There is no smell more refreshing than that of a crisp, cool, fall rain! I am in heaven today. I am also feeling a little better. This past week my doctors have lowered my prograf (anti-rejection medication) level from 8 to 7 to 6 and finally yesterday at my UCSF appointment to 5mg 2x/day! Hopefully soon I will be able to get down even lower! The level of prograf in my blood (TAC level) is high and that can cause toxicity and sometimes rejection. That could explain why I have been feeling so bad the past two weeks. I hope the TAC level goes down quickly with the decrease in prograf.
I am hopeful that with the change of my one anti-rejection medication (changed from cell-cept to myfortic) and the decrease in my other anti-rejection med, prograf that I will soon be feeling better!
However, this week both Kelly and I have been experiencing extreme stomach muscle pain. I was doing fine with standing up straight but with this new pain, it is a little hard again.
My appointment yesterday went great. I absolutely love my doctors and my coordinator. Dr. Freise told me yesterday that it will take at least 3 months before I start to feel somewhat normal and others say it will be 6 months-1 year before I am really fully recovered. But, I have God, youth and will power on my side!
I also asked him why my scar changed colors, it looks a little worse (it is now more red than white). He says that it will go through changes and sometimes get better and worse. I think it might be because I stopped putting my aloe on… oops, I need to start that up again! Whew, you should see the difference in my two scars, one I used aloe vera on and the other I have not (the one on my leg where they removed a vein to try to fix my liver artery during the transplant). The leg scar is nasty looking (it’s not as easy to get to to put aloe vera on!). For those who are preparing for transplant surgery, I highly suggest getting Mannatech’s emprizone (aloe vera). It works miracles on scars and you can use from day 1 post op.
My labs have now been decreased to every other week and after Nov. 1st they will go down to once a month lab draws! Woohoo, less poking, praise GOD! My doctors also don’t want to see me for another month! More good news. They have also taken me off of one of my medications (an antibiotic). Slowly but surely… I am getting there.
Because I have lost so much weight (30 pounds), none of my clothes fit me. Yesterday, on our way home, my mom and I stopped in good old Pleasanton to go shopping. My sister, Kelly, met us. They went shopping without me because I have just been so fatigued and my stomach muscles hurt so bad. However, after an hour and a half nap and some pain killers… I was ready to shop! =D I got some MUCH needed clothes/shoes (ok only a few things because transplants are expensive but still). I don’t have any jeans that fit me… I still gotta work on that. I cant wait to get a job!! For now, I will enjoy my free time and the smell of this rain. I made myself a spiced latte and snuggled up in a blanket this morning enjoying the crisp cold, fresh rain smell and watching the birds fight over the worms!
Let the heavens be glad, and let the earth rejoice; let the sea roar, and all that fills it; let the field exult, and everything in it. Then shall all the trees of the forest sing for joy before the LORD! Psalm 96:11-12