My mum has hidden her drinking, liver issues and cirrorsis for 15 years as I’ve been living in a different country. She was taken into hospital last winter, and I was told it was related to her liver, but no real further detail. Attending a consultant appointment with her last week has unearthed some huge questions, all of which I wish I knew in advance so I could prepare things to ask the consultant. Below is a summary of what I now know is correct.
She was diagnosed with Cirrosis and Hemochromotosis 5 years ago, and told if she didn’t stop drinking, smoking and lost weight, she wouldn’t be here in 5 years later.
Last year (dec 22) she went into hospital with ascities around the liver.
This year (Oct 23) she went back into hospital with severe ascieites, and HE. DR changed meds to include max dose of diruetics and lactalose (from google i know understand this replaces lost liver function).
She had a further scan which shows her ascities are now mild, and consultant has recommended all medications continue as is, with the attempt to keep