2 months and 10 days

Did you know I’ve been on the UNOS Region 10 A-positive (blood type) waiting list for 71 days now?  

At first the doctors said “We’ll have you transplanted in 2-3 months.  Quit school.  Don’t work.”  I panicked; I’d be behind.  I need an income, plus I love my kids.  And how was I going to be emotionally ready for this huge life transition in only a matter of weeks?  Then I packed and read “The Binder.” (The overstuffed Liver Transplant binder the Clinic compiles and makes you read every word of)  I dealt.  I joined our local TRIO, a support group.  I met friends online, even found a couple girls my age who had just had transplants and were now working as RNs – coincidentally just like I hope to be.  We got the tumor, and we don’t think the cancer spread.  The doctors say I have a poor quality of life so I need a new liver, they say I’ll have more energy than I know what to do with, but is that really possible?  It scares me a little.  This is all I know. I do the best I can and take each day at a time, as it comes, embracing it for the strength God gives me or the things I can find to do to keep busy.  

Now, 71 days l later, I am weak, bored out of my mind, and I am tired of filling my schedule with trivial things, shopping which gets me into trouble, and organization projects which I guess are good, and a Netflix membership to pacify this unbelievable boredom.  I have all the time in the world, yet lack the strength to do it.  I’m 23, I should be in the beginnings of a great new job, working on building a family, watching the dreams I’ve worked so hard to achieve, come true.

I don’t want to stir anything up, but I think kids and young adults needing organ transplants – if we ignored severity of disease and risk of not having a transplant – should get extra “points” just because everyone else is old enough to already have a life, to already have a career, to already be married with kids, and sure those things may seem to make the process harder, but they’ve lived their life.  They know if they achieved their dreams, they saw their hard work turn into a good life.  But us?  We’re only getting started.  We had to push pause on every hope and dream we were stoically fighting for, never really knowing if we’d ever get “there” or not, while the rest of you already know.  I’d rather go through this with a husband and a family and a career than not knowing if I’ll ever have those things.  And of course both options are stressful.  But right now I’m having a hard time with things.  Not knowing if I’ll be able to go back to school in the spring.  Not knowing if I should take these nursing textbooks to the basement or if I’ll need them soon.  Not knowing if I’ll get my surgery early enough to take a nanny job in both November and February that I’m really looking forward to.  Just not knowing … going from having a huge future at my fingertips to not knowing when I’ll even have a major life-changing surgery.  Will I get a phone call, the phone call in the middle of the night?  Or will it be during the day in November.  Will it be snowing outside?  Will it be that far from now??   

But you know what, if there’s anything I am, I’m a fighter.  Anyone who knows me knows that you might get a few meltdowns and tears, but underneath it all, I’ll fight for what I know is right with everything I have.

That said, I talked to my social worker on Monday and she said out of all the lists for all the organs and all the blood types, I am the smallest person registered, and therefore I need a small liver, which I’ve told you before.  The tumor rules out a living donor liver, so I’m stuck waiting for some precious individual – just my size – to die and give me their liver.  It’s morbid, but it’s how the process works.  I asked her, “Honestly, how often do you see these small livers?”  She explained that most of their liver patients aren’t that small in the first place, but she wouldn’t be surprised if it took up to a year for one to surface, although her hopes is that the little liver is here by the end of the year.  I liked 2-3 months better, but now it looks like I could be living in limbo a handful of extra months.  And that’s a lot of added stress, worrying, and unknown.  So 2011, tomorrow, we really don’t know.

And those asking about my MELD score – it’s 22 and will go to 25 in 2 weeks, but at this point, my MELD is irrelevant because I’m #3 on my blood type list, and #1-2 are Status 7’s which means they’re too sick to be transplanted right now anyways, and my social worker shared with me that they are completely different sizes than me, so there is no competition.  So basically, the first little liver in Region 10, barring another hospital taking it first, is going to be mine.  (This is where being at the largest volume transplant center comes in at my advantage.)  So, we just might have to wait a little longer than I thought.

Please join me and pray this liver comes soon.  My social worker is hoping for a “busy holiday weekend” on Labor Day since deaths on summer holidays skyrocket, but rather than pray for that (it’s a little too specific for me to pray for people to die on a certain date!) just pray the perfect liver gets to me soon.  Pray for peace in my heart and grace in the waiting.  The unknown, the day to day not knowing is getting so hard.

I love you all,
Amanda 

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