Hepatic Encephalitis Help

[HannahLB1]

Hi There,

My mum acquired Hepatitis C from a blood transfusion with infected blood in the 1980's. She had always managed quite well and was regularly monitored, but she never wanted any treatment for the Hep C.

In June this year she was admitted to hospital due to fluid overload thought to be from kidney problems she has. While being treated for this she acquired a urine infection that was left untreated (the Dr's were saying the delerium was typical of someone her age) and she rapidly declined into a coma and I was informed this was likely to be due to Hepatic Encephalitis.

Mum has since improved but still remains bed-bound and with an element of general confusion. I am aware of how serious HE can be, I have spoken to her GP to ask why she has not had a liver follow up and scan and why she has not been prescribed lactulose. This weekend Mum has got increasingly agitated, confused and distressed and today I have called the GP, rapid response and the district nurses but none of them seem to be fully aware of the implications of HE. I had printed the HE passport ad left it for all to see but still I've been told "it sounds quite specialised, we will need more information before we can do anything"

How can I make sure that mum's healthcare team and carers are fully aware of how serious HE is? I feel like people don't believe me because they haven't heard of it.

Thanks

[Jennyhadenough]

May I ask if your mum is a candidate for the cure for Hep c

[HannahLB1 in reply to Jennyhadenough]

She was last year as they were offering her a new treatment (which she refused - she’s always been reluctant to be treated and I’ve never understood why even after talking with her at length about the treatment). Now I’m not sure, but I’ve asked for an appointment with her hepatologist and will ask again then.

[Jennyhadenough in reply to HannahLB1]

I have read a lot of positive so far. I have autoimmune liver disease. A few times when I was at the blood drawl lab, I met a few very happy and excited patients getting their final blood test to see if they have been cured.

[Hidden]

Hi Hannah,

It may be useful to call our helpline and we can have a chat about your mum? It is open Monday to Friday 10am to 14.45 on 0800 652 7330

Warm wishes

Trust1