newby after info please

Hi firstly my hubby has been diagnosed with pulmanary fibrosis after having trouble with his breathing and then a chest xray and ct scan which showed a small amount of scaring in the bottom part of the right lung , this was all about a yr ago and the consultant wasn`t sure if it was going to become active or not , so we got on with life till about 3 months ago when he developed a chest infection which was being treated with anyibiotics , they gave up with the antibiotics in the end as they where having no effects , he was sent for a chest xray which showed up some more damage he is still coughing loads of gunk up and getting breathless but the docs are still sitting on there hands and do not want to give him treatment!! now i find this disgrasefull . has any one had the same sort of experience , or could give us some info on how to deal with this. Thanks Kim.

15 Replies

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  • Kim, I don't have PF but can understand your need for information. Can I suggest you ring the BLF helpline (03000 030 555) where you will be able to speak to someone who will be able to help and offer advcie. Good luck. x

  • *advice - my fingers can't spell!

  • Thank you Aunty Mary could i just ask is this a usa number? as i am in the uk. Thanks Greg

  • 03 numbers can be called at the same rate as 01/02 numbers, often included in call packages on home and mobile phones.

  • No. It is for the British Lung Foundation

  • 03000 030 555

    polly xx

  • Thank you everyone i will give them a call and have a chat. Thanks Greg x

  • Hi, so sorry to hear of your husbands diagnosis. I have the same but its classified as UIP. In my case time was of the essence but after waiting for over two months back in 2011 for my first meeting I was put on Prednisilone .. ( an anti inflammatory steroid ). It worked so well for me and I believe the progression of my disease has slowed down as a result. I can function again. in my opinion you and your husband have to act fast. Pulmonary Fibrosis is relentless. I would make as much fuss as you possible can untill you're satisfied. Good luck. Jan.

  • Hi Jan thank you for your support , it`s such a shame that you have to fight so hard to get the treatment that you need , it upsets me to see my hubby struggling , i am going to go to his appointments with him in the future as he is not very good at telling docs exactly what is going on. Kim x

  • My husband has sarcoidosis which causes scarring on the lungs and other problems including now copd. He was just left with pred for a number of years before being referred to the Royal Brompton in London. He is fairly stable now but the damage was done so get treatment for your husband asap as you don't want to leave it. Good luck to you and welcome to the site. xx

  • Thank you for your comment sassy59 , im so worried it`s hard watching someone you love so much suffering im in tears as we speak , i am going to start to get more involved in his treatment , he had a very nasty chest infection over christmas and the docs gave him a weeks coarse of pred , he said that he could breath so much better whilst on it , do you think that he should prob need puffer`s too??

  • I am sorry ot hear of your husbands plight as far as treatment goes. I do hope you can push things forward and get him the treatment he needs xxxxx

  • If there's scarring its a warning believe me I agree with Oxjan treatment needs to start as soon as possible I have been on steroids now for 9 years but since October 2011 it has slowly got worse ask for a second opinion if left it can start to make him rather poorly.

  • Hi everyone i would like to say thank you first of all , secondly i took on all the info you guys have said and rang the helpline , they where very friendly and helpfull and sugested that i get my hubby refered to a specialist as soon as pos , so i made the apointment today to get the ball rolling , im not going to let them fob me off with exscuses im going to make sure he gets the proper treatment , i will let you all know how we get on and stay intouch , thank you again you have all been a tremenduos help.

  • Hi everyone i would like to say thank you first of all , secondly i took on all the info you guys have said and rang the helpline , they where very friendly and helpfull and sugested that i get my hubby refered to a specialist as soon as pos , so i made the apointment today to get the ball rolling , im not going to let them fob me off with exscuses im going to make sure he gets the proper treatment , i will let you all know how we get on and stay intouch , thank you again you have all been a tremenduos help.

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