Saturday day was awesome. For the first time since I can remember I felt 98% normal. I felt like I was not one of the .000017% percent of Americans receiving a liver transplant this year. I felt like Pinochio after his strings were cut and he exclaimed, “I’m a real boy!”Sunday morning, I felt like garbage with weird little jabs in my abdomen making me wince. My belly was in rebellion. I know it is totally normal and I know I just had my transplant 14 weeks ago but I’m having a tough time being patient.
Have you ever had someone tell you to be patient? Did it help at all? I mean, did you suddenly say, “Oh yeah, I just need to be patient” and have a wave of patience sweep you away? No? Me neither. It would be nice if it worked that way.
They told me before transplant that my life would never be the same. I heard it but did not really comprehend. Now I am starting to wonder just what that means. My liver friends tell me it is different for everyone.
Statistically, I have read, only 1 in 6 liver recipients return to fulltime work. I do not accept that statistic. I will be that 1. Right now I just have to accept the fact that it won’t be soon. It’s hard.
One of the hardest things is when people think everything is back to normal. They don’t see the exhaustion, the naps that hit instantly or the nausea. They don’t have to go to the blood lab regularly to have 5-7 vials drawn so liver numbers can be checked. They don’t understand the stress that comes while a transplant recipient waits to get the report. Do you ever care to know what your AST and LST numbers are? Biliruben? I never did. Do you know what EGD, ERCP mean? Pleural effusion? Paracentesis? Liver patients do.
My Prograf level is 7.5. That’s transplant jargon. It’s perfect, by the way. It’s a happy number. In fact, at my last appointment, all my numbers in the column were black except for one. My doc pointed to the only red one and told me I am making too much protein. That, he said, is a good thing for me right now because it means I am rebuilding muscle.
This morning, other than little stinging pains along my incision which mean that the nerves are growing back, I feel pretty good again. My little puppy, Pompom and I walked almost 2 miles before breakfast. What will tomorrow hold? Only God knows.
Have patience. If I could just figure out how to do that …