Hi I'm 30 years old and over Christmas I was rushed into hospital with a severe chest infection which needed 100% O2 and back to back nebulisers iv antibiotics and steroids for the following 4 days. Within that time I had a chest ct scan and they kindly informed me that I have interstitial lung disease ( pulmonary fibrosis) and it was significant. I have had a 6 minutes walk test and my sats dropped to 73 which isn't good so now I'm on oxygen at home when I'm up and about and when out walking. At rest sat down anywhere I don't need oxygen my sats are 96. I have to undergo further tests this week. Blood gases spirometry test and I'm to do breathing rehab twice a week for six weeks. All this will determine what sort of fibrosis I have altho they have told me it is progressive and I will eventually need a lung transplant. I am totally broken I'm only 30. I have a husband and a six year old daughter. I need support from others going thru the same. I do have my faith and I do believe that if it's in God's will I will be healed

22 Replies

  • Oh my love I do feel for you ,you are so young , but you have come too the right place we all care for one another and we will help all we can

    I'm 73 but really feel when someone so young asks for help

    Please take care do as asked of you


  • Thankyou for your support

  • Afternoon.

    And you couldn't have come to a better place. We all have various lung conditions on here but it boils down to the same thing we all have trouble breathing.

    It is very very scary to begin with but its sounds like your getting the right treatment, so we can do the supporting anytime someone is always available to chat to or you can ring the fabulous team on the helpline.

    I myself have severe Emphysema and am on oxygen the same as you, you do adapt to things you just learn to do thing slower.

    If you need anything just shout everyone on here are lovely.

    Kim xxxx

  • You are so young to have this problem but you will get lots of advice as to coping strategies and loving support. I Will pray for you.

  • Thankyou for your kind comments

  • Thankyou for your kind words it's nice to know there's support out there

  • Hi and welcome, sorry to hear what Uve been and are still going through, Uve come to a fantastic place for support and we're all here to help if we can xx Sonia xx

  • Thank you for your kind words of support. I know everyone here has similar issues it's just still really hard when it's "me" you know?

  • We all feel the same sometime, try not to let it get to you, everyone is entitled to feel sorry for themselves sometime!

  • Yes I do, I have lots of days like that, since I was a child to be fair, it's never easy but more bearable when u have people who understand what ur going through. My family are fantastic but we hide a lot of suffering so they don't suffer, on here everyone understands and will do what we can to support, advise, educate and even make us giggle. xx Sonia xx

  • Hi Ejbid

    Welcome to the site. I'm so sorry that you have to deal with this, at such a young age. We're all here for you. Day or night, there's usually someone on ,you can chat with. If you type in " pulmonary fibrosis" in the search bar, you can read other posts about your condition. I'm sure it would be most helpful to you.😊

    Rubyxx 😊 😊

  • My heart goes out to you ejbid. Of course you are devastated, both because its such a shock to get this diagnosis, and because you're so young.

    Thankfully it sounds like you're getting good treatment.

    Im assuming you will be doing what's more usually called pulmonary rehab. I did it not so long ago (I have emphysema and bronchiectasis) and there were a good few people there with pulmonary fibrosis. Everyone benefited so I'll be crossing my fingers for you. x

  • Thankyou so much for all your kind words of support. Yes I will be doing pulmonary breathing rehab so I'm hoping it's going to help with the techniques I'll learn and be able to cope a lot better.

  • Im sure you will :)

  • Hi ejbid and a very warm welcome to you, although I am sorry to hear of your struggles. I am pleased to hear your medical team are so proactive and hope that eventually your medication regime will help you. I have a different conditon Bronchiectasis which I have had all my life but because I was a baby I didn't have the shock which you have experienced at diagnosis. Please know we are all here for you.

    Love to you and your family,

    love cx

  • Just want to add my warm welcome to you Ejbid, we all have our health issues on this site, but for you to be having this much illness at such a young age, makes us all feel the greatest sympathy for you and your family. We can only hope that whatever treatment they offer you helps you to lead a long and healthy life . I know how worried you must feel right now, but make sure you are under the best doctors for your condition , and then trust in them to do their very best for you. If it helps you at all, I was told at 15 that I would most probably die by 30 ( mind you they hadn't got antibiotics at that time ) they later revised it to 60....and I can tell you that I have well passed 60 :) :) so never give up, research your illness as well as you can, and do everything that you feel will help you . You will learn a lot from this site.

    All our love is with you Ejbid

    Stay strong

    Love Sohara

  • No wonder you're heartbroken and so must your family be, reeling from this news, and especially concerned about your little one, parents always think of them first.

    There are a number of younger people here, and others awaiting transplant, so you will make some good friends who really do understand what you're going through. I can't pretend to.

    I know the biggest ILD unit in Europe is at Royal Brompton, so if you are able, get referred there, or to another specialist unit, there's a list on this website, under the section "Living with PF" actionpulmonaryfibrosis.org/

    I wish you strength to get past the shock of this diagnosis. Meanwhile get on the pulmonary rehab course, to get your lungs as fit as possible so you can improve or at least stay stable whilst your doctors come up with a plan.

  • Oh ejbid I am so sorry you have got this awful disease, and so young as well. There is always hope though and new treatments are being found all the time. I hope that one day we will all be able to be cured.

    I have only copd but I know there are quite a few on here with PF who have had it for ages and they are not going anywhere soon. Have hope my love and try and stay positive. Any questions or problems just fire away. There will always be us to support and help you all we can. A big hug for you. xx

  • Hello heartbroken I know exactly how you feel as I also have Interstitial lung disease. Yes I may be older in my 50's but it is still devastating when you go from healthy and fit to being crippled by this evil disease. All you can do is keep trying to carry on as normal a life as possible, doing the things you enjoy especially family life which is the most important. Make sure you ask your consultant every question you think of, write things down so you don't forget. But please remember you are young and have every thing to keep focused on for your future and that of your child. Family is everything and with medical help you can adapt to live and smile again. I wish you happiness and a brighter future. Jenny

  • Please don't break your heart, live for today tomorrow will take care of itself. That was my fathers philosophy and it's worked for me. The doctors will do all that is possible for you, have faith try to make the best you can of every day even the bad days can have something to make you smile but you may have to look for it. My problems started aged 3 and I am now 74 it's been a pretty rocky road at times so I really do feel for you. It is hard to be strong but I had my three daughters so I had to be strong for them. I hope all goes well for you. I have a friend who's husband had a double lying transplant aged 53 should have been a heart too but his heart had repaired itself so it wasn't needed he was a new man and now at just turned 70 lives a full and happy life so never, never give up hope.

  • Hi and welcome to the site you will find support by the bag load on hear.

    That was a nasty infection and you are so young I was 42 when I was diagnosed and I thought that was young take care

  • Hello Ejbid,my heart goes out to you.So young to be saddled with lung disease.With so many people now having COPD at least there is lots of research happening,hopefully something will be found to ease your condition.One lucky move,you found this truly amazing site,when I first found it I was really depressed but everybody here is so kind and understanding we are like a big happy family.We will support you in any way we can so please join in and become one of the family.Best of luck D. 💐🌹🌺

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