Hello! I found your blog by chance, but I have PNH also and am 28 weeks pregnant. Our situations are pretty different, but I've had it for going on 4 years this year and have been on Soliris that long. With the support of my doctors, we decided to get pregnant. I do believe Soliris is the hope for us to be able to do so! So glad that things are going well for you and your sweet little family.
Hi! Glad you found my blog. There is hope, indeed. And Soliris is a wonderful drug, it has saved me. Are you eventually getting a BMT? Just wanted to share with you that your baby's blood cord could also be checked if it matches yours and if it does, you can use it for a BMT. My husband and I stored our baby's blood cord. Even though I didn't get to use it, because I have an unrelated match, it's best to store the blood cord in case your baby needs it later on. Talk to your doctor about it. Be blessed!!
Hello! I found your blog by chance, but I have PNH also and am 28 weeks pregnant. Our situations are pretty different, but I've had it for going on 4 years this year and have been on Soliris that long. With the support of my doctors, we decided to get pregnant. I do believe Soliris is the hope for us to be able to do so! So glad that things are going well for you and your sweet little family.
ReplyDeleteHi! Glad you found my blog. There is hope, indeed. And Soliris is a wonderful drug, it has saved me. Are you eventually getting a BMT? Just wanted to share with you that your baby's blood cord could also be checked if it matches yours and if it does, you can use it for a BMT. My husband and I stored our baby's blood cord. Even though I didn't get to use it, because I have an unrelated match, it's best to store the blood cord in case your baby needs it later on. Talk to your doctor about it. Be blessed!!
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