best wishes. - Bob.

  • Thanks Bob. You've got to do everything you want to do now. Remember! Tomorrow never comes. X

  • You're an inspiration to the rest of us, enjoy your holiday!

  • Hi Bob, I like you have IPF and have never smoked or worked in bad atmospheres. It is the luck of the draw isn't it? You saying that you were diagnosed in 2002 has made me hope for a bit more time as the 3 to 5 years is depressing isn't it? I am 80 so shouldn't moan but couldn't do what you are doing, so just make the most of time and do as much as you can while you can. Summer is coming and someone has just told me it is going to be a good one so what is there to moan about!!!! Good luck to you, keep smiling. Regards Popplewell

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