Ideopathic Pulmory Fibrosis

Help...ive been diagnosed Oct 15 but in the last 3mths my breathing has got so bad im on having to use my home oxygen 24hrs a day..basically struggle to do anything without it...this cant be it..there must be something that can help to improve my breathing..i feel like i just exist not live as i dont get out much & cant do much..it has also gave me heart problems too..i feel im on the way out & nobody is doin a,thing to stop it..PLEASE HELP IM DESPERATE FOR ANY ADVICE..Im only 46 .

12 Replies

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  • Hello Steve.

    I do not have the same condition as you but I can well understand your panic. I am 42 and often feel like I am 'on the way out' too. We all have those days and sometimes they are much worse than others.

    What has your doctor told you or have you discussed with your medical team how you can help improve your breathing? I have been to pulmonary rehabilitation and it has been very helpful. What kind of support system do you have? It is important you have people to talk to whether it be friends, family or your medical team. You are not alone. Talk about how you feel. You'll be surprised to find that when you open up to people around you they often help find helpful solutions.

    I am sorry I can't be more helpful. I am sure others will come along who can offer better advice. Just know this is a great place for support and to give support. Please let us know how you are.

    I am thinking of you.

    Cas xx 🌸

  • Great reply Cas.

    Stevieboy are you getting all the help you are entitled to? Are you under a consultant? What help are you actually getting? x

  • Hi Stevie, I also have IPF. This disease progresses at different rates at different times and can remain stable for periods of time. It sounds as if, since diagnosis, you have gone through a period of rapid decline. I assume that you are under the care of a consultant. If so, there are 2 medications that can be prescribed to slow the progress of the disease, Nintedanib and Perfenidone. You need to ask your consultant about this although you do have to meet specific criteria re lung function to be eligible. Also, considering your age, you do need to be talking to your consultant about a lung transplant. I know this is a frightening prospect but your consultant will be able to talk this through with you. You're not alone Stevie and please get in touch with me if you want to ask any questions.

    Best Wishes,

    Helen

  • Firstly thanks to everyone who has replied so quickly..yes Helen im under a consultant but feel as though he aint much help tbh....also just to complicate things im H.I.V positive & transplant doctors say my CD4 needs to be 400 or more to even be considered for a transplant..mines is currently 190..also been told i will need a heart & lung transplant becoz of dodgy ticker....im am currently on Perfenidone..have been since Dec 15...it aint slowing my illness down like it designed to...im single my partner died 6 yrs ago...but i have a lovin family but are a bit unsure how to help tbh...the nearest pulmonary support group is 26miles away from my house...so dont know wot else is out there...i live with my friend who literally does all the house hold chores becoz i cant...its horrendoes disease to have...how do u cope Helen...how old r u...can u get a transplant...i would have one 2moz f i could get one but ive been told my chances are pretty slim due to my H.I.V status...i see no happy ending to this situation...already checked out Digitas in Switzerland..thats how i feel x

  • Just read your post and the brilliant, caring replies Stevieboy and my heart goes out to you. Clearly more needs to be done for you and your consultant needs a bit of a shake.

    Please don't despair and do stay in touch. We are all here for you. Xxxxxxx

  • Thank u for ur quick response Sassy59..im a big believer in Positive Mental Attitude...i wouldnt be here now without it tbh...dont worry my consultant is gona get a kick up the ass as my 2 sisters who love me very much r comin to the next appointment on 8/2/17 to have words with him about the lack of treatment & support ive had so far...ive just been struggling alot recently trying to adjust to how my life got to this but i will get there x

  • Great attitude Stevie and loving your sisters. Nothing like family to back you up. Take care xxxxxxx

  • Hi Stevieboy, welcome to the site though it sounds as though it's the last place you want to be! I'm sorry you've had so many knocks in your relatively short life.

    It is very hard, really hard, when you find that breathlessness puts the brakes on everything you want to do. But it doesn't take way the person you are underneath. You still have the strengths and the coping strategies which have got you through so much and so many losses. You maybe can't remember which pocket you put them in at the moment, but they're there somewhere!

    You've found out about Dignitas. If that is to be an option for you it isn't for now, but there is joy and love in your family and friends once you can find a way through the fear and frustration. Why not phone the BLF helpline - office hours. They're qualified and very good.

    And come back soon Sue x

    03000 030 555 - helpline number

  • Thank u Watfordgirl for ur quick response...ur rite im def not at the Dignitas stage yet & hope not to be for along time yet...just very frustrated about how my life is these days & how im struggling to do everyday things...a shower used to take me 10/15 mins now its 45mins to a hr..is like a military operation to just get clean..its crazy...but i will get there..i am a strong person i discovered that after my partner died & had to deal with his vulture family trying to peck away at his things b4 he was even cold & i came thru that & trust me there were days i didnt think i would...i thought after that id get a break..who was i kidding...just about putting my life bk together & gona put myself out there to meet some1 when this illness nonsense started & basically took over my whole life..i used to b know as the life & soul of the party now i feel all i talk about is how ill i feel or am..it awful...it not just my body its affecting it my personality too & that aint good x

  • I do feel for you. I do know what you mean about illness affecting personality, but when your partner was ill did you think any less of him because he wasn't the life and soul etc?

    Try the helpline. See your GP about occupational therapists coming in to make adjustments to things like the shower. Ask for any help you can get! Get a toweling robe to save drying yourself. Ask about changing your consultant.

    Maybe one thing at a time - but there'll be plenty of suggestions from here.

    Take care Sue x

  • So touched to read your postings, Stevieboy03. Lots of good replies above mine. Would a stool in the shower help?

  • I know how you feel as I also have pulmonary fibrosis and am on oxygen 24 / 7 8 lpm walking and 6 lpm while resting I also have it attached to my sleep apnea machine the only time I go out is doctor appointments with 3 tank's of oxygen and have to have someone drive me keep your spirits up

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