Fibrosis has taken over

Fibrosis has taken over

Hi everybody.This is only my second post so I'm not very well known among the community although I do make a point of reading HealthUnlocked every day.

I have been suffering with emphysema for about 6 years and have coped reasonably well.I was put on ambulatory oxygen a year ago although am now using it 16 hours per day.

Yesterday I saw my respiratory consultant who informed me that Fibrosis had taken over as the main illness to be concerned about.

Can anyone let me know what I can expect from now on?

Thank you

Nistan

14 Replies

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  • The BLF produce leaflets/booklets which give a lot of useful information and advice. You will find some here:

    shop.blf.org.uk/collections...

  • Thank you mrsmummy

  • hi Nistan, i have copd + asthma and a few other things for 3 years and the only thing i know and expect is that am going to get worse.

    i think the idea on this site is that we give positive vibes but on reading your post its given me butterflys as you are one of many that has now added fibrosis to copd.. and i cant think of anything that would help soften the blow you had.

    talking with people on here was about the only thing that helped me..so if you can do that.

    just read my reply to you and thought its not much help to you and like i do with nearly all my replys is not send them but feel better for writing them.

    thought id send this one if only to wish you well .

  • Thanks hectors.All replies are gratefully received.

  • Hello nitsan just sending you warmest wishes x

  • Thank you Time-2-drink ?I appreciate that

  • "Fibrosis is not the end as we know it Jim (Nistan)" All it means is we do things a little differant and maybe slow down. I was diagnosed with fibrosis in 2008 and it has not helped but they are getting better at looking after it! Keep positive and adjust if you need to, but never think it is the end!

    I have had various ailments of mine change priority, I have far to many? I like a good moan now and then but I refuse for it to take me down. We are all so differant in the way that we are affected and deal with certain problems that they like to throw at us. I think that the more we know the more we understand. Get a list of questions that you want answered next time you see your doctor?

    Be Well

  • Thanks Offcut.Will do what I can to heed your suggestions.

  • oioi dude it will slowly get worse im sorry to say dude that is what happened to me keep walking 2 mile a day will slow the effect down it streaches ya lungs not doing so will make it faster i have to be this blunt about it cus it will prolong your life vastly i had it for 10 years so i have a fair understanding of it i have now beem transplanted in case you are wondering why i speak in the past tense i will always answer anything you need to know and good luck with your fight and may your god go with you

  • Hi. sibbkev.I appreciate your bluntness.The walking is good advice I'm sure but at the moment I'd be doing well to walk 200 yards let alone 2 miles!! I will take note of your advice. Thank you.

  • Sorry to hear about this. Just posted some links on another post so have pasted those below in case they have some useful infor for you. Only thing to add to comments about is to endorse need to exercise as your lungs get so stiff otherwise. Not certain if medications have been mention. Pirfenidone/Esbriet or Ofev/Nintedanib might help but it depends on what type of PF you have but your doctor should be able to clear that up and tell you of they can help. Here are a few links that may be of use

    1. Nice article from this site - abbreviations and links to some videos describing aspects of lung disease

    healthunlocked.com/blf/post...

    2. Patient Guide on PF - Focused more on US but lot of relevant stuff.

    pulmonaryfibrosisnews.com/2... publishes-updated-pf-information-guide/

    3. Another PF site - probably only one that focuses on PF (as opposed to a general site used by lots of folk with lung disease). This link is to a really nice general guide but check out the Living with PF community itself

    inspire.com/groups/living-w...

  • Thanks Salmo

  • G'day Nistan...sorry to read about your health concerns..I am guessing that your Dr has explained about the prognosis of IPF ?? There are two things you can do in your everyday life to maintain better health 1. Find and adhere to a healthy diet. 2. Be very careful re exercise. There are two types of of this. The first is trying to do long walks or any other exercise that will increase your heart to overwork... The second is ..Pulmonary rehab..and there is a big difference between the two...The latter will allow you to keep exercising your lungs without overloading your heart...Have you been recommended to a PR group by your Dr , if not, ask him/her on your next visit to organise this. when you commence any exercises this must initially be done under the control of a Pulmonary Rehab Physiotherapist. Do you have a finger oxymeter? Most important and please keep a diary/notebook. Very handy to write notes such as...questions you need answered by your Dr...records of your sats (the finger oxymeter) especially what you were doing at the time and what the readings were. Also record what medications you are on..amazed how many times you will be asked this.....Best wishes...Snoopy

  • Thanks Snoopy.I appreciate all that you've said.I have been on PR four times over past 5 years,the last being September last year.

    I do have an oxymeter and regularly check my stats,which can range between low 60's to mid 90's depending on what I'm doing.

    Thanks for all your advice.

    Nistan

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