March 15, 2010

Waiting

Its the hardest part of having this disease. Waiting. There is always a wait for test and lab work results. Then there is the hours I have spent waiting in Drs waiting rooms. I don't even mind waiting for a new liver. Just because I have this rare liver disease that is only treatable with a transplant, doesn't mean I am entitled to a new liver right this moment. My family and friends are always saying how horrible it is that I cant just get one now. But the truth is, I am not sick enough. You don't just go into a hospital and order a liver. There is no prescription for it.

There is a system used to decide who needs the new liver first. One liver does not fit all. Matches are made based on so many things. Who is in need most, who is able to undergo surgery, blood type and many other things. Many people have never herd of a MELD score.Its the Model for End-Stage Liver Disease. Scores range from 6 to 40. You can read more about MELD/PELD here

The waiting that I dread, the hardest part for me, is waiting to be sick enough, just to get on the list. And then waiting some more. I always keep hope that I wont ever get sick. That I will just go on living my life with constant check ups, but nothing more. But every week it seems I feel weaker and weaker. The pain gets worse and worse. And yet I know I am so far from that "point" of getting on the list. I try to look at is as a good thing. I mean if I am healthy enough to not be on the list what more can I ask for right? But then pops up that little devil on my shoulder reminding me that its most likely unavoidable. For now my Drs are calling me Stable. Everything seems to look unchanged as far as I know. So here I am...waiting.

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