Back to the bottom

I'm coming up on my 1 year mark on the transplant list.  From the outside it seems like it was a breeze.  But on the inside I can feel the storm brewing.  I know this is just the calm before the storm.  Like back in FL when we knew there was a hurricane coming and everyone was at the store getting all their supplies.  Every one was smiling and playing nice, but if you looked closer you could see the fear in their eyes.  I put on my happy face.  I do what I have to do.  I live my life.  All while one little thing could turn it all upside down.

I had my hematologist appointment last week.  My INR is at a record low of 1.2.  And that's after a few days of being back on 10mg.  So now I am back up to my highest dose of 12 mg alternating with 10mg.  Hopefully this will help bring it up. The low INR makes my low MELD score make sense.  Right according to OPTN its <10, so I'm back to the bottom of the totem pole.  Not the greatest news, but I know it could be worse.

I kind of like it down here.  After all, I should be happy to not be so sick...right?  I am still "stable"  and all my other organs are doing good too.  I am so blessed to have this time with my family. I'm alive and living at home as comfortably as I can.  Sure beats being in the hospital.  Each day praying the Drs find my perfect liver.  But I also know that someday that will be me.  And I am so afraid of that day.  So for now I am just going to smile and be thankful for the health I have today. Today I am alive and that is worth celebrating. 

Here is to living life. Tonight hug your family and freinds.  Tell them that you love them and how much they mean to you.  Because tomorrow isnt promised. Life is a gift.  Live it then give it!

Read More

Getting Settled

I know its been a while since anyone has heard from me.  There just seems like no time to write.  No time to tweet or play on Facebook.  My life has been taken over by moving and cleaning and unpacking and organizing.  Ugh.  Yesterday I took a half day.  Spent the morning, playing and then freaked out that I didnt do anything that night.  Like when I say im not tired only to wake up wanting more sleep.  Why do I torture myself!

But things are slowly looking up.  The house is coming together.  We still have a boatload of things at the other house, but we are getting there.  The boys are enjoying the new place.  Alex has been sleeping like crazy and Anthony seems to be less frustrated.  Just seeing their smiles and hearing them laugh makes me feel better.  This was the right choice for our family! 

I am a little bummed that I didnt get a chance to be on here much this month.  After all it is Donate Life month and there are so information to share with you.  There is always more to learn about and more to share.  I cant belive its already the 27th!

Hopefully things will slow down around here and I will have a little more time on here.  Ofcourse my computer broke so Im stuck using the laptop.  Which means no photoshop....boring!  I have a ton of pics to share with you all too!  We have a Swallows nest in our backyard with 5 day old chicks in it!  Ugliest Cutest things ever!

Read More

Mr Music

Published with Blogger-droid v1.6.8

Read More

Do I look like I need a liver?

Yes, today is April 1st. Or as many call it April Fools Day. But for me and around 110,000 others today is something else. Something bigger than jokes and pranks. Something very close to our hearts. Or in my case Liver. Yes, today is April 1st. The first day of Donate Life Month!

If you were only a stranger, passing me on the street or in the store. Or if you were a telemarketer or hell, a bill collector, they call me all the time. You would never guess that I am on the Liver Transplant list. Most people when I tell them have the same come back. “But you look fine” And yes its true, I am still able to function on my own. I am not lying in a hospital bed with tubes everywhere. I am not in a wheelchair. I still smile. I take care of my kids. I laugh and love just like anyone else. For the most part.

But on the inside I am not fine.  My liver is swollen with blood.  It hurts.  It doesn't filter out the toxins in my blood so they travel to my brain leaving me confused and unable to concentrate.  Slowly I am getting sicker and sicker.  I live each day as its the last.  Praying that my family knows just how much they mean to me.  And and that my children don't forget me or how much I loved them.  Each night I give hugs and kisses.  I always say I love you when hanging up the phone.  I remember the good times and I forget the bad...

There is nothing else I can do.  But there is something you can do.  Please take a few minuets to stop by the Donate Life website and register to be an organ donor.  Ask your friends and family to do the same. 

So what is someone on the transplant list supposed to look like? Like me :-)

Read More