We have a telephone meeting this afternoon with the Consultants, not sure what this is about other then to discuss Mums condition but could you help me with some questions I should be asking. Up to now I have a question about hers meds and the Lactulose and whether a transplant is possible. What other vital questions do I need to ask. xx
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Toffegirl
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Ask about a consultation with liver specialist dietician.
Rifaximin for Hepatic Encephalopathy.
Transplant question at this stage is too early as she'll need to stabilize first and be abstinent for 6 months before she' d even qualify for referral for assessment. The decision to list for t/p comes from a multi-disciplinary team based on a whole raft of tests. It's a bit of a way down the line yet.
Best wishes,
Katie
Hi,
Have a look at our 'questions to ask your doctors' from our website and good luck with the appointment
Hi don’t want to duplicate advice here so ask if she can engage in alcohol support , this will demonstrate a desire to abstain there are a couple of medicines 1. Makes you sick if you consume alcohol the other takes away the cravings. I have no experience with these as I was able to stop straight away.
Is there any fluid build up the doctor could prescribe diuretics to help with this.
Ask about diet it will be loaded with protein the doctor could prescribe Renapro o which gives you 20g in one bottle the size of actimel bottle. I have a chart I can send you if it helps on protein values .
I don't think he needs the support as she hasn't had any withdrawal symptoms at all. I know that this has scared her and she knows how serious this condition is.
If in the future she is likely to be a candidate for transplant the 6 month period will need to be proven so the support is essential - its part of proving what will need to be a life long commitment to sobriety and there can be no suggestion of potential to relapse and that's where the support issue kicks in.
No one has even mentioned any support group to her. And at the moment she is too ill to even concentrate on something like that. The Consultant has just called and is happy with her progress, the lactulose issue was due to lack of communication again. The doctors told my dad was that anything not on the new list of meds can be discarded. But now the consultant is saying this is incorrect and she needs be taking it. Its getting a bit frustrating how they don't communicate.
It’s not a question about a group but more about engaging with the alcohol services at the hospital, she is staying in. They are able to talk to her, at her bedside. Ask about the situation and hopefully your mother will gain a positive outcome?
Many GP's and even gastro consultants don't fully appreciate the changes in a person’s personality due to HE.
The words “Hepatic Encephalopathy” if taken literally. “Hepatic” meaning, “of the liver” and “Encephalopathy” means damage or disease that affects the brain. So the words mean, Brain damage caused by the liver.
So, the doctor or consultant will often treat the liver aspect and limit the amount of damage being done by the liver's inability to process toxins.
Most often, the amount of brain damage is ignored by GP’s and gastro consultants. There is a test that GP’s should be aware of called the “The West Haven Score”: gpnotebook.com/simplepage.c...
This is a grading score system to identify the severity of the condition and the amount of damage being done. But most of the GP’s I’ve spoken to have never heard of it.
There is a three years study I’m involved with that will require GP’s to use the West Haven Score system when assessing patients, so this will help to get this scoring system known.
I would ask this consultant what your mother’s West Haven Score is. Their face may drop, or light up in surprise.
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