I know it's time for an update but have been waiting to feel better so I could give you all good news. Unfortunately the GVHD in my liver has not been cooperating. I received some information from Be The Match and it talked about the curves to expect at about the 6 month recovery period. So now I know it's normal to have a curve in the road.
My liver enzymes have gone down but my bilirubin has continued to rise. With that the itching I am experiencing is significant. In addition to the steroids I am on now (prednisone) ....are you ready for this? I am receiving treatment that is called Extracorporeal Photopheresis, here after know as ECP. The technology associated with this is mind boggling to me. A nurse in the ECP unit (at UofM) hooks me up to a machine. It takes about 5% of my blood, separating the red, white cells and plasma according to their weight. This happens with a centrifuge like process. When the cells have separated out the white blood cells are exposed to ultraviolet light. When this process is done the blood is given back to me. They have found ECP fights GVHD quite well. However it is not done overnight, it can be several weeks before improvement. I had 3 treatments last week and will have 2 treatments this week. The entire process takes about 2 hours. I am praying this helps sooner rather than later because I am extremely uncomfortable. Believe me whatever helps itching I have tried, oatmeal baths, baking soda paste on my skin, prescription drugs etc. It gives me some relief temporarily....all I can say is I hope babies don't experience this when they are jaundiced. Please pray that my bilirubin would start to come down.
Other than that, which is quite enough, I continue to do well and have kept healthy. I still see people at the BMT Clinic in really bad shape so I know I am fortunate to be as healthy as I am. However I know that my liver needs to heal, so am doing everything possible to make that happen.
Sorry I can't do better than that, I feel as though I am letting people down by not improving more rapidly. I will stay the course and pray that my liver heals.
On another note I have had a wonderful Mother's Day and I hope all of the Mamas out there have had the same. I love seeing your pics on Facebook. It seems like just last year you all were in High School and now many of you are the same age I was when I was coaching you! How time does pass quickly.
Please don't worry about me, if you ever think of me just say a prayer that I would heal. I will get through this. I haven't come this far to give up now! I keep thinking God must be keeping me around for some purpose and I pray this becomes clear to me, that I would be doing what He would have me do.
Blessings to each of you...Grace and Peace...Peggy
