Tomorrow is the big day where I reach 100 days post transplant. In the summer we couldn't even get our heads around 100 days out as it seemed such a long ways away. But here we are. So what does it all mean? I think that is what I've been asking myself and I've come up with a few answers. The first good news is that I have been able to be home since September 14th and haven't had any infections.
By reaching this day, I have been able to slowly taper off the prednisone. I still have a couple of weeks before I am totally off of it. It means that sleep has gotten a little better. I still go in for weekly check ups. There have been hic hups along the way with blood counts and medicine levels. I still have some tough side effects from the immunosuppressant drugs that I'm on. I'm reminded weekly of the slow healing process and possible complications still ahead. But there is some encouraging news, too. I am getting out a little and can do more around the house. I have had some tests that show that my bone marrow now consists mostly of donor cells. My blood still needs to reflect that so it is a matter of patience and further healing. And I will be going in for more tests after Thanksgiving to mark the 100 days.
It would be nice if this could all be buttoned up and over with. But, we have come to understand that there are a great many variables in this process. Every week I am evaluated, and some things change. I am back on an infusion twice a day (added to the other two infusions) that I had been taken off of in October. So, I move forward with some things and then take a step or two back.
I enjoy my days and even though some days I'm on the couch more than other days, I enjoy the simplicity of my life. We are looking forward to having our children here next week. They are staying at other places, but just to see the grandchildren and have them around a little will bring me a lot of joy.
I'm still amazed at the generosity of those who express their concern and love for us. Everyone has been so good to us and we appreciate more than we can say how grateful we are for all that is said and given to us. Love to all, Kathy
