|
Hi, Kamara. I am sorry to chime in late, but I've not been on here for a while. I was diagnosed with this disease during my pregnancy in March of 2014. I also needed weekly blood and platelet transfusions and I was induced at 37 weeks because they were delaying treatment until after pregnancy. They gave me about 2 months - initially my hemoglobin held, but the platelets never recovered. Then I started needing blood transfusions again. At that point I was evaluated for a transplant, but my only sibling was not a match. They decided on an ATG/cyclosporine and I had that treatment in November of 2014. My counts slowly but steadily improved. They are ok, not normal. Hemoglobin stays around 11, platelets topped out in the 160's but they fell back to the 120's. Now I'm off cyclosporine because it made me really terribly sick, and the platelets seem to be slowly falling. It's only been a few months, so they are just watching. I feel like I just wish I knew what to do and how to fix this.... But I just wanted you to know that you are not alone. It can be hard to go through this with a newborn and older children relying on you. This probably doesn't help, but if you have any questions, please ask. Good luck to you!
Tara
|