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 …
1. did u adopt a dog?? Im a big animal fan. They give tons of love and dont ask for much. more love in my cats little what 3 oz brain than most men Ive dated. Sad. (theres a bad lot out there w little morals)
2. Sounds like u r doing v well! All blk #’s…whats to be patient about? sounds great.
3. As for the tests, maybe there will be a day that it will be like the diabetes pens that are out there.
4. No one wants anyone full time anyway these days. So, if u work p/t, I think u will be that one in six. BTW, that figure seems so low for compatible transplants (which I would think would be the only kind they do).
Ur doing better than me. Ive been scratching to get out of this giant hole for FIVE YEARS. Talk about patience? I see no progress. I wish Id even have a few good things to report ….Id settle for even one positive change. It just keeps getting worse.
So, things could be a lot rougher! Ur at least showing progress. I think Ive hit quicksand. Jean
today use the computer to reply to a blog post that you read. Probably ate food and probably had shoes on your feet. You’re alive. It’s not a bad day after all.
I agree! as human beings it doesn’t seem to be in our DNA…LOL..But I believe your well on your way…Sometimes when we’re forced to take it slow, we actually appreciate God’s wonderful creation. I’m glad your feeling better, many, many blessings to you…Robin
Patience is a learned skill my friend.. and most of us don’t learn it very well. (me included) We are part of the “NOW” generation.. instant gratification is the name of the game. It’s how we became dependent on credit cards and houses we can’t afford… So, I will give you the best advice a teacher in college once gave to me.. If you don’t get it, be PATIENT WITH YOURSELF. It will come in time.. On that note I am sending you positive thoughts, hugs and all the love your heart can hold.. 😉