Lonely

In my searches for information on liver disease, I stumbled across lots of little bits and pieces of information. I also found a few blogs by either people with liver disease, or by family of those living with liver disease.

Erin & Geoff are married with 2 young children; Geoff has already had a liver transplant and was well on the road to a new one when he started improving to the point where the American health system took him off the transplant list. Geoff doesn't sound too similar to my father - but it's really nice to read what Erin has to say and sometimes reasonate.

It's such a lonely place to be here. There is not a whole lot of knowledge out there in the community about A. Liver disease or B. Organ donation. That is a whole other post in itself; but when you talk to people about it, it's either 'smile and nod' responses or really interested ones. One of the things I have learnt on this journey are who my real friends are.

I don't say that bitterly - on the contrary, I am glad for the opportunity. I also do not blame (?) those who don't fall on the right side of the fence; I just literally now, know who I can rely on. It must be hard having a friend be so wrapped up in her own world - and again, I don't say that bitterly because I am wrapped up in my own world.

Another big problem is that Dad changes with such speed, that it's hard to keep people in the loop sometimes. In one day we went from him having lunch and feeling 'better than he has in ages' - to ICU and 'better call the family in'. Are we meant to call people at 2pm and say 'oh, he's wonderful' - and then at 7pm and tell them he's dying? I don't know what the ettiquite is there.

As of today, he's well. A bit down in the dumps, and leaking like a tap from where he was drained; but he's here, he's lucid and he can walk a little.

The problem with being so weak too is muscle wastage. He spends so much time in a chair or in a bed, that his muscles seize up and he finds it difficult to walk. But the more he walks, the better off he is.

It's just hard all round really