I am scared now but I am still trying to be Positive. mattcass Posted by mattcass 5 hours ago 9 comments

Why Oh Why did I look at the worse outcome of my IPF, I kept thinking to myself I don't know why ( to much time on my own to much time to think ) what if I was refused a transplant for some reason is there anything on this page that would reassure me, well it certainly opened my eyes the words fatal are mentioned before transplants becomes an option, My age group is just over for not getting one or being recommended for one. If you someone know or have heard of anyone who is 62 years old or older it would me feel better till I talk to chest consultant. mattcass

mattcass Posted by mattcass 5 hours ago 9 comments

16 Replies

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  • Matt, it doesn't pay to read to much about your illness as it always shows worse case things that can happen. I wish you luck.xx

  • Hi sylvi thank you, this was the first time I have ever looked at the worst scenario that could happen to me and I regret it now. But today is a new day and I have had good feedback to reassure me that all is not all bleak news, I also spoke to Vicky from BLF who was very nice and understanding she gave me questions for my GP, RA. Chest Doc.mattcass

  • Hi think Sylvi is write never good to google. For me ignorance is bliss . Really hope things stay positive for you xx

  • I would say that I find knowledge empowering Matt but lately I've been wishing I had less enthusiasm for it and was more of an ostrich. I don't have much time on my hands at all but find myself waking and googling stuff in the wee small hours - usually a big mistake. So there's always a worse case scenario but then there's usually a best too but its harder to find. I mean if you google RA the image that greets you is always of a gnarled and very deformed hand. But this is the hand of an old person who would have missed out on most of the treatments available now so its hardly representative. I'm sure the same applied to your lung condition so please just try and live for the moment. Any of us may walk across a road and get run over but we can't live in fear of this - death is the great inevitable so its how you love in the here and now that counts for everyone. Easy to say I know but I'm telling myself this too! X

  • Oops I meant how you live - but love will do too!

  • Hi TildaT thank you for your replies, mattcass

  • Hi mattcass,

    Having time on our hands is not always a good thing, and all the information we want is there at our fingertips. As Tilda says, we all go looking for the information we want, but what we find is often not satisfying or frightening.

    I can understand your misgivings about whether or not you will get your transplant, but you can't rule yourself out because of your age, until you are actually told.

    62 years of age is not considered old these days, so my advice for what it's worth, is keep your chin up and enjoy each day as it comes and let tomorrow take care of itself.

    I have a very busy life looking after my husband, but I have too much time to think and sometimes I tie myself up in knots worrying about one thing or another.

    Eventually, I mentally tell myself to move on and stop torturing myself with stuff that I can't do anything about, and it works for me, so have a try at it yourself. I think it is called, mind over matter !!

    Take care and be kind to yourself, June xx

  • hi Matt, I can imagine that this is weighing heavily on you, and it's always hard to try not to think about it when it's the most important thing to you right now. Life itself is very uncertain, but I do think that you saying that you're trying to stay positive is the most important thing. Whichever way the decision goes you'll need to stay strong and focus on getting through everything as well as you can. So maybe it would be good to look for some real success stories as well to balance out the scary stuff? I don't know much about it, but I think that transplants are hugely more successful now and can have great outcomes too, so do hold that in your mind as well. It happens for loads of people, so why not you as well? polly

  • Hiya, the internet is a two pronged thing for me! One it gives me good Advice, two it shocks me with info that might happen or might not!! Best to just speak to the transplant co-ordinator Matt I think. All sites, I suspect, including our, are full of advice that some of us will have to overcome and some won't. I suppose its the be true and correct to your knowedge and experience bit!!!! But for me Matt, information is knowledge but from trusted people or sites like your transplant co-ordinator or BLF helpline or nurse. Its a very worrying time but you are a brave person who has gone through so much already and this op potentially can make rtings and your quality of life so much better.

    For me phone the real experts tomorrow!! Lots of Love to you and yours, ps if you google Ra you come up with all sorts of worrying co-morbities too, but haven't had any yet!! !! Sleep well xxx sending hugs xx A

  • Hi MC, Pay's not to read too much internet, If I had believed all I read in the first few months of returning home from hospital I would have given up there and then.

    Luckily I chose the path of being positive and exercise. Its nearly 3 years now since I first fell ill and I am still finding improvements in my condition when all the information is telling me I should be deteriorating.

    In the first year there were many ups and downs, just getting to grips living with lung disease and the limitations that come with it isn't easy. The main thing is staying positive and working hard at staying as fit as possible. Don't become a couch potato and keep active,this just makes you feel so much better because you know that you are doing something to help yourself.

    My breathing definitely gets worse if I sit around too much and with that comes negativity.

    Promise me you'll give up reading all that internet stuff and concentrate on staying as fit and healthy as possible.

    Get all those around you to think in the same way too, I won't allow any negative talk around me at all as this only serves to drag me down.

    Keep strong MC

    Tony

  • Hi Tony thank you, this is the first time I have not a positive outlook it's only when I cannot sleep that's when I thought to myself what if there was a reason that I was refused a transplant for one reason or the other the over 60's paragraph made me shudder, but believe me the minute I get up I try and to improve my mobility from the day before two flights of stairs every second day, the breathing controls how much I can do again a slight improvement on this, only I notice this I am starting yoga and thi-chi on some of the advice I received from Vicky from BLF helpline, Tony it's the thought that I am not on any meds either for my IPF or my RA is my chest doc waiting on my case being taken over and leaving this up to them, I have dropped my steroids from 60mgs to 30 in two weeks I know im leaving myself open to flares but this is what the Rheumy Doc wants. Good Luck,MC

  • Hi Matt

    Just read your blog....you've been offered so much support on here but just wanted to add that I'm thinking of you, it's horrible that feeling isn't it.....scared and not knowing what's going to happen? I'm sure everyone will do their best for you though and I hope things become clearer for soon and that you're feeling brighter today. Xx

  • Hi Angie thank you for kind words, as you said the support is great by lunchtime yesterday my positive attitude was back and the outlook for me is far clearer BFL helpline ( Vicky ) was brilliant,Good Luck mattcass

  • Scared myself sh*tless the other day Matt when I researched my newly diagnosed RA on Google, then realized I was reading other people's stories...not mine, and that I just needed some adjustment time.

    Meditation works for me to calm down and get a balance, as does keeping my head where my body is or living in the moment as the mindfulness teachers call it. It's all we really ever have, this moment .

    Is 62 old? Dammit! I'm 62.

  • Matt - just like to add my best wishes for your treatment and recovery. We may never meet but that doesn't mean we don't feel the pain of strangers. Keep up that positive attitude - it will get you through. Good luck

  • adding my best wishes you are a brave man and 62 isnt old you could live another 20 years! x

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