Emotions...

Is it a bad thing that I often think about the possibility of dying? My husband B never wants to talk about it. And I can't blame him really. If the roles were reversed I would be acting the same as him. But I find myself wanting to tie up any and all loose ends... "just in case". I want to write letters to loved ones or even make videos for them. Especially for B and Z. Heck if I died, Z would not remember me at all. And that is a sad thing. People get uncomfortable when I talk about the fact that it is possible I may die when I go through my transplant. I know there not going to agree with me, but I guess I just want everyone to know that it's a pretty serious thing. People look at me and I look healthy. Im not underweight, Im not weak andunable to take care of myself. I still like to go hang out with my friends and even dance now and then! So when people hear Im sick I feel they often think that I simply need to take medicine or maybe that I need a small operation. I always tell people that I honestly don't feel I'm going to die, and truly I DO feel everything will be fine. But when your put in the situation if you don't think about every possible outcome I don't think your preparing well enough.

Ever since getting my transplant date I find that I don't want to talk to people. I dont want to go out. I don't leave the house. It's almost like Im depressed. But I should want to go out now because I'm going to be stuck in a hospital room soon enough. But I can't get outta that rut that tells me to grab my son, and crawl into bed and stay there.

I get excited, and scared, and nervous, and hopeful, and sad all in the same hour. I cry for no reason, then I cry for many reasons. No one seems to be able to make me feel better. And I don't expect them to. But I hate this person. I don't recognize her. And she is getting really tired of being strong. But the months ahead is where Im really going to need that strength.

The means to an end?

Well Tuesday I got the call. The transplant coordinator said that they are trying for a transplant date of October 3rd. I would be admitted probably somewhere around September 27th to have all the chemo and such done before the actual transplant. I am both excited and nervous. This is what I've been waiting for, it's what I need to potentially be done with PNH! Granted it will most likely bring along it's own problems, but hopefuly they will be less threatening than the blood clots I have been having. I go in on Aug. 30th to have a pulmonary function test, EEG, EKG, Cat scans, xrays and blood work. They have to see that I'm healthy enough to have the transplant. Then September 10th I will meet with the Doc and go over my results and by then know the exact dates. I am trying to get everything situated. The bills, Z's therepy schedule (my mother is going to be watching him), Make some dinners and freeze them for B to have while Im gone for the 6- 8 weeks. I am printing out tons of pictures of my little man and the rest of my family to bring with me so I can at least look at pictures of my family while Im there. I will keep you all posted.