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How long might I have until transplant is necessary?
Dear Dr. Chung,
I would like to thank both of you for providing this valuable service. I am in Canada. I have hepatitisC with an enlarged speen, thrombocytopenia, gastresophegeal varices, many of which have been banded off. I had fluid that had moved into my left lung from my abdomen drained about a year ago, and have intermittent abdominal, facial and ankle swelling. I have cirrhosis, portal vein hypertension, sleeping problems, particularly insomnia and reversal of day/night sleep pattern (can only sleep during the day), mood swings (mild and intermittent), weakness and fatigue, loss of enthusiasm and motivation, and menstrual spotting throughout the month (which may be age related -I am 47). The newest symptom is dizziness and vertigo with mild nausea and some cognitive impairment, such as inability to think and write as clearly as I usually do, and inability to walk properly without stumbling into things.
I saw my internist yeasterday; he says that I do not have encephalopathy and that my liver is not 'decompensated'; I have been evaluated (last year) for a transplant and the decision was made not to place me on the list since I am apparently "too healthy". I have had a liver biopsy, and one very serious esophogeal bleed - I nearly died and was in intensive care for a few days.
My questions: How can I have all this going on and still have nearly normal liver ensymes and only a mildly low platelet count, and be considered as "healthy"? How ill am I exactly? On my last visit a few days ago, my internist considered me so stable that he said he did not need to see me for a year, and so I made several important decisions based on that information, including relinquishing my disabilty pension, registering a business and putting my house on the market in orderto move to a different city. Then the dizziness and vertigo suddenly began one evening and this gives me cause for concern. Perhaps I ought not to have made these important decisions. I take nadolol, 40mg 1x daily, midamor, 5mg 2x daily, and furosemide 40 mg x1 daily. I also take St Johns wort 3x daily, and lactulose when my blood ammonia level raises. Am I having symptoms of encephalopathy? I dont know my viral load or anything else, since this has never been discussed with me.
I don't know when or how I was infected. I have never smoked, have not consumed alcohol since 1996, and no not use any non-prescription drugs. I take excellent care of my body via nutrition, but have become sedentary over the last years.
How long might I have until transplant is necessary?
  Dr Chung Writes-  
You likely do have some degree of encephalopathy based on the symptoms you are describing, and Lactulose therapy appears to be warranted. however, it may not eliminate all of your symptoms. i am not aware of the listing criteria in Canada, but in the US, priority on the liver transplant list is based on Bilirubin, prothrombin time (clotting factor), and creatinine (kidney function). you appear to be sick enough to be listed. however, if you still have a long wait ahead of you, then another option available in many centers is living donor liver transplant. you may wish to explore these with your doctors.
  Dr. Chung      
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