July 19, 2013

Friday 5: Me and Liver Disease

Liver Disease is a taboo subject to most people.  When I tell someone that I have a liver disease they usually think it is from drinking.  They they ask  if its from hepatitis.  No and nope.  When I tell them that I have Budd Chiari Syndrome they look at me like I am speaking Marshallese.  What is it?  How did I get it?  How to I cure it? Is there medication?  Here are 5 facts about me and Budd Chiari Syndrome!
  1. Budd Chiari Syndrome is a very rare liver disease caused by a blockage in the hepatic veins that carry blood out of the liver into the heart.  For me it was chronic.  Over time as my veins were being obstructed my body created a web of veins around the clots. 

  2. The most common cause of Budd Chiari Syndrome in the US is blood disorders.  This was the cause for me.  Shortly after diagnosis I also found out I had the Prothrombin Gene Mutation which makes my blood clot much easier than normal.  This was passed down to me from my father who tested positive after I was diagnosed.  My brothers and sisters as well as my boys have a 50% chance of carrying the gene as well.  But no one else has been tested yet.  

  3. I had no idea I was even sick.  My severely enlarged liver was discovered when I went in for an pregnancy ultrasound.  As my belly grew, the pain got worse and I was retaining a lot of water.  Now days, the pain comes and goes.  When its bad, its pretty bad.  The encephalopathy is what gets me.  The most common symptoms are ascites or fluid build up.  Pain in the upper right abdomen.  Nausea, weight loss (none of that here), vomiting blood, enlarged spleen and edema (swelling).  I've been able to hold off a lot of swelling with a low sodium diet thankfully because I don't need any help in the puffy department.

  4. There isn't an easy fix for this one.  The only way to "cure" it is with a liver transplant.  Until then, my body will work as hard as it can until it just cant anymore.  But eventually my other organs will fail.  This will bump me up on the transplant list and get me closer to my new life.  But for now, its a low sodium diet, exercise, blood thinners and other meds that keep me going.  

  5. What if.  What if I never knew.  It was by luck that I found out.  I had given up all hope of getting pregnant again.  So what if I never was diagnosed?  Well when I was diagnosed and all my problems with past pregnancies were discussed, my doctors all agree that I probably had the clots back when I was pregnant with Anthony 3 years prior.  What is the life expectancy of someone who is not treated? Three Years! I was hanging on my a thread and I had no clue. Long term survival following a successful complete liver transplant is between 69 and 87%.  I can handle that!
Every day I open my eyes I thank God for giving me the chance to enjoy one more day.  Life is a gift.  Don't take that for granted.  Love the people that love you.  Forget the ones that don't.  And if you haven't yet, register to be an organ donor at Donate Life America!  

1 comment :

  1. Wow Kimberly, I had not heard of this disease. I am so sorry for what you've gone through already, and will have to endure in the future. Sending prayers for your health and your family too. We are all organ donors here in our family...it's so important. My daughter's bf Mom just had a kidney + pancreas transplant and is doing so well. Blessings and take care!