I'm not an MD but I've played one for the past 10+ years.
- •Diagnosed with Budd-Chiari in Oct 2005. Budd-Chiari is a blockage of the liver where blood does not drain through the portal vein.My GI doc at the time was like,"it's no big deal." I was gaining fluid without eating and he said, "I've seen worse."
- •I dumped that loser doc for a better one & new doc saw me in the emergency department on 11/4/05 & admitted me for surgery on 11/4/05.He gave me 3 choices: do nothing & hope medication can clear blockage to liver before I die, have a procedure where they insert a balloon in my liver to create a channel for blood to drain, or wait for a liver transplant and again hope I get one before I die. Not really a choice so I took the balloon aka TIPS procedure.
- •After TIPS my body reacted poorly and blood didn't drain quickly from my liver. I was in ICU for 7 days.Later, I realized I almost died.
- •Surgeons did a liver biopsy as well as bone marrow biopsy and found I have a mutated JAK2 inhibitor - which means my bone marrow produces too much iron and that can lead to clottingThis is called polycythemia vera (PCV) & is commonly seen in older men. If they had discovered this before my liver clot, I would simply need regular phlebotomy to address it. Instead, I take a daily dose of warfarin & a proton pump inhibitor - due to run off from liver that spills in stomach. Luckily no liver cancer!
- •Another thing about PCV is it causes the spleen to grow extremely large.Mine, at over 3X normal size, caused me to be unable to eat because spleen crowded my stomach. I lost 60 lbs. in a year & had to force myself to eat / drink things with high protein but in small sizes. I drank a high protein, small fluid ounce shake 3x daily (30g protein, 11 fluid ounces).
- •Was referred to an oncologist who specialized in PCV & he prescribed a JAK-2 medication that helped shrink my spleen - it's only ~ 2x normal size, now.With this, I can eat again and pretty much whatever I want.
- •A liver transplant would be curative. But, I won't qualify because of my PCV.
- •A bone marrow transplant (BMT) would've curative but I won't qualify because of my liver.
- •I'm constantly worried about my PCV & liver. At some point, my marrow might stop making red blood cells all together. At some point, I'll need another TIPS procedure.
- •Since I can eat, I've gained some weight above where I was. Also my BP is risingOh great, another thing about which to worry.
- •It's quite a pickle.Mmm, pickles