Advice on life expentency

[Ireneok]

I was diagnosed with NSIP fibrosis 9 years ago . I still appear to.managing this with correct medical advice etc but I am very unclear on actual life expentency after initial diagnosis.Can anyone help me as a consultant shrugging his shoulders isn't really an answer !

[sassy59]

Hi Ireneok, nobody can really predict life expectancy for any long term illness. Everyone is different so your consultant can’t tell you anymore than we can.

Take each day as it comes. Hoping you have many days ahead of you. Xxxx

[Ireneok in reply to sassy59]

Thank you for your advice it's just they used to say 13years but they have removed this info from the web so was wondering if that had been changed. Trying to decide if I continue to work and save for my retirement or just enjoy time I have left and party

[sassy59 in reply to Ireneok]

Enjoy every day and do what you want to do if you can. Wishing you well. Xxxx

[Hidden in reply to Ireneok]

If you can do what you want to do and have money left over save it for your retirement, if you don't spend it.

[Ireneok in reply to Hidden]

Thanks for your reply just suddenly seem to need to know the answer to this just now. Don't know anyone else with nsip I can talk to and there is so little info out there. If I get to your age and stay as positive as you and your wee dog i will have done okay all the best . Thank you

[Hidden in reply to Ireneok]

I think what played a big part in me reaching this age was not pondering too much about what ails me or how long I may have left, but following the advice of those qualified in health matters, and enjoying each day as best I can. I think my dog does the same.

[Oshgosh in reply to Ireneok]

i know what you mean,mydiagnosis is fairly new.

I get really frustrated by the lack of information for patients.

When I go to appointments,they say I’m very complex.

It’s hard for them to work out what’s happening with me.

There’s nothing note web for patients,the available literature is for professionals and. I cant understand all of it.

[Oshgosh in reply to Ireneok]

Yes,the lack of information annoys and irritates me.

The only information available is of a medical nature.

It doesn’t help that it’s so rare there’s no charity for this disease.

I’m so busy,keeping well I have no time to think about setting up a charity/ group.

I do hope you are managing to keep well

[Shazrab]

Hello Irene ok, I had been quite unwell for some time but my Gp sent me to respiratory dr I was sent for X-rays then ct scans , the dr I was under was hopeless , I hadn’t even seen him but his fellow dr who was helping him out then I didn’t get appointment football 6 months I couldn’t believe I’d have to wait that long to get results and maybe some help. My gp got the results and that’s what they said I had , there are 2 drs who own the practice and one person who was training to be a respiratory dr they all had a meeting and decided I should know so I was told that is what I had. I’m so glad to say it turned out to be a mistake . But I was told life expectancy was 5 years and I was already so unwell for about 2 years I was terrified and had to share the news with my children. The point is I know I don’t have it but because I thought for 6 months I did there was no putting anything on hold we decided to do as much as I was able to do as I was struggling fast especially with no medication. I wonder have you ever been given a tablet to slow the progression of this as I was told there was one not long out and if the respiratory dr put me on it then there’s a chance it wouldn’t help. My advice to you would be to give up work and start living your dreams with the people you love, that’s if you can afford to. If what I was told was true 5 years then I think my time on this earth would be gone . Enjoy yourself while you can PLEASE , we all should if we are fit enough to but try not to concentrate on how long your going to live because no one knows that answer . I say this to you because I got a bit obsessed this year wanted to know what stage my copd was at as I suddenly went down hill and felt like I didn’t have long to go . If I had the strength the energy and a little bit better fitness I could be doing the real stuff I enjoy. Don’t wast your life always working enjoy enjoy enjoy. No matter how sick we may be or even a healthy person we don’t know how long we’ve got to live . But with your illness I think you’re probably going to have an idea when you’re time could be near because you’ll start to get more unwell but everyone on here would say stay positive I’ll just say take care and I’m sorry the post isn’t really the way I wanted to write it and my apologies for it being so long. I think you’ve done great 👍 still working and having this for 9 years well it’s so good. I’m sorry to hear you have this illness it must be hard at times . So you take care of yourself and remember your doing great . You should find that there’s others who have this. I wish you well 🌹🌹

[rossie1942]

Do you enjoy your work ? Working keeps us active and in touch with others which keeps our minds off our illness. Danger is if you give up, after the initial partying you may find yourself a bit isolated. Different if your job is detrimental to your health. I heard a talk by medical director of a hospice who said that they avoid giving timetables as somebody they expect to be dead within a month is still around 10 years later. Good luck, I hope that you continue to stay reasonably well.

[stamford1234]

Glad to see you are managing from day to day. A shrug of shoulders usually indicates, don't know. As you say, not helpful but the best they can do. Maybe now is a time to have a review and a chat with your Dr or Consultant about any of your concerns over the progression of your NSIP Fibrosis. In the meantime don't dwell on it too much and enjoy every day. All the best

[Izb1]

Hi Ireneok, so sorry to hear your consultant has left you with unanswered questions, but they really cant tell you how long you have left to live. I cant advise on your NSIP but would say that if you feel well enough to work and you enjoy your job then carry on, keep postitive, look after yourself and do the things that you want to do, without worrying about the future. I wish you all the best x

[hypercat54]

My advice is to keep laughing, keep loving, and enjoy life as much as possible. We never know when it will end as you pay your money and take your chances. x

[goat-lady]

Having been in a similar position with Hypersensitivity Pneumonitis I sympathize. As I was 55 and could take my pensions (small as they are) now on the grounds of ill health I have done just that. Not knowing if you will be here next year or still around in 10yrs is very destabilizing- even though the same can be said of everyone!! Only you know your circumstances and priorities. What I would l say is , don't rush into anything unless you have to and do get your Will written. It's tuff but you may well feel more in control if you can bear to write a Will. And, most importantly things change. My HP is now mainly under control but I have been left with severe asthma that is not really under control yet. And I do have other health issues. So I am glad to have taken early retirement with plans for a small business- health permitting. Good luck.

[Caspiana]

Hello Ireneok . 😃

As everyone has pointed out, no one, not even the best doctors in the world can tell you how long you will live. If you did find a number on the internet, it is merely a statistic and you know what? You are not a statistic.

If our lives are to be a date and a dash _____ ~_____ then may I suggest we take that dash and make a helluva life with it before that end date. The end date is inconsequential. The dash is very important.

Sending happy thoughts.

Cas xx 🙋🐕🐾