Interstitial lung disease with no full diagnosis

Hi all, I'm Jez. I'm 29 and I have interstitial lung disease. In may 2014 I had to go to A+E due to "being very poorly". As it turned out I was going through chronic respiratory failure. My sats when I went in were somewhere between 40 and 50 and we were struggling to get them back up to a safe place. Even with the cpap it still wasn't good. The doctors decided I needed to go on a respirator so they could do a flush and some tests and I was on the ventilator for 11 days in ITU. I came round from the induced coma and was absolutely terrified as I had been having the most horrific nightmares/hallucinations. Those propofol nightmares are so terrifying. It took me 2 weeks to learn to walk again before leaving hospital. Somehow my sats had gotten to a safe level again, I think mainly through high strength steroids. I was discharged with supplemental oxygen and steroids. And I almost felt like I was back to normal. Earlier this year I had a flare up and ended up in the hospital again for another 2 weeks. Forward to now and I'm on 5 litres of oxygen at rest 24/7 and 15 litres on exertion. I'm really not getting any better and am looking at a transplant as the only way forward. I need to lose another 10kgs of weight before I'm eligible for that though, I've already lost 10.

I've been told I have interstitial lung disease, showing emphysema with some fibrosis. But I've not been given a proper diagnosis as everything they've tested for had come back clear.

Anyway I just thought I'd introduce myself and share my story.

24 Replies

  • Sounds horrendous. It is obviously a very strange mixture of diseases you have. Has there been a cause, or trigger? It seems to have come on very suddenly. Are you happy with your consultant and GP? They are key figures in all this. Try to push for more clarification and explanation but I imagine you are too exhausted to be assertive. Have you any support from family and friends?

    I can't help with the condition itself, just encourage you to hang on in this forum. There will be people here with conditions that are similar. Interstitial lung disease with scarring sounds like pulmonary fibrosis? Is the emphysema the usual type, i.e. a version of COPD? Or is it emphysema caused by fibrosis? Any of these things can be difficult to see on scans and X-rays.

    This site is amazing;y supportive.

    Love and hugs

    K xxx

  • Thanks very much for the reply. I've got full support from family and friends and am happy with the consultant. Gp has almost nothing to do with it. Best way to describe it is cystic I suppose, the scans show the lungs almost like Swiss cheese. I've been told I've got emphysema with some fibrosis but they can't figure out what I have that would have brought this on at this age. I think, whatever it is, I must have had it for a very long time and not realised until now. I've always been over weight and I've always put any breathlessness down to being unfit. I did smoke from the age of 17 until 25 but the doctors seem to think that that probably isn't the main cause.

  • Very pleased to make your acquaintance Jez, wow! was all I could think when I read your post, what a story indeed! you've been through so much and you're only a young custard! I can't tell you how sorry I am that you have all this to contend with and I think you've done really well to lose weight when you must be on a lot of meds.

    It will be great if you could get the operation soon and get your health back, I will be hoping and praying that you have every success when the time comes,keep us in the picture please 😃 thank you for sharing your story 😃huff xxx

  • Thanks a lot. I am on prednisolone which really doesn't help with weight loss but I also have Orlistat prescribed which is a fast binding drug. And yes it's been quite a lot to come to terms with all of a sudden.

  • Welcome to the site. It sounds like you've been having a horrendous time, you poor thing. Think others will be better qualified to comment medically - I just wanted to send you some warm wishes. Also to say 'well done' on your weight loss and keep going - sounds like that would open some positive possibilities for you. Really hope there's a 'break' for you soon x piggi

  • Thank you very much for the warm wishes.

  • Hi Jez and welcome to the Community. Ýou certainly have been dealt a mixed serving on your plate. I like those above I am not able to provide you with any information about your conditions.

    You may well find more help and information by looking at the BLF Web page or by calling their Pulmonary Nurses on the freephone number. That is also free from a mobile if you are within your contract free minutes limit.



    03000 030 555

    Kind regards, Rib

  • Omg how awful for you and so young as well. I can't imagine how you must feel. Sending you lots of healing vibes and hugs. x

  • Welcome to the forum.

    You really have been through the mill, I'm so glad you've found us and hope you feeling better soon.

    Kim xxx

  • Hi G and welcome. What an absolutely awful time you've had, and at such a young age.

    I too, can't help on the medical side but, it sure is a lot to have going on all at once.

    You've done really well with the weight loss so far. You'll soon get the rest off and hopefully, new lungs will be not too far off in the future. Until then, stick with us, we'll give you plenty of support in the mean time. xx

  • Hi Jez sorry to hear you are having such a bad time, hope things improve for you soon. Keep in touch with us it will help. Joyce.

  • Hi Jez sounds as if you've been having a rough time, to say the least. Can't really help but just wanted to say welcome and hope things improve for you xx

  • Hi Jez,just to say a quick welcome love.Oh my,so much to contend with at your age,you sound like a tough nut though(meant nicely!) & Im sure you will come through it all,with flying colors.

    So glad you have the support you need,& good medical assistance.

    Good luck with the weight loss,it is hard,but Im sure you'll get there.You have a great incentive,as being able to get on that transplant list.

    Do keep in touch with us,theres some wonderful people on here,& some waiting for transplants,so it might be handy for you,to swap notes!

    Hugs,Love Wen xxx

  • I couldn't believe you hadn't received a full diagnosis until I read on the BLF website that there were 200 types of ILD, and all of them are rare. Hope you do get a transplant .

  • I also have ILD no known cause as yet , steroids and oxygen, do not see my consultant until February , it's annoying because you can't let friends and family know what has caused it . hope you get your transplant soon 😀

  • you are very strong. keep strong. take care...

  • Hi , sorry to read of your problem , I to have Pulmonary Fibrosis - I went into hospital Oct 1013 - like you 10 days in a coma then a further 2month + , before I could go home , I was 72 years , so not eligible for a transplant - but I was a fit person , still was skiing twice a year , my disease was from a side effect of a tablet - I to felt like I was getting back to normal ( within reason for my illness ) but had set back like you , and have had a few since - you have to get back each time , sometimes you think you aren't going to make through this one , but keep going , you read like you have the strength of character to do it , You will have good times and bad times - I am on 4 Ltrs oxygen 24 hrs day - I can get to thinking I don't have problem and they have made mistake ,then it hits me with a sledge hammer for about 7 - 14 days - you gotta fight back ,Good Luck , I have told you my experience to help you - if you need any practical advise please contact me , John

  • Thank you for sharing with me. I'd like to think I'm a strong person. The hardest thing for me is finding the motivation or will power to get up and exercise because I can only do so very little before my sats drop very low. And my legs feel like they're twice my age too which doesn't help.

  • I really do need to start exercising , but feel too week, going to get my bike out and go out with my oxygen , see if that helps

  • I wish it was that easy, I've got a small exercise bike and can only go for about 60 second before having to stop. I'm thinking about getting a treadmill so I can do some walking without leaving my oxygen.

  • I will probably be the same but I have to try because all I read about is we have to be fit and to keep our lungs fit

  • Yes, you are definitely right, I just have a problem with leg strength (2 weeks in hospital really doesn't help). How much oxygen do you use on exertion? I need to use 15 litres and at that rate the portable cylinders last less than 30 mins.

  • I'm only on 2 ltrs so hopefully I will be ok, the 1st week out of hospital I could not so any steps on a cross trainer and got panicky and upset, tried once more and just can't do it. I need to get some willpower behind me 😁

  • I want to join a gym but don't want to waste my monies😕

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