[leeslay]

Its been awhile since I've been on. I found out in July that yes it is PNH, AA and my chromosome 12 has a 3rd string. My Dr says that this is very rare. He wanted to put me on some more "experimental" medication, but after two rounds on the ATG I said no thanks what are my other options. The only one is a BMT. I am scheduled to do this around the end of October. I was ok with it at first - finally a cure!!! Now I am terrified and just want to cry all the time. I keep getting information about the treatment procedures and it scares me. I am trying to be strong and not completely lose it in front of my family. I know I wanted this but now I am having second thoughts. We have to have it done about 75 miles away which means after release from the hospital I will be stuck there for 2-3 months after. I have to have an adult with me 24/7, my husband has to work - he's been laid off for months and we finally got something. One daughter is 18, working and going to college and I will not let her drop out to stay up with me. My other daughter is 12 and is trying to understand whats going on but I can't tell her details because I can't look into her eyes and see her scared. I know that everyone who has a BMT goes through these feelings. They have no PNH support groups where I live to talk to anyone about how i am feeling. I have been just trying to stay really busy so I don't think about it. Then I will talk to my parents and lose it all over again. I just needed to get this out, I felt like I was going to blow up. Thanks for listening.