I have another bunch of banding that needs done again this year. The last year has not been great health wise. Though tests and routine lab work have rarely if if ever shown any significant changes I’ve managed to go from no varicies to 15 last year and my Liver Specialist says the latest CT scan shows new and larger ones. My gastro health has been horrible and it seems I’m always right on the verge of being sick most of the time these days.
Has anyone else had experience with anything close to this. I am trying my best to understand how if nothing changes in lab work or sonograms why is so much actually changing in real life? My diet is pretty limited and I know I eat fewer things than ever before that might even possibly lead to a gastroparesis flare up … but nothing much changes. I just seem to be getting worse - it sure feels that way - and everyone keeps telling me nothing has changed with my liver cirrhosis but it darn sure feels like it has!
I know median life expectancy once gastro-esophageal varicies are diagnosed is 59 months - I’m at about month 18, had several rounds of banding done last year and it looks like several more are set to begin the first of May. I’m not scared of dying, it’s not my preference, but not a paralyzing fear. What I would like is some answers that make sense. I even drove 5 hours one way for a visit with my liver doc just to get platitudes and basically just saying what was thought would make me feel better. I know the whack a mole nature of banding (banding one can cause another to pop up) but why more and bigger when routine checks show little change? Does thing change my 59 month median life expectancy? I’m just frustrated and no one seems willing enough to be honest with me about what the heck is going on!
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Well, the inference is that your liver is getting stiffer which increases the portal vein pressure. Have the docs tracked your stiffness over time? Most docs are using CT and ultrasound, neither of which can measure stiffness. If you are increasing in stiffness you probably have not controlled the inflammation in your liver. Most patients face that as medicine has little help for us. FibroScan is the cheapest stiffness test. MRE is better but more expensive. The question of inflammation would best be answered by a Liver MultiScan. I was a fast progressor but didn't get to the high portal pressure you have. I credit that to the diet advice I got from my hepatologist for my recovery. The key was 1/4 cup a day of extra virgin olive oil. Can't guess if that might help you but here is a link.
Wayne my friend you have always steered me right. I started out on the fatty liver foundation.org that you started years ago. Since 2015 I think. It has been a wild ride yet what good health I have is pretty much all thanks to your guidance, help and suggestions. I have no idea where you get you energy - must be one heck of a strong cup of black coffee - but I am truly grateful you have it.
I would seriously like to see what I can do to help re: the portal hypertension link. In the past I’ve been hesitant to share much of anything other than here. The clock is ticking and I think I need to crawl out from under that comfortable rock I’ve been hiding under.
Thanks again for everything my friend AND the great information.
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