institual lung disease

approx 5years ago i was diagnosed with ILD and also a nodule in lung. I went on to have 6monthly ct scans for 3 years with no mdication. I was then told no changes appeared and then discharged. I hen went on to need 2 stents due to narrowed artery and 80 per cent blockage and told i had heart disease and angina. I have been suffering terrible breathlessness and chest pains and apart from drugs for angina and a number of hospital admittances have received no treatment for fibrosis and repearedly told by doctor that there is no cure. I have had a lung function test which i am told is ok and my stats are 95 but I am so breathless and coughing up all the time.. I have now been referred back to lung clinic going for an x ray and giving a phlegm sample. I realise there is no cure for this but keep reading about people on medication and even oxygen who appear to be receiving some treatment. I can only wait now for my appointment but really have no expectations apart from discharge again. I can only think that my case is a lost cause. Sorry for being such a downer as i realise that there is always someone much wose than me.

12 Replies

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  • Hello winfar, you are not a lost cause and have every right to feel down. You need the right medication and treatment, exercise as well as you can, eat well and generally take care of yourself.

    I care for my husband who has sarcoidosis which is classed as ILD. He coughs up sputum with the help of nebulised drugs and is doing well some 25 years after first being diagnosed.

    I do wish you well and never give up. Xxxxx

  • thank you for your kind words. as i am 81 and having back and legs problem it is hard to exercise apart from pottering around the house and then exertion causes the breathing problem which is being treated as angina. before i was discharged from ILD clinic I was told i had idiopahic pf and consultant said didnt know why. when i asked how this would progress as receiving no treatment told i would be admitted with pneumonia and then lung specialist would get involved which sounds quite vague to me. I am also being monitored for heart failure which heart specialist says i do not have and not being treated for it. All in all i think these specialists seem to confuse us further. I hope your husband is getting better information etc. than i am, and he is dong well. I am really sorry to go on as I usually dont, particularly as i live alone and sometimes feel sorry for myself.

  • Things do sound very difficult for you and it's not right that you are just being left.

    Pete is not doing too badly thanks and is cared for by doctors and me too of course. Xxxx

  • Try ringing BLF nurses during office hours winfar on 03000 030 555. They may be able to help you. Xxxx

  • Idiopathic Pulmonary Fibrosis is treatable but not curable.You need to ask your GP to refer you to a specialist centre there are several around the country,I live in Birmingham and get treated in Papworth Cambridge.Depending on several tests there are at present two drugs Pirfenidone And Nintenanib depending on your breathing tests if and when can be prescribed,we are at risk from pulmonary hypertension which will damage right side of heart.There is a lot of info on here about IPF and also Pulmonarry Fibrosis Uk.There are also several support groups around the country,also a super support group on Facebook you can get a link from Pulmonary Fibrosis Uk website,it's a closed group.My mum also had IPF and wasn't diagnosed until she was 80 ,she died 5 years ago this month but not from the IPF ,things are much better now,you can also look up the NICE guidelines on what you can expect.Hope this is of help to you.Sooki.

  • thank you sooki, really grateful for you reply and comments. I will try the facebook web site and follow your advise and hopefully stop my negative comments. xx

  • Hi Sooki, hope its ok jumping in here but I've got an appointment with my lung consultant this month and after reading lots of posts I just would like to know what questions to ask.

    I was diagnosed with pulmonary fibrosis in October last year but was told that I have probably had it for a few years as I started with chest pains and breathlessness 3/4 years previously.

    I am 57 and have rheumatoid arthritis since 2002, after constantly complaining to my rheumatologist and gp about the problems I was having I was eventually referred to a lung specialist. Through lung function tests and ct scans I was diagnosed with rheumatoid nodules in both upper and lower lobes of lungs , numerous 2mm in upper and 6mm numerous nodules in the lower also, scaring in both lobes and fluid. Like winfar, it has not been mentioned about medication though I haven't been discharged, I do exercise and am attending pulmonary rehabilitation course. If there's anything anyone can think of that would help me with my appointment it would be appreciated.

    Linda x

  • Do you have Pulmonary Fibrosis or Idiopathic pulmonary fibrosis because they are completely different,IPF is unknown cause and you can be prescribed Pirfenidone or nintenanib ,depending on breathing tests.If it's PF with known cause the outcome is much better,I have a nodule on one lung,I have also just suffered a heart attack these illnesses are awful,I hope you have PF not IPF. Sooki is my name on here but I am actually (Linda).

  • Thank you for replying, on my hospital letters it states IPF but surely if the insitual means cause unknown that wouldn't be me ! I will ask my consultant when I go later this month. It is an awful disease and I just don't really know what the future holds. As I said I've been breathless and have chest pains (especially when I take a deep breath) which radiate up into my jaw and the roof of my mouth for a few years now, and the coughing spells just wipe me out.

    I'm the kind of person who needs as much information as possible so I know what I am up against and then I'm a fighter. Thank you I really appreciate it. Linda x

  • thank you sassy. will do. xx

  • Hello winfar and never,ever apologise for having a moan on here. Having read your post and the sound advice given by sassy59 and Sooki,pleasevtry calling the BLF as there are nurses and medical professionals that will do their very best to help you. Please,do let us know how you get on. Having any illness is just the pits and with Winter upon us it's very easy to feel miserable.

  • many thanks for replying. i joined the bfl facebook web and i intend to phone the nurses as suggested. x

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