Hi, I have some answers.
I saw my GP today. He said I have no reticulocytes and that I am not producing my own blood (red cells) and am wholly dependant on transfusions. This is why my post transfusion Hb was so low.
He said that I'm dying and probably don't have much longer to live unless I have copper infusions and try to tolerate the side effects. He said I need to discuss my condition with my family and make a decision soon.
I know logically that I am sick but the dying thing feels like its not real and it's happening to someone else.
I dread raising the subject with my family, it all seems too hard to discuss. I've had theoretical talks in the past but those talks just left me confused about how my family felt. On the one hand they think its everyone's right to choose for themselves but on the other hand they get upset if they think there is a treatment option that I don't try.
As for myself, I don't want to die but I don't want copper infusions........tough luck for me, suck it up and do what I need to do. It's a hard decision but at least I have a choice, that's more than a lot of other people have.
Now I know I have a GP who is totally frank and honest. That's refreshing.