3.25.2009

Heartbroken

Its just a short post. It has been the worst day of my life. My weight was up at clinic but only a very small amount.
My tx dr has said that I cant wait anymore I need to either be fed by PEG feeding directly into stomach ,(or nasal gastric) or else I will have to be taken off the list and in his words, “live what time I have left”. I haven’t stopped crying since and my head is just unable to think.

I am absolutely petrified of having a PEG. I am bad enough with having a canula in my hand but the thought of a tube into my stomach just makes me physically sick. Plus my liver disease makes it risky and may not even allow it. My liver dr has already said that he would not want to take this route, but my Translant hospital say if my liver is that bad then I would be taken off the list anyway.
I would much prefer a nasal gastric tube but my hospital seem wary to do this as they have no one to train me to do it.
I havent stopped crying and this is the most difficult decision I have ever come to. A PEG is my worst nightmare but am I ready to give up the fight? I dont think i am.....but dont know if i have the strength.
I will be going to see a dietcian and stomach dr on friday and will try to let you know then.
At the moment I've not got much faith in prayers but would still appreciate them.
x

13 comments:

  1. first off dry those tears up, you will only make your self sicker. i and others around you will do that for you. i am so sorry to hear that all of your worst fears came today that is trully heartbreaking, but please dont give up on yourself you have fought so hard and is trully awful to hear that all of your hard work has come to little gain, but lets look at the bright side....if you had not worked so hard it is feasible to say by now you would have had a signifigant weight loss. that would have led to being off the list all together by now and possibably being in poor health right now...right? as for God and prayers, i personally believe in both, just because the answers we get to our prayers are not always what we want to hear but his plans for us are so much greater than what we may have planned for ourselves. so go dry your tears, find strength in those who care for you, grab somthing fatning and go talk to your mum. they always know what to do.
    always praying for you
    Laura

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  2. You've already come this far, and done soo well, dont give up now!

    If your docs do allow the PEG, you cant be scared! Cos if you do have the operation you will need to be brave for that because it will be big!

    The PEG i have been told by many doesnt hurt, its just a small button type thing.

    IF you are crying, thats fine too you know what they say about it being good for you, and releasing some hormone thing

    Il be thinking of you... (all mt family and friends are too)

    xxxxxxxx

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  3. You don't know me, I'm an official lurker, but just wanted to say that my heart goes out to you today. Just wanted you to know that you are in my thoughts, I do hope that the liver doc allows you to get a PEG and that it's not as bad as you fear. Wishing you all the strength you need.

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  4. Sweetie, i will come and show you how to pass an NG tube myself. We WILL get your team to allow you to take that option if that's what you want- resourcing is no reason to call a halt to your hopes. If a peg is the way you have to go, and your liver will allow it, then you will get through it. I know you well, and believe you are stronger than you realise. The things you take in your stride on a daily basis are things which would daunt most people to such an extent that they would give up. For goodness sake fairy, you're attached to oxygen 24/7 to keep you going, yet you still get up with a smile and are THE most wonderful friend imaginable.
    I could go on forever, and you know i often do...but know, you are never, ever, ever alone. Only one thing is forever, and you're not going to let that one thing happen. Everything else can be changed, re-assessed or adjusted. If you were to have a peg, you can have it removed after your tx; and if you had a peg you'd put weight on and get that transplant.
    I know after some sleep and a step back you will see that there is fight brimming form your toes to your ears. You've come too far to give up now.
    All the magic fairy dust and strength i have sent your way.
    Always going to be here for you. Love you xxx

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  6. Hey Tor,
    We've never met properly, but I thought I'd pop on here and send you my very best wishes and prayers, and let you know I have my fingers and toes crossed for you (this may make walking tricky, but worth the struggle I think...).
    Although we've never met, I have heard lots (I'm the LLTGL Gossip Queen), and have been amazed by how brave you've been, and I know that you can push through this. I'm also a Paeds Student Nurse, and have watched patients achieve things they never thought they'd manage through perseverance and a lust for life. It's terrifying now, and I can't even start to imagine how scared you must be, but you have managed so much in the past, and I'm sure you'll continue to do so, even if you have no idea how right now.

    Love, lots of cuddles (I make my little ones imagine being cuddled when they're scared, though I'm normally hugging them to pieces anyway - seems to help!) and all the support in the world to you. Love, Pops xxxx

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  7. You haven't reached the point of no return yet - don't give up now, you've come so far. Everyone is with you and praying for you. You are never alone. Big hugs{{{{{{{{{{{{{{{{{{{{{{{{}}}}}}}}}}}}}}}}}}}}}}}}}
    Paulinex

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  8. Hey Tor - don't let this get to you. The posts on the forum have shown you that there's many ways to go and you CAN do it. I believe in you, your friends believe in you and you will soon start believing in yourself again.

    PEGs are horrible (hated mine) and yes, they do hurt initially, they're bound to. But they do a job and if that job is going to save your life through a transplant then surely it's worth giving it a shot.

    NG feeding is something I have no experience of except for post-transplant, and it is a lot easier and less painful. If you can pass the tube yourself it's even better.

    If the hospital won't teach you then talk to the dietician when you see them and get them to hook you up with someone who can. It's absolutely your right to be taught in whatever way best suits you.

    Sending lots of love, hugs and prayers your way - keep on truckin' chuck, you'll get there.

    xx

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  9. Hey Lady,

    Keep fighting! You never know what's around each corner and your chance may come!

    We're all thinking & praying for you and I'm sure there's a little star up their looking down at your right now!

    Lots of love
    Matt n Bex

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  10. Echoing J's post, and sending you lots of love. Sally xxx

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  11. Hunni, all I can say is whatever feeding thing you can get is a means to life after transplant and you so deserve to see that life.

    Praying for you.
    x x x

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