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Permalink Reply by Jill D on April 25, 2012 at 1:19

Sam

I have an idea that I would like to run past you, what i feel is missing from any site that could be useful is a 'I wish I had known about that at the time' or 'what they don't tell you'.  By that i mean something along the lines of a fact sheet, non medical just giving information from carers who have been in a situation advising others who are now finding themselves with the same problem.  My contribution would be Cdiff, i went through that nightmare with mum a few years ago, I couldn't research what was wrong with her because the hospital didn't name the problem, a fact sheet could list what cdiff is also known as, this could be picked up by search engines.  Among other terms Cdiff is known as "things you can catch in hospital", "something on the ward", "a spot of diarrhoea" or "we have to send a sample away for tests" when in fact the distinctive smell is a good indicator of what is going on.  We were in ignorance about what was going on, after she was re-infected for a second time we treated her at home, there is very little about the subject that I didn't have to deal with, I know what information I would have liked to have known and no-one told me.  There are support groups but without the name of the problem you can't find them.  We were told that it would be fatal and should give up, I got sympathetic responses from GPs when i said I thought I could get mum through it, they weren't convinced but went along with it, I did get her through it although the cost to my sleep and energy levels was very high.

 

If my idea is a useful one then I would suggest that anything submitted should be checked by someone with medical knowledge and altered if something is incorrect.

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