This year I have a clearer picture of the state of my liver, as my husband was allowed in with me and he was able to read notes that I couldn't see whilst lying on my back being examined.
Liver is apparently slightly enlarged, but that has been written off as "expected" for someone with cirrhosis. On the screen I couldn't see any scarring, but I know that doesn't mean there isn't any - given that not all scarring is external. No ascites (but I already got that confirmed when I saw my consultant before Christmas - he's taken me off the Spironolactone because he's so happy with my continued stability) and nothing noticably abnormal beyond my liver being enlarged. I really did get fed up with people telling me I'm "fine" or even "cured" over the last 18 months, so I'm glad my husband was allowed in with me and could look at the screens and the notes that were being typed up. I actually know what the real state of things is now, as opposed to being constantly confused by different people.
So yes, I have a liver with cirrhosis - but it functions well enough that I have never redeveloped ascites, and I don't require a transplant. I've not had my blood results back yet, but I intend to call tomorrow (I had bloods done just before Christmas). At least nobody has felt the need to call me about them, so I'll just assume that no news is good news.
Hi. I have watched with interest and sympathy the questions and responses on this site for some time. Your situation seems most closely related to my own and I am very pleased with the clearer picture you now have. I too have a 24month meeting with my hepatologist to determine a course of action. I too am taking someone along to the consultation, (and am hoping for the same outcome). I don't have any pearls of wisdom to add but, wanted to thank you for a positive start to my day. Fingers crossed, for us all. Cheers
I like you have cirrhosis, diagnosed just over 3 years ago. At first I had ascites, two drains of 10 litres each within a month. Then the Spiro dose they seemed to get right , 200 mg . That was slowly lessened, and now I have been med free for 18 months, no ascites at all as confirmed by ultrasound . I live normally , and no one would know that have cirrhosis at all. I have been told now that I can expect a normal age span whatever that is without a transplant , for some strange reason I do have PH , but a totally normal spleen and normal range platelets too. I consider myself one of the lucky ones. I however have worked hard with my diet and exercise. Congratulations may you stay at this level o a long time.
That's what I've been told too, after initially being given six months if I was lucky. The only thing left actually wrong with me from the entire time I was sick and possibly dying, is CFS/ME: my body forgot to stop fighting, so now it fights itself. A small price to pay for my life, though
I was seriously malnourished , had muscular atrophy , and was very weak . I got no advice from the hospital except you must upon weight . I joined a good Fb group , where others had lots of experience and knowledge which they were happy to share , I also researched for myself . For muscular atrophy you need high levels of protein and excercise( walking longer distances and going up and down stairs quite a few times was a good start) . As I regained strength I pushed myself harder exercise wise , and researched more about nutrition and diet . Fortunately I was a vegetarian for quite a long time when younger so had a head start , and don't use preprepared food. If I couldn't cook , I ate easy things scrambled eggs , chicken , tuna and nuts . 2/3 Brazil's nuts daily will give you selenium you need .
Any help you can give is much appreciated. It seems very similar. We are at the stage where going upstairs is becoming manageable but proper exercise. Any suggestions of helpful groups would be appreciated too.
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