The most common symptoms of Budd Chiari Syndrome are pain in the right upper abdomen, enlarged liver and an enlarged spleen. All of which I do have. There are also ascites and jaundice which I have not had yet. And then there is Hepatic Encephalopathy, which has been my biggest symptom and struggle.
When I was diagnosed I was clearly pregnant. So when the doctor asked me if I had had any pain or swelling, I pointed at my belly and shrugged. I did start showing a lot earlier, and higher but I thought it was all pregnancy related. Never in my life was I thinking it could be liver disease.
Many patients who are diagnosed with Budd Chiari Syndrome have an underlying blood disorder that increases the chances of clots. Shortly after I was diagnosed I started seeing a hematologist who diagnosed me with Factor II. My father was tested as well and it turns out I had inherited the mutation from him. My younger sister has it also.
There is no magic pill to treat Budd Chiari Syndrome. Ascites can be kept under control with a low sodium diet. Blood thinners have helped keep more clots from forming and have allowed some of my blockages to dissolve. Some patients will get a shunt placed to reroute blood flow, but thankfully I had a slower (chronic) onset and have those collateral veins helping me out. I do take medication to treat my Hepatic Encephalopathy. But there isn’t a medication to treat the Budd Chiari itself. The only “cure” is a complete liver transplant. I was placed on the UNOS liver transplant waitlist in 2010. I am still listed. Still here. Waiting.
That’s the hardest part. Something a lot of people don’t know about organ transplants is that you don’t just get put on a list and in a few days it is ready. For some patients, sicker patients, it does work that way. But for so many others, we wait. What are we waiting for? There just aren’t enough registered organ donors so we are waiting to move up the list. And to do that, we must get sicker. Something as simple as the flu could bring me to my knees. Or one of my other organs will fail. Not sure which is better. Most days that is a hard pill to swallow but it’s my reality. And I try to remind myself that if I am not sick enough for a transplant that means I am healthier than ever expected.