scared of recent diagnosis outcome

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Hello folks, recently I was told quite bluntly that I had Cirrhosis of the liver, until then I was just told "you have a fatty liver" which did not really mean much to me at the time (lack of info) I had a fibroscan of the liver a year or so ago, then a more recent one showing scarring, which apparently can lead to liver cancer, I'm having blood tests next week and a Gastro app 17th November. In the meantime suddenly had swollen ankles, water retention, then fluid in my lungs, oh my god, am I drowning?? I now take 2 different water tablets, Spironolactone 25mg, and Furosemide 20mg, one of each per day. And I am scared to bloody death, excuse the language, I already have an existing lung condition called Bronchiectasis, so fluid build up surely is a worry? Sorry for rambling on, I wonder what to expect from the Gastro people? It's a 200 mile round trip for me to get there, so if there is relevant questions I need to ask please help, thank you. David.

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  • Posted

    Which country are you in David?
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    • Posted

      Okay, what to expect from the gastro. A full set of bloods, much more than a regular one that a GP does. Doesn't mean much more blood taken, just more tests run. Probably an abdominal ultrasound and then a gastroscopy (tube down the throat with camera) to check for oesophageal varices.

      Without knowing more, it is difficult to say more, so here are some more questions.

      How did we get here, through alcohol? Fatty liver, though a warning sign, is not major, but cirrhosis is and there is a stage in between called fibrosis which is the main warning sign. Why were you sent for fibrosis scans, they are usually for people where there are warning signs and need to be acted upon. I'm struggling to understand why you went from fatty liver to cirrhosis and no one seemed that bothered until it got to cirrhosis.

      If you are cirrhotic and have scarring, then yes, you are at a much higher risk on developing liver cancer nodules. At this stage you really need six monthly scans to pick anything up early, when it can be dealt with easily.

      Peripheral oedema (swollen ankles) is a sign of a cirrhotic liver and is almost guaranteed. Spironolactone is the face diuretic given and if that doesn't do the job, Furosemide is added. The chances are that if you have peripheral oedema, then you also have ascites - water retention in your stomach. Have you developed what you think is a beer belly, but quite distended? If so you will probably need a drain to remove the fluid. If this is the case, the build up of fluid around the stomach often compresses the internal organs and the lungs. By compressing the lungs it can make you wheezy and maybe aggravate your existing condition.

      To really answer any questions in more depth, I really need to know who you got there, alcohol, why no warnings, but why the tests (fibroscan) - if you were warned and ignored it, then say so, so I can understand, half the story does not help. And believe me, if you are not forearmed with info, don't expect the gastro to tell you much. The more you can prove you understand the situation, the more they are likely to be open, otherwise you will be told little and sent back to your GP for them to explain.

       

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