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.

Take her out tomorrow to choose a present, one day out of school won't hurt.

i do go along with it, but it seems wrong to be making plans for next year, its not that far off. remember this time last year he was stable and we were actually living not surviving. we'd just been on holiday and found out i was expecting dd3. life was good. it seems so long ago now, like a different life, not ours.

I'm with Puff on that one.

You have my upmost respect, you are obviously an extremely strong person whos coping so well (even if you don't feel you are). My thoughts are with you and your family - stay strong!

My thoughts are with you Misdee. I have been following this with you. I so hope that the right heart will come along for your DH. I can't imagine what you are going through and I have a tremendous amount of respect for you. I wish I had more words of encouragement for you. Please take advantage of the support you receive here.

i see so many young adults on the transplant ward. it seems so wrong.

Misdee in a years time you will hopefully be looking back and thinking 'this time last year, pete was dying and now look at him!!'

i know mieow, but we could still be stuck in this horrible limbo, with dh permanatlky in hospital being supported by machines. the longer he has the wait the weaker he gets, ther less chance he has of coming out the other end. you've seen him mieow, u know how bad he looks, how thin he has gotton.

I know, but he is postive and you must stay the same...... like you said yesterday, his mum was ready to plan his funeral but you hover between full recovery (thats not going to happen without a heart now) and long term meds, keep thinking that.

i'll try. but sometimes it hard. listening to him explaining to dd1+2 what the line was for was so gut-wrenching. quite simply 'its medicine to mkae me feel better'. the kids have such faith in him, and even when he is at hospital they know he'll come home. just when is another matter.

The kids are used to this, this have been a part of their lives for many years now, its you that is finding this hard because you know what life is like without DCM.....

i know. dd1 was only 2 when dh was diagnosed. the others 2 wont know anything different. its seems so unfair on them. i know i tell people on here that he needs a heart transplant, but in RL its so much harder.

oh Misdee im sorry to here you and Peter are having a roung time and i pray that a suitable transplant will come along and he will well enough to take it we are all thinking of your family - xxxx

Was chatting to a mum at the school yesterday who i went to school with, and was saying that I had to pick up your DD1, and was saying how you need a lot of help when your DH is in hospital, and she remembers Pete from school and was shocked that someone our age could need a transplant, but its happened and this is youur life till he gets his transplant, and he will get it......... believe it babe.

he better do, as he has threatened to haunt us if he doesnt last long enough.

you mean you can't get rid of him then...
You have a fab. relationship because you both realised how much you mean to each other, and you both are very strong, Pete won't give up easily

well, i've just ordered him an ant farm, and a gyroball thingy to help build up his muscles in his arms and shoulders.

AN ANT FARM!!!!!! Pmsl

he will love it ant farm .

gotta make use of the little blighters somehow.

How do you catch the ants to put them in??

by not stamping on them?

no idea, i guess that will be my job.

do you get a little net???

Misdee, i find you incredibly wonderful and i am stunned by your posts. Nobody on here can ever appreciate what you are going through, you make my heart jump up a beat. I know online is a safe place and we don't actually ever know each other personally ,but i am proud i have a miilisecond of your life when you spend the time of explaining what is going on. i'm waffling.. but i adore your posts as they are never ever self sacrificing and about you, i hope to goodness you are appreciated by all around you and get plenty of hugs xxx

I'm Misdee's sister and even I can't appreciate what she is going through!

off to bed. hoping the kids sleep late. dd1 wont be gointg to school. MIL may tell me off, but i think she needs a normal day, weekend will be going to the hospital.