Interstitial lung disease / results

Hi all, yesterday I went to see the specialist in this field as I had asked for a second opinion about my illness as I was not happy with the treatment I was getting at my local hospital. Unfortunately the news I received blew me out of the water. I was told that I have only weeks to months to live and I was hoping to be told there was a drugs trial or something suitable to put me on. I am shell shocked, I don't know how to tell my daughter this dreadful news. My eyes are sore with crying as is my nose. What to do


40 Replies

  • I realise it cannot be one of the easiest things to do, but it is far better to be honest and open on what you have been told. End dates are not something to cling on to it will only drag you and the family down. They are not always correct. My wife was told a number of times I was not going to survive the night!

    As for trials look it up in google and ask what trials there are for your condition and get in touch. Very often some local hospitals will be part of these trials.

    Look to your family for support not sympathy but a hug never goes amiss.

  • Hello craftyone, you are a very brave lady to share this terribly sad news with us.

    There may be other trials you could still take part in at other hospitals. Maybe your doctor could advise you.

    I feel you should also tell your daughter as you need her support. I understand you want to shield her from this sadness but I'm sure she would not want you to suffer the news on your own.

    Please don't upset yourself, let your daughter help you.

    Speak to your GP surgery as I'm sure they will have professionals who can advise you on what help is available to you & your family.

    You don't have to go through this on your own.

    My heart goes out to you. I'm sorry I can't make things better for you 💐

  • That's terrible news to get and I am really, really sorry that you have to go through this. No point in false words of comfort but I know that several people here who got certain time-spans and outlived them by years. There are some others here with ILD but they seem to be able to control it to a certain extent by medications and oxygen. It may be that you will prove the doctors wrong and live longer then they have predicted. It happens. Please get professional advice and counselling on how to go forward at this point and ring the BLF helpline also. You don't have to deal with this on your own.

  • I'm not sure what to put here this is a very, very difficult time for you and your Family. I can only reiterate what replies you have already been given and hopefully you can draw strength from these excellent people's advice. But personally for me..please discuss this with your family they can try to help and support you the best way they are able.

    My thoughts are with you and your Family, keep fighting......!!!!

    Love Lynne xx 💖

  • Hi Craftyone, I am sorry to hear your terrible news. As others have said nobody comes with an "expiry date" so please see your GP and try to put things into place to manage your health as good as possible. Maybe there are some clinical trials you could enter? I hope you will have the love and support of your family. By the way, do you know which ILD you have? Be strong and positive, best wishesxx

  • Hi Craftyone

    Of course I don't know how to comfort you if, indeed any of us can, but we can support you with kind words and encouragement.

    I came across this link which may help

    What would I do if I was in your situation?

    I would take some time to digest the information before telling my family I am sure they will be as shell shocked as you were when you found out.

    Get yourself a note book and start writing things down - write a list of questions for your GP and make sure you have a good NHS team behind you including palliative care. Write down all the things you want to do, try or experience and live everyday as your best day. Write down your wishes, hopes and dreams.

    My sincere wishes are there for you.

    Kindest wishes


  • That's awful news, especially when you'd gone expecting something better from the second opinion.

    You've been given supportive suggestions here which I can't add to, except to say do what feels right for you. Part of that will be telling your daughter, and you'll find a way to do it.

    In 2014, I was given 3 months. I hope you're able to enjoy time beyond what they think now, and suggest you get as much professional support as you can and you want to help you do this. x

  • Hi, my name is Maggie and I have been diagnosed with IPF. I have been referred to the Royal Brompton Hospital in London and I hope they can put me on trial drugs. I am now dreading that I may be told the sad news I have just read. Can anyone help me. I would like to find out more information, but I would like the truth. Thank you.

  • Hi Maggie, Oh gosh Maggie. Sorry - I've just woken up and cotton wool in my head.

    Welcome to the site. What you need to do is to click on the 'write a post' and write this again, otherwise I'm likely to be the only one to read it.

    Can you tell us a little bit more? When you were diagnosed and so on? I don't have IPF but many here do and I know they'll be happy to chat, and we're all here to support you.

    I don't think though that we can tell you the truth about your condition because we don't know and won't until you can tell us. You sound very frightened, Maggie, and I can understand that and I'm really sorry. Hang on in there!!

    Love Sue x

  • Hi Sue, have posted my condition and thank you for replying it does help. Thank you so much x

  • Hi Maggie, I know just how you are feeling, scared, worried and confused. The positive for you is that you have been referred to a very good hospital and I am sure everything that is available for you will be offered. Please remember to write down any questions you have and also write down what the doctors say to you that way it will be easier to digest after your appointment. I really do hope that you get the chance of a drugs trial or something else, we all grasp any straws no matter what in the hope of some relief. So chin up and fight this awful disease full on. Take care. Jenny x

  • Feel for you and really don't know what to say. However as others have said there are a number of people here that have managed to amaze doctors by being around for far longer than doctors thought.

    Seek advice and support from GP. Possibly workers within palliative care will be able to assist you in how to tell your family.

    My thoughts are with you.

  • Thankyou everyone for your sincere words and kindness, I am answering through a haze of tears so apologise if there are any spelling mistakes. My GP is wonderful and is coming to see me on Monday so I will ask then about any support I can get for my family and myself. Craftyone x (Jenny)

  • Jenny, that's great news that your GP is supportive of you. Tell him all your fears & hopes & I'm sure you'll get answers.

    Don't despair, thinking of you. 🌷

  • Hi Jenny

    If you do I list I would suggest using a pencil or waterproof ink!

    Yes the news has broken but we will be here for you through the good and bad times. There will always be someone here to offer support not just now but always.

    P.S. put more tissues on the shopping list XXX


  • Hi crafty one

    You been sky diving yet?

    Sorry just wondering how you are doing?

    We are all here for you.



  • Hello trouble, not been skydiving but had a go at parachute jumping but it was a bit windy in the nethers lol. Had a brilliant day out today with a friend at the NEC in Birmingham spent a few hundred on a sewing machine that I have wanted for a few months so thought sod it, treat yourself gal. I'm sure when I go they could sell it. How are you doing now. Keep smiling. Jenny x

  • Hi Jenny, I feel for you. I have been diagnosed with IPF and cannot get my head around it because I hear different stories. I do hope you get the help you need from your family and GP. Take care

  • God bless you Craftyone. I have no words to express how sad your post made me feel except to say be strong and allow your daughter to love you as only she can. xx

  • Jenny I am so sorry to hear of your awful news and don't really know what to say. I will reiterate that there are some on here who have outlived their prognosis by quite a few years and I hope you will be the same. While there is life there is hope love. Wishing you all the best. A big hug for you. Bev xx

  • Dear Craftyone, I too am so sorry that you have had such an awful diagnoses... As the others have said do an internet search there may be trials that you can go on that's your doctor doesn't know about.

    As others have said on here, 'expiry dates' are OFTEN wrong. I have been told THREE times different ages that I am not expected to get past, and so far they have all been wrong ( the last one by 17 years to date) I can remember the panics that I had a few times as I got near to this ages , but I don't worry about it any more. Doctors can only estimate these dates. not only in lung conditions, I have several friends given 'end dates' that have far exceeded the dates, some for cancer, two for Alzheimer's, obviously some of them are lung related too.. Just try to stay as healthy as you can, do everything you can to help yourself and keep going.

    Lots of love to you

    BIG HUG Sohara

  • Dear Craftyone just wanted to echo the replies of others, I to was given an expiry date of December 15, I recall the build up to that so can understand how you must feel. It seems futile to say don't worry, but do try to enjoy every day. Xx

  • Oh Jenny I'm so sad to hear your news- I can't imagine how devastating this must be for you and your family. As others have said don't take too much notice of the doctors timescales.

    Please don't be alone. There are lots of people on here to help and support you.

    Sending lots of love and hugs



  • Jenny So sad that your news was not what you wanted to hear. You will find the courage to tell your daughter and then she in turn will find the same to support you. that's what moms and daughters do they are always there for each other. I hope that the doctor is wrong and that you have a few more years left.

  • Sending you my love and hope you find the strength to tell your daughter.xxxxxx

  • Dear craftyone, what a terrible shock for you. I would respectfully suggest you tell your daughter.

    I feel she would want to know and would be hurt not to be told at the beginning.

    The dates are at best, a guess. it doesn't mean the doc is right either.

    Love and best wishes to you xxx

  • Jenny, what a shock for you - so sad to hear that terrible news - as a lot have already said, so many on here have & are still outliving the life expectation dates given to them - you are a brave lady & am sure you will carry on fighting - try to share the information with your daughter asap as she will be very upset if you delay telling her as I know she will want to support you through all this. xx

  • Thinking of you with love x

  • Hi Jenny,

    I would ask for a third opinion if I were you, even if you have to travel to the other end of the country. There is more than one specialist hospital which deals with ILD. As an orthodox Jew I believe that it is only God who knows when we will die and not these puffed up specialists who think they are mini gods. Keep on fighting Jenny and most importantly keep on hoping.

    Kind Regards


  • Thankyou for your kind thoughts I did ask for an appt. with an ILD specialist in London but I was refused that option, I like many thought you had a choice of where to seek treatment but not me it seems. Jenny x

  • Jenny

    Please get someone at the CAB to check the NHS Constitution. I have a feeling that the GP can't refuse to refer you. Good luck.

    Kind Regards


  • I can only echo all the wonderdful replies you have already had and wish you strength to carry on for as long as possible. Bless you. xxxx

  • Jenny, I am so gutted for you. How the medical professionals could spring that on you just like that is just terrible . Please Have faith, believe in yourself, not them, spend quality time with your Family and I hope you can find the words to tell your Daughter what they told you.

    Thinking positive thoughts and prayers for strength for you , I hope you get a third opinion and I hope for you there will be many more happy years to come, love huff xxx

  • hi so sorry to hear your news, you must be in pieces with the shock of it. I was gutted when I read your post and have been thinking of you since. hope you find a way to tell your daughter about this as soon as possible. thinking of you, love martine. xxx

  • Thankyou Martine my GP is going to see my daughter today to tell her the full sp as I just cannot bring myself to do it. I feel really bad having the news broke to her this way but I can't cope with it. Jenny xx

  • hi sorry jenny I have just found this response. I usually get a email to tell me I have a message. I hope the meeting went as well as to be expected. I am glad you daughter knows now, if you ever want to privately chat PM me, thinking of you and your daughter, lots of love martine. xxx

  • so sorry you didn't get the news you wanted, but please try to stay strong. We are all here for you, and will always support you. You will find a way to tell your daughter and family, and they will be very shocked but supportive. Please keep fighting, a lot of people live alot longer than the doctors say. You take care ask about support for you and the family. Remember someone here is always ready to listen and give support. Thinking of you. God bless you. And please try to fight and stay strong😊 xxx

  • Hi Damon1864

    I am still in the goldfish bowl time where I know things are happening around me but nothing is sinking in. My wonderful GP broke the news to my daughter on my behalf and I have said I want normality back not wrapping in cotton wool. I intend to fight all the way even though I am finding it difficult as I am very tearful all of the time and my wonderful husband keeps breaking down, in 38 years of marriage, before this I have only ever seen him cry once. What a s..t hand life has dealt me !!!!

    Jenny x

  • Dear Craftyone, did the doctor do any tests? I dont think a normal doctor ll give the prognosis, because nobody knows when we die.

  • no tests were done he went by previous scans, x rays, bloods etc x

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