today has really taken it out of me.

[misdee]

usually i try to be positive, but right now, i cant be. dh is dying. the only thing that can save him is for someone else to die. he is getting weaker each day, the meds are supporting him, without them he would've died long ago.
seeing him today with the line going into his neck scared me. i know he is ill, but sometimes i forget how ill he really is. i know that this could the last summer we spend together. he is going downhill, and fast. the docs are trying to keep him stable, and he is fine for a little while, then they have to edmit him, adjust/try new meds and fingers crossed. i'm sorry for being so down, but i need to let this all out.

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had a visit today from SS, they asked what i'd be doing if i wasnt a carer. my answer, living life, not just waiting for that damned phone to ring.

Misdee - don't apologise for being down - please! You're going through hell at the moment. I'd buckle if I were in your shoes. You're doing so damn well just to keep going. I'm praying he'll get the transplant for your sake and the childrens.

Oh misdee - you always sound so strong here and your strength amazes me. Few of us have any idea how difficult this situation must be for you. We're all rooting for you and Peter and wishing that he will get his chance.
Please don't worry about letting it out here - that's part of the purpose of this place - I wish I could do/say soething that would be even slightly useful, but I can't. Please know that you are in everyone's thoughts though all the time and keep offloading as much as you need to here. I'm truly sorry you're on this awful rollercoaster.

just cant do it. its his birthday saturday, he'll be 26, so young, yet so close to death. its so unfair.

Misdee don't give up on hope, hope will keep you going......

just been a shitty week.

what can i get a man confined to bed most of the time?

You're right - it is so unfair. Just unbelievable how this could have happened to someone once so healthy. I am so lost for the right words to say.................

Although it's the last thing on earth you feel like doing, really try and celebrate his birthday. It might help lift his spirits - he must be feeling low too. Feel really 'impotent' and powerless. Want to make it better for you.

a handheld playstation???

LGJ Here.

...............you hold on bloody hard, it will happen.........have any of the Transplants been stopped because of Peter ???

No, because the donor hearts were not right, you hold hard to that thought. The match will come.

I think about you on a very regular basis.

Lots of love

LGJ

had an email from a bloke who has had his transplant, and i selfishly thought, 'its ok, you;ve had yours, your life is back on track'. have been in touch with this man and his family for well over a year now and know how bad it was for them, and even tho we knew it could happen, we didnt think it would happen now IYKWIM. wish we had done more earlier. Dh is making plans for the future, but i dont know if that future will exist.

if you ever mean to do something and dont get round to it, please gop and do it, cos you never know, we have had a shorter time than what we thought.

LGJ, 1st was stopped because of dh INR was too high. found out afterwards heart wasnt suitable.

Misdee, I can't begin to imagine the strain you are under and think you are very courageous in the way that you keep things together in the most difficult of circumstances.

Puff xx

BUt he has to make plans Misdee, because if he doesn't he is giving up.......

i know he does mieow, but at the same time i dont want to plan that far ahead. i cant plan anything atm, it doesnt feel right for dh to be saying 'next year we'll go on holiday, a proper holiday'.

Not fighting with you, honest, but you need PMA.

Lots of love

LGJ

Positive Mental Attitude, it takes a lot of energy, but Peter needs this from you at the moment.

much love.

LGJ

he doesnt see me like this. i wont let him.

I am so sorry to hear your dh is so poorly misdee. I am keeping my fingers crossed for him that the right heart will come very soon. I cannot think what you could get him for his birthday - would you be able to have a special meal or something delivered to the hospital? Does he feel like eating at all? Probably a daft suggestion but wanted to try and suggest something. Thinking of you both, mears.

Delighted to hear that.

Really, truly, not fighting with you.

Much love

LGJ

Misdee go along with it for him though - try and join in those discussions about the future. Don't write everything off - it's may well come good soon.

But why not Misdee? He could get stable next week and a new heart could come up next month, in a year he will be able to have a proper one....

I'm not being harsh babe but he has to have his dreams...

i cant actually get there on saturday, as dd1 has a birthday party to go to and dh has insisted she goes. his parents are holding the fort there on saturday.

the kids didnt get to bed till gone 10pm as we got back late from the hospital, so i dont know whether or not to send dd1 into school. she hasnt choosen dh a present yet and i know she wants to. i wont have time on saturday.

On the birthday thing - he will probably feel really made up with home made cards from the kids, and a birthday cake with candles (even though he may not feel up to eating it).

God,Misdee,I read most of your posts and am just astounded at your strength and grace and courage. You wouldn't be human if it didn't all occasionally feel too much.

You let it all out on here,darling. There are literally hundreds of sympathetic ears.

XXXX