October 1, 2013

Updated MELD score

IMG_20130930_101414.I have received others like it.  This letter.  It didn't matter though! When I saw it in between some other envelopes, my heart still stopped. Now that I look back, it is silly that I got so worried.  I tucked it into my purse and it took days before I could get the courage to open it.  I don't even know why I was so afraid.  It just looked scary.  And it was light.  Most letters I get from them are pages full of orders for my upcoming tests and appointments.  But one little page... I panicked.  Want to know what it was?  Orders for labs so that I could take it to the lab closer to home and would not have to go down to the Transplant Clinic.  Yup I was afraid of nothing!  Seriously.  What was I thinking?  Well actually I was worried they were going to tell me I was off the transplant list.  Or that there was something else wrong.  What can I say.  I'm a worrier.

So I got my labs done.  And the best part was, that I went ahead and had labs drawn for my other doctors as well.  No sense in getting poked again in a few days right!  After a few days of waiting, I got the call that I was waiting for.  No, not "the call"  But my nurses calling me back with results!  My MELD score is 19.

What does that mean for me?  Not much.  My levels are all pretty much the same.  They have all went up only slightly.  Now its more waiting.  I remember hating this part.  Feeling let down that my score wasn't going up. These days I am feeling even worse than I did back then but I have learned to be thankful for the health that I do have.  For me that means more time with my family and out of hospitals.  I am blessed to have made it this many years as healthy as I am. 5 years I have been fighting and I don't plan on stopping now.

We all know that sooner or later something has to give.  The pain is getting sharper and it lasts longer.  My fatigue is only getting worse.  And my mind is slowly slipping.  Yes, it makes me angry.  Yes, I have days where I just want to give up and get depressed.  Mostly I worry about how its going to affect my family. Eventually the day will come where I can't do the things I have managed to do this far.  I've had more bad days in the past few months that I had all year last year.  My feet swell while I am cooking dinner and I forget what I am doing.  My hands flap and cramp when I play cars with my son.  And I can't type with out taking many breaks.  Not just because of my hands but because my mind just wipes it self clean every few minutes and I have to re read what I am writing about.  I find myself  spending less and less time on the computer and my phone.  Crazy I know!  Even holding a book and trying to focus on what I am reading is exhausting.  I spend every minuet reminding myself where my boys are and what they are doing.  I constantly second guess myself and beat myself up over my mistakes.  But at the end of the day and more so with the start of every morning, I thank God for every day I am given here at home with my family!

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