Interstitial lung disease sounds like a chest infection so I thought! 3yrs down the line its hit home I am dying at 48

Interstitial lung disease sounds like a chest infection so I thought! 3yrs down the line its hit home I am dying at 48

I need to find other sufferers of this and is it normal to become over emotional when under a great deal of stress I am now finding it hard to cope with no friends or family and a 3yr old son I adore but hardly see and the looming prospect that some other poor souls lungs will save me and put me in the same poor quality of life

28 Replies

  • Hi Reggie, my name is Tony and at 38 I have less than a year to live and have only had IPF since september last year. My disease has taken hold in a massive way and after every set of tests i am being told that it has progressed massively. I have just come out of hospital having had my transplant assessment and i am now on the active list but if i dont get the operation soon i wont be here. its perfectly normal to feel over emotional when under the stress we are under and i cant imagine having a 3yr old , i have my wife but no kids and in a way im sad about the lack of children but in another way im glad i dont have to burden my wife with the responsibility of looking after them when i am gone. I know i am going to die its just a question of when,if i get the transplant it may be that i live 5 years maybe more maybe less. My quality of life is poor now and with a transplant it will be different not necessarily better but its a chance of more time. Please feel free to message me and we can exchange phone numbers if you want to chat one-to-one. Hold on to all the positives ,I know its hard sometimes but sorry to say thats all we have.

    Chin up and speak soon


  • Thankyou for your kind words tony some days are good others bad it all depends on what other social problems occur I am seeing my consultant on the 31st of this month and will have a chat with him my name is actually brian but it would not let me use it as a user name illiterate with computers but heres my e mail address.

  • Hi Brian, i know exactly how you feel about some good days and some bad days, i had a bad start to today (monday) but managed to cheer myself up with a walk with my wife and little dog. I see my consultant on the 24th for the first time since being put on the transplant list so that should be an interesting meeting! I will drop you an email in the next couple of days. Good luck for your appointment on the 31st

    speak soon


  • I'm so sorry to hear this has happened to you Reggie. Are you being treated at Royal Brompton? I go there (for something else) and believe they have the only specialist centre in the UK treatment for ILD. I hope you'll take Tony up on that offer Reggie, because you really need someone to talk to, you can't deal with this on your own. Also you need specialist help in coping with the inevitable stress and depression.

  • No I am at the preston royal under Dr Haider he is a funny charachter who I feel is genuinly concerned I have passed on my e mail address to tony and hope to hear from him soon thankyou again for your support

  • Hi Reggie

    So sorry to hear of your diagnosis. I too have Non specific interstitial pneumonitis caused by an autoimmune disease Sjogren's syndrome - plus I have also been diagnosed recently with pulmonary hypertension. Like you I went through a whole range of emotions when i was first diagnosed. I am 68 and so sorry that Tony and you have got this disease at such a young age - it is very cruel. I must admit that I was quite angry at first because I had just retired from a job which I loved but which entailed long hours. I had promised my husband who had to retire a few years earlier that we would at last enjoy time together; take the holidays and weekends away that we had missed when I was working - spenf more time with the family etc.

    However when I got over the initial shock I decided that even if I had this illness I was going to try to make the time I had left, the best I could and I was not going to give in easily. Obviously a lung transplant is not an option at my age.

    I have undergone any treatment that seemed to offer a slow down in the progress of the disease, and am now going to the Royal Brompton for treatment for both NSIP and PH. In fact I go there next week for a\ few days to begin a treatment for the pulmonary hypertension.

    If you are not with a specialist centre like the Royal Brompton, then perhaps you can ask if you can be sent to one - they are the people that are at the forefront of research into these horrible diseases and have a lot more experience than any local hospital.

    If you haven't been on a pulmonary rehab course already, then again it would be worth you asking if you can go on one - certainly they have helped many of us.

    Also you might want to ring the BLF hotline - there are specialist nurses and counsellors who could perhaps help you talk through the issues for you.

    And finally, I met a chap on my pulmonary rehab course who had had interstitial lung disease for 16 years! He was under a specialist consultant and was waiting for a lung transplant. So sometimes the end is not quite as nigh as we might think!

    I know it is very hard, but try to be as positive as possible. For me much of my anger was based on suddenly feeling out of control. Well I know I cannot change my disease but I have decided to not accept the inevitable without a struggle.

    Take care - and keep your chin up.


  • thankyou maggie for such a long reply the other night I could hardly read it all through the tears and like wise here I am with lots more to do its 2 32am I have been up coughing since about 1am since coming on here I feel comforted that others care and want to be there to support not just others but to offer their experiance up as a guide I feel so sad that you are not to be given the option of a lung transplant, I read some paperwork a while back and also within this paperwork there was a person who had ILD for seventeen years there was also an article that said most sufferers also suffer memory loss which sounds about right for me I forget very quickly. Your a very brave lady and your words of encouragement have not fallen on deaf ears I have saved everyones e mails to reflect on, well maggie I have promised to answer everyone before exhaustion hits me you take care and keep in touch

  • Hi Reggie and Tony, my name is Mandy and I have ILD caused by rheumatoid arthritis. I know that my emotions are all over the place and I haven't reached the stage where I need a transport. Last week I seemed to cry at the slightest provocation. However, this week I am much happier. I went to a committee meeting tonight and participated in a team building exercise. We all laughed and laughed at the end of the exercise. Reggie, maybe you could talk to your 3 year old over the phone or on skype. Kids are great at making you forget your troubles. Tony, how about cuddling your wife or watching a funny programme on TV. I am a great believer in grabbing your happiness where you can. I wish you lots of strength.

