decision made

Well I have formally told the transplant team that I do not wish to continue, they have told me that the door is always open if I change my mind. 

I told my kids my decision and they accepted it well enough and I was able to spend 10 days with my son (he lives on the other side of the country) I hope I'm still around this summer when he comes back to get the rest of his stuff from storage. I'm keeping it as a goal.

I am now on 12.5 lpm of oxygen with an E tank in a walker to move around, life has certainly slowed down. I have palliative care everyday now. It's very awkward the first time someone else gives you a shower LOL I have gotten over any inhabitions I might have had and I'm greatful that people have it their hearts to do this kind of work. I have a couple of really good ones right now.

It's a weird situation.....I'm slowly dying but there is no one to ask about it or how it feels, because everyone that could tell me has already died. I've gotten very weal and shaky this last week and it's a bit scary. They keep telling me that they will let me know when its time for hospice....I don't want to move a hospital bed into the house and all that. I'd like Tom to have a quiet spot to get away to when he can, its got to be hard to watch this happen. This is certainly not the life we were ready for especially at this age.

I feel like I am disconnecting sometimes and then I get mad at myself....I should want to be with everyone as much as I can while I can, but it is tiring physically and emotionally.

and that's where I am going to leave this