I was diagnosed with Budd Chiari Syndrome and Prothrombin Gene Mutation (Factor II) in 2008. BCS is a liver disease where blood clots form in the hepatic veins blocking the flow of blood from the liver to the heart. 1 in 100,000. When the Budd Chiari was found so was my blood disorder that most likely caused the clots.
As the blood flow backs up into my liver and spleen it has become enlarged and causes damage. I have been very lucky to be able to have come this far and still be stable. No shunts as of yet. I have equal good and bad days. I have managed to avoid most of the symptoms and for that I am very blessed. My greatest struggle is the fatigue. With two young boys, there isn't a lot of time to be tired, so I have been doing my best to push myself when I need to and allow myself to rest as well.
I have MRIs done on a regular basis to check the progression of my liver as well as a yearly endoscopy. I visit my hematologist every two months and have labs drawn depending on my results. If all is good, I only have to go in once a month. If my numbers are off, it becomes a weekly thing. I am happy to report that I only see the Transplant team every 6 months now. And I have labs drawn to update my MELD score done every so often. That too depends on my results. The higher my score the more often I get my labs checked.
5 Things to know about Budd Chiari...
It is not something brought on my consuming alcohol.
There are more than 117,679 people waiting for organs.
The only "cure" for my Budd Chiari Syndrome is a complete liver transplant.
I will be on blood thinning medication for the rest of my life.
My boys have a 50% chance of inheriting my blood disorder.
Another thing I wanted to share was that April is Donate Life month! A month to share information and create awareness of something that saves so many lives. Maybe it has changed your life or the life of someone you love. Many of my friends are registered organ donors, but there are a few who are not. Are you an organ donor? How did you make the decision to be a donor? And how has donation affected your life? I love hearing others stories, so please feel free to share them with me!