  • I am not sure what mine is caused by mandy, they keep saying undiagnosed pneumonia At the moment I talk to my son on the phone daily and I am awaiting access for days out with him and coming for tea he is such a treasure we went to wales on fa hers day and its a treasured memory for me I am trying get a move to a larger property this one was only temporary only a shower here I long to lay in a hot bath little things like that help, but I am trying to keep positive in mind but that changes daily I could go back to sleep and wake up different please do stay intouch and thankyou for taking time out to lift my spirits.

  • Hi Mandy,

    You have me a bit concerned now as to whether it's ILD I have too. I am 47 and I have several medical problems, Rheumatoid Arthritis, Type 2 Diabetes, High blood pressure and high cholesterol and I have been getting severe pains in my chest and through to my back as well as numbness in my left arm and leg. I have also got Tinnitus and Labyrinthitis. I had an ECG done yesterday and they couldn't find nothing wrong with my heart, so now after what you've said, I'm wondering, could it be ILD?

  • I read these messages at 1 15 am this morning and was so overcome with emotion thankyou for your kind words of support but its now 7 25 am and exhuation is kicking in had a bad night I will answer each message individually and again thankyou very much knowing there are others to turn to who know has given me a bit more strength this morning

  • Thankyou for your kind words I am please that you have taken time to comment on my post most people I used to know did not have a clue I can only recall one or two that actually understood I am on a learning curve now and I am sure that at some stage I will meet other suffers I have dropped my e mail address to tony but so many have been so kind, well its after 3am I am toying with bed or answer more, again thankyou for your comments

  • Hi Reggie, i am so sorry to hear of your illness, i do not have the same condition but i do have a young child who cares for me most of the time so i can understand some of how you feel. You do need to talk to people and hopefully that will help you like it has me on this site. Its perfectly normal to feel the way you do and all of us that have limited time feel down and sometimes catches you out at the worst times when we would prefer to appear composed. Just remember there are people on here willing to be a shoulder for you and help you as best as we can xx

  • This tugged the heart strings thankyou for your comments, the times I have been in tescos shopping and the mind goes into over time and the tears come at first I felt an idiot now I handle it better, but your right when you want to be composed it just falls apart, each time I read these comments I cry I should have came here 3yrs ago maybe life would be different now but back then I was still in work mode and mentally struggling as to why I struggled to keep up with everyone else now I struggle to make the bed. Again thank you for your comments and do stay in touch

  • Hi Reggie, I am so sad to hear that you have such an awful disease at such a young age. And with a little one. My husband has severe COPD and is a little older we too have children although the youngest is 11. (Still hard work!!! but adorable). I wish there was a magic wand and we could put it right. The pulmonary rehab course worked amazingly for my husband and also put him in touch with other sufferers and they made their own little group up and meet once a week or so. Also he joined the local Breath Easy group and goes there once a month. I have noticed that it has helped him to be in touch with other people who have similar problems. Easy to say - but try to be positive! Take good care. TAD xx

  • Hi tad thanks for your comments my partner and I have split down to me really you always loose the best ones but we are still friends, my son was three in june but I recall all the fun times we have he is a hand full but I remember times when at such a young age he would hear me coughing and seek me out and hug me sometimes patting my back if only there was a magic wand I would cure me and my relationship with my ex and be back at the farm but sadly not, I am in the process of getting intouch with prestons breatheasy group I think it will be good for me to be mixing with others who suffer similar diseases again as with all thankyou and stay in touch I am getting a little tired now its after 3am may make a cup tea thanx tad

  • Hi Reggie

    I have IPF and was diagnosed early 2006 and probably had it for at least a year before that. It took me ages to accept what was going on because the Drs never told me how debilitating the illness can be. I carried on working for 2 years after diagnosis and finally had to retire because it didnt look good working on a hospital ward using a mobility scooter and portable O2. Until then I kept thinking they had made a mistake because I honestly didnt feel unwell. I went downhill after having pneumonia.

    I didnt know where to turn for help or who to ask. It was a stroke of luck that I found the pulmonaryfibrosis forum on yahoo and found lots of us in the same boat all willing to share and help with their knowledge and experiences.,just something simple like using a towelling dressing gown after having my shower was a great help. There are some carers on the forum too and they offer any information they have. Please look us up and please join us. We have a couple of members who are on the active transplant list and just awaiting the call. A few younger members like yourself. I'm sure we have half a dozen in their 40s or were diagnosed in their 40s. If you have a problem finding the group get in touch with me and I'll send you the web address. But if you type into google yahoo groups pulmonaryfibrosis you sould find us.There's no need to suffer alone when we are all around to help you.


