"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)

Wednesday, 17 November 2010

Is it better to be in the know?

My GP's 1st letter to a consultant included the phrase "Mrs S.. is a lady who likes to understand her medical conditions and investigations fully". I've not come across any reluctance so far to give me copies of test results and copies of letters between consultants, when I have asked for them. If there's a term I don't understand, I ask (thanks GP cousin!) or look it up.
On the 'chat' forums I've come across patients who have refused what they consider irrelevant procedures (i.e. a lady with pain in her appendix area given an appointment for an '...oscopy' that would probe a pain free area; another with cancer in both breasts only offered treatment for one).
Yesterday on one forum I 'chatted' with a lovely man, lets call him H. Having recovered from brain surgery following a bad car accident he was on medication for fits, which had damaged his liver and now he needs a transplant. He's being monitored at one of the 6 transplant centres. He's confident his team of medics will look after him and asks no questions. He told me didn't have cancer but had Child's Pugh disease so I replied it was a scoring system to assess chronic liver health and necessity of transplant, not a disease. He did think the word 'cirrhosis' sounded familiar. And he knew from a GP letter that he had legions (sic) on his liver, 5-8 sections of them. A right Roman Army! I said I thought he might mean 'lesions' on segments 5,6,7 and 8, livers having 8 segments.
He asked if I was Gregory House (Hugh Laurie 'House MD' tv series). That's the best compliment ever!
In passing he said he was tired much of the day yet had trouble sleeping at night. Might be anxiety, but if you read up on symptoms of cirrhosis a common one is sleep disturbance and needs a doctor's advice on how to best deal with it. Thinking you have Childs Pugh disease and not knowing you have cirrhosis could mean side effects/symptoms being missed and left untreated.

Wild wet day so no walk.
wii fit: 800 aerobic steps, 25 mins yoga. Cheeky thing now says my ideal weight to aim for is 9st 11lbs.

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