I'm not an MD but I've played one for the past 10+ years.
  1. 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."
  2. 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.
  3. 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.
  4. 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 clotting
    This 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!
  5. 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).
  6. 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.
  7. A liver transplant would be curative. But, I won't qualify because of my PCV.
  8. A bone marrow transplant (BMT) would've curative but I won't qualify because of my liver.
  9. 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.
  10. Since I can eat, I've gained some weight above where I was. Also my BP is rising
    Oh great, another thing about which to worry.
  11. It's quite a pickle.
    Mmm, pickles