  • I have to reply to you mo because your statement is me to a tee, I continued to work the farm and take our saddlery show units to horse trials, even when those around me could clearly see that something was not right we live and learn, I now struggle doing the simple things and driving up and down the country is definately a no no I have made a note of the forum and will endevour to become invovled in the next few days I have upto now had some very possitive support and want to expand my contacts and make some more friends who knows what may become of it all, well dawn is breaking and I am becoming tired so must get som sleep thankyou for your support and please stay intouch my names is brian night

  • mo i am also going to look at the site on yahoo as i have the same condition in early stages and desperate to find out more so thanks for that info julia x

  • Hi Tony, I'm sorry to hear what you're going through. I have ILD (sarcoidosis & PF) and was diagnosed in my 40's. That was 13 years ago and I too thought nothing of it until it hit me a few years ago and I went downhill. It is normal to get emotional not just when under stress and also feel other things such as anger., because at the end of the day we do have a terminal illness, there is no cure only management, unfortunately there isnt the same help or publicity for lung disease as with some others. I go through them all and when feeling really low admit to feeling sorry for myself. The last couple weeks been bad to the point in wondering whats the point in going on but then I snap out of it. As others have suggested you need a specialist, I live in Liverpool and got referred to the Brompton, they are wonderful in every way, they try everything they can to help. is there any way you can increase the amount you see your 3yr old son if you can I know seeing my little grandchildren lifts my spirits. I have discussed transplant briefly but don' think it's on the cards for me due to my blood group and willbe past the cut off age in a few years, I understand what you mean in regards to another poor soul losing there life but that person or there family have selflessly wanted to give to help others in need so if the option is there you should take it. Take up the advice others have already given and keep in touch -, take care x

  • Hi Sadie

    I notice you live in Liverpool, I bring a group of people ( 2 coaches this year) to Liverpool every year and we're coming on 9th November for the weekend staying at the Adelphi. A few of us have IPF/PF and we are meeting up there. We are meeting 4 people from Liverpool and 4 of us are coming on the coach. If you would like to pop in and meet people with the same illness we would love to meet you. Its nice to see a few folks with nose hoses on ;-). There's not enough publicity about IPF so it would be good for a lot of us to get together.

    The invitation is open to anyone else with our disease and their carers to join us and meet people in the same boat. Anyone who would like to come please get in touch.


  • Hi Maureen, that would be lovely, it would be good to meet other people in same situation. Please let me know all info when you can. My name is Jill but could'nt register with that. x

  • Hello reggie

    I am also 57 years old and with Pneumonitisis and dont have long in this world,I have found the the BLF late in my ilness to help me cope , If u need to talk to someone there is always someone at the end of the phone ,emails are easy but to talk to someone who will listen and understand just what you are suffering emotionally and i have found i am not alone my time left on this earth

  • Hi everyone thankyou all i will reply to each of you probably during the night when I have finished the coughing routine, today I have went to places I enjoy it helps just driving out a lot of my emotional problems dont just evolve around my illness but the parting of my partner and I within the last year from a farm with her perants and our lovely son to a flat thats clearly inadequate I spoke to my ex earlier ironically she is a carer for the terminal and end of life she was so pleased I have taken the opportunity to find others she had said this befor we parted but some of the comments I have read tonight have broken my heart I have struggled for 3yrs clouding it with alchohol excuses making other people around me suffer becouse I did not understand thank you one and all

  • Hi Reggie

    I too have ILD brought about by Rheurmatoid Arthritis and I am new to this site also. I found one day last week that I was reaching the end of my tether and just wanted to pour my heart out - which I did and I was humbled by the amount of comments and support I received. I do hope that you find some comfort from the site and also to know that there are others out there with this horrible disease.

    I too am relatively young (42) and due back at the Harefield for a decision about whether to go on the active transplant list. Each day I have different thoughts about it especially as I have a 6 year old son. This disease is so frustrating especially as my mind wants to do lots of things but my body is not able. After a while I found the frustration turned to depression! After 2-3 months of being at an all time low I decided to see my doctor and he has replaced my anti-depressants which I think are starting to help. Is this something you can talk to your doctor about as they can help at least cope day to day?

    Please let me know how you get on and feel free to get in touch with me also.

  • Hi everyone,

    I wonder whether anyone is interested in a "meet the experts" event for idiopathic pulmonary fibrosis (IPF) the BLF is holding in Leeds on 26 September? It's an afternoon meeting with respiratory expects Dr Gisli Jenkins and Dr Paul Beirne talking about the condition and its management. There will also be presentations from the British Lung Foundation on BLF-funded research and ways in which the BLF can support you.

    If you would like more information emailed to you, please drop me a line at or telephone on 0191 2630276.

  • Hi Reggie,

    I must call you soon. I hope considering your circumstances that you have managed to get your housing situation out. I've got some more news to tell you when I speak to you next, take care hun and we'll catch up soon. Love you lots

    Sis xxxx

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