October 18, 2013

Friday Five: 5 questions I get asked about my liver disease.

When people find out that I have a liver disease and I am on the liver transplant list the questions start rolling in.  Here are a few of the more common ones that people ask.

How did you get it?  
My Budd Chiari Syndrome was most likely caused by a hereditary blood disorder that I did not know I had. It causes my blood to clot easily.  It just so happened that the clots formed in my liver. There is a chance that I have had Budd Chiari since before I was pregnant with Anthony.  My father was tested and he too had the blood disorder (Prothrombin Gene Mutation G20210A). My siblings have a 50% chance of having it.  As do my boys.

Can't your liver just heal itself?
Yes the liver is the one organ that can regenerate itself.  When someone donates a part of their liver to another person, it will regenerate given time to heal itself.  For me, there is no break from the damage being done.  Scar tissue is building up and my liver is not able to reverse that damage.  

Are you scared? 
Hell yeah!  Plain and simple.  Being told that I could go from feeling great to a coma in a matter of hours has put a fog of fear over me. Honestly, not a day goes by that I don't think about it.  Every sharp pain or cold has me worried.  But I do my best to push aside the fear and I choose to live each day the best I can.  In the beginning, I was more afraid.  Add a high risk pregnancy and 5 doctors, yeah, I was a hot mess.  When he was born healthy, I was less afraid.  Now, I am able to deal with the fear so much better.  I know more and am more in tune with my body.  I'm not as afraid now, but its always gonna be there.

What is the cure?  
The only "cure" for Budd Chiari Syndrome is a liver transplant.  For me a living donor is not an option.  So I will have to wait for a cadaver donor.

How long until you can have a transplant?  
I have been on the Transplant list for over three years now.  And I have been pretty stable so unless something happens my guess is that its going to be a while.  My doctors have told me that as my liver weakens my other organs will be stressed.  And that eventually one of them will start to fail as well.  There is no way to tell if it will be my heart or kidneys, but that is their guess.  My MELD score has been in the 16- 19 range for the last year. With the highest score being a 40 and  the huge shortage of registered organ donors, who knows how long it will be.

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