May 24, 2011

One Year

One year has passed.  One year I have waited.  One year.  I have been on the UNOS transplant list for a whole year.  Really?  I cant believe it. Emotions are over flowing. My mind is running a hundred "what ifs"  and "whens".  Its hard to explain really.


The hardest part about this journey is the not knowing.  I have been stable the whole time.  Never any major setbacks.  Like clockwork. I get my MRI and ultrasounds.  I have my yearly endoscopies.  And while Portal Hypertension and ascites have been brought up, they have not had to be addressed just yet.  I mix and drink my morning meds and every night my alarm goes of and I take the rest of them.  All pretty stable.  But.  I never know what tomorrow will bring.  If there will be a tomorrow.

Every few months, Anthony brings a bug home from school.  Starts with a cough, then fever joins.  Then Alex gets it...then David.  I must have a very good guardian angle, because every time, it passes on me.  I may get a sore throat, but never anything more.  Knock on wood.  But something as simple as a cold, could bring me down.  I was told to report any fever over 100.  See with my liver failing to do its job and filtering out all the toxins and other bad stuff, something so simple could turn in to something much bigger.  Every time I get a stronger pain, I wonder if time is running out.  When I look in the mirror at my bloodshot tired eyes, I pray for no yellow.  I dream about getting sick. I can feel my body getting sick.  But still they say I'm stable.

 I feel grateful to have made it this far so well.  I feel sad for all the people who have waited longer.  I am relieved to hear stories about friends who are doing great after their transplants and my heart aches for the few that are still sick after theirs.  I feel guilty for being listed when there are others who so desperately need help.  Somedays I feel like I could conquer the world and other days I wonder why me.  I'm frustrated that there is such a shortage of donors and I'm  embarrassed that I never though much of it until I needed one.

What have I learned from waiting?  I have learned that I need to put myself first.  If taking my medication makes me sick to my stomach, the I will have to schedule my appointments for later in the day when the effects have passed.  I am learning to say no.  I am trying to not be so hard on myself for not being able to do things I used to be able to do.  Ive learned to trust my instincts and to know my body better.  Its not easy, but there is no other choice.  This is my life.  And its not going to get any easier.  Ive learned to accept that, even if it took a whole year.

Who knows how much longer the wait will be.  But Ill be here, waiting.  However long it takes.  Fighting.  Living.


There are 111,344 people waiting for a life saving transplant as of today 12:14am tonight.  Are you a donor?  90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor. Stop by Donate Life America and register in your state!  And if you do, let me know.  One of my year goals is to get 5 people to register and I need 4 more :)  
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