Needing more support, info on macronodular cirrhosis of the liver

Posted by jjw16 @jjw16, Apr 18 8:10am

Hi everyone I've been living with liver disease for 10+ years the specialists still don't fully understand what's caused the disease/condition.
I've got Enlarged liver and spleen
Vascular liver disease
Macronodular cirrhosis of the liver
Hyperplasia and feeling so alone at the moment, does they dont know much on it and there's no treatment for it. Before any one judges I don't drink alcohol at all last time I touch it was when I was 18.

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craigcraig | @craigcraig | Apr 18 10:04am

Hey. No one judges folks here. I too was not a big drinker , hardly at all, since college but my liver was totally shot with cirrhosis , bad enzymes, holes in my liver etc not even counting my liver cancer. Very lucky for me had a transplant at Mayo. So sorry about your issues and it must be scary they have not pinpointed the cause. I would never dream of trying to make a diagnosis or suggest a treatment myself. But hoping you are having or can get Mayo to look at it as if anyone can find the issue they can. Very best of luck.

Colleen Young, Connect Director | @colleenyoung | Apr 18 2:42pm

@jjw16, welcome. I can imagine you feel very alone. Sometimes, it isn't possible to know what causes some conditions.

I agree with @craigcraig that your next step might be to seek a second opinion at a large academic medical center, like Mayo Clinic. Are you currently in the cancer of liver specialists at a large medical facility?

jjw16 | @jjw16 | Apr 18 3:19pm

@colleenyoung I was under a care of a head specialist at a hospital in the Hepatology clinic but only just went and seeked opinion from another specialist at a different hospital and Hepatology clinic.