"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Sunday, 31 October 2010


Clocks went back so in old time, 5.30am. Achey and fidgety, disturbing T. Also having strange dreams, the last involved facing a tiger who jumped out of the hedge in our back field (damn you, codeine), so finally get up, come downstairs, make cup of tea (trusty British cure-all), slices of toasted tea cake (carboloading), and log on.
Muscle wasting and weakness was the sudden onset symptom that took me to the doctor in May. No medic has confirmed if it was the cancer, the cirrhosis or the hepatitis. Now I only have the cirrhosis left (or at best fibrosis with borderline cirrhosis according to my Fibroscan) it must be that. The effect is that when my muscles are used for something unaccustomed they react hours later as if I had run a marathon or climbed a mountain. At the same time, if I sit around too much I get twitchy and have to take some exercise, including during the night. So each time I wake (every 3 hours or so) I have to get up and walk somewhere (usually the bathroom). Maybe I should put my yoga mat down in the bedroom and do a Salutation to the Sun stretching routine every time I wake and call it a Salutation to the Moon! I've looked a number of times but haven't yet found a forum similar to the Macmillan or CRuk where people have cirrhosis or similar symptoms. Cirrhosis can be reversed if you remove the cause: alcohol, hepatitis. Accordng to my last blood tests taken by Caravan-a-nan, the hepatitis has been subdued again, so what now......?
Searches of PubMed online are interesting. I've found research publications by both my liver specialist and gastroenterolgist. Don't read the full articles, wouldn't understand the medical terminology, but the abstracts are a good enough summary for my pea-brain. Some research shows that patients with cirrhosis have metabolic acidosis after exercise (an accumulation of too much acid to you and me), which results in excess lactate, the 'burn' that athletes get. Not that I've ever run 100 metres against Usain Bolt, but this is the feeling I have been describing from day 1.
5.15am. Still here. Have just checked my email and found message about post op days from liver lady on Macmillan. She is monitored at Addenbrookes which has liver specialists. Quick online search reveals that Addenbrookes offer all patients with chronic liver disease support from a specialist dietician. Because: "Patients who have chronic liver disease have a range of nutritional issues" and "Muscle wasting can be reduced in patients with cirrhosis by eating starchy carbohydrate snacks between meals and at bedtime" How useful are these forums! Thanks so much Ess. Once I've had more sleep I'll check this out further. Have had no professional help or advice on diet so far so help/advice from fellow patients is really useful.
Back to bed zzzzzzzzzzzzzz

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