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Thread: Summary of what happened at Papworth Hospital today

  1. #1
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    well i had a discussion with a consultant and another guy. he told me that a transplant is more likely than not, but not definate.

    he put it in perspective like this: if i have 5 years to live as i am now my quality of life will not be very good compared to you guys. if i have the op (because its still low odd of survival) if i have 5 years to live with new lungs, then my quality of life will be the same as you guys, but there is very good chance that i could survive much longer than that and live a full life and a good quality of life. so if im offered the op theres no way i can turn it down i have to have it, its a no brainer if you ask me.

    he also told me i wouldnt need a heart transplant at that stage as the heart has good powers of recovery as its my lungs that are the problem. so the heart wouldnt produce the excess water which has caused my liver to swell so all of that is a total about turn and all would recover.

    i have to go back for 3 days for the assessment and lots of tests, its a full on 3 days so would have to stay in a b&b in the village as there are no means of staying at the hospital.

    in the meantime with the new diuretic they will up the dosage to get the water off so hopefully allowing the liver to get back to normal size, then my intravenus drug will have to do a lot of work to control everything, as the diuretic isnt a cure for the swollen liver just a remedy to get it smaller. so there is lots of work to be done and i need to make a significant improvement if im not going to need a lung transplant

    so time will tell......thankyou for listening to my problems, sorry its long winded
    Mick

    Sunridge Woods Villa Oct 2000 & 2002
    Esprit/Calabay Parc Oct 2004
    Sunset Ridge Oct 2008



  2. #2
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    Crikey Mick!!! So much to get your head around. I can't really give you any advise as I don't personally know anyone who has been in your situation.
    I know I'd be scared out of my tiny mind which isn't really what you want to hear.

    I know the doctors will do what's best for you though and you will get through this.

    Always here for you

  3. #3
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    Quote Originally Posted by Isafari, post: 260239

    Crikey Mick!!! So much to get your head around. I can't really give you any advise as I don't personally know anyone who has been in your situation.
    I know I'd be scared out of my tiny mind which isn't really what you want to hear.

    I know the doctors will do what's best for you though and you will get through this.

    Always here for you
    i know di it is, my head is all a wash right now, i cant think of anything else really and its scaring the living hell out of me. the thing i cant get my head round is the fact that there is still short odds after a lung transplant i thought it was way better than it actually is.

    he did say that because every one is different, and the healthier you are before the op goes in your favour, well apart from this there is nothing wrong with me, so that bodes well if the op is needed. as i said i could have a full and normal life too, but if i carry on going down hill i could possibly not be here in a few years time

    next week in london i have to have a CT scan and a lung function test which is very exhausting to say the least and can be painful as you exhale as much air from your lungs as you possibly can it hurts :(

    whatever will be will be, and who knows what that is
    Mick

    Sunridge Woods Villa Oct 2000 & 2002
    Esprit/Calabay Parc Oct 2004
    Sunset Ridge Oct 2008



  4. #4
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    Will be thinking of you - I'll keep in touch. Sending me texts from the Uk won't cost you any more than if I was still in the UK (hope that makes sense)
    The extra charges go on my bill with texts being 45p instead of free to send - but still free to receive.

    it all goes smoothly as possible for you

  5. #5
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    Big Mick, we're all thinking of you :)

  6. #6
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  7. #7
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    Quote Originally Posted by ukwdwnut, post: 260221


    thankyou for listening to my problems, sorry its long winded


    We won't ever mind Mick.... Your a lovely bag of wind

  8. #8
    Administrator Tink's Avatar
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    Stay strong Mick.






    Welcome to our new home! It's a lovely and friendly place. If you haven't joined yet, do register. It's a great place to make friends and share all those Disney secrets!!

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  9. #9
    Senior Member uscwest's Avatar
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    Wow Mick, that is quite a load to think about, but you are the one who has to decide what sort of quality of life you want. You have our support no matter what. You'll be in our thoughts.





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  10. #10
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    That is definitely a lot to take in on one day. However, it sounds like the doctor is a straight shooter and telling you how it is. Don't know about others, but I like that. Facts can be hard to hear, but I would rather hear them than eat a sugar coated mess.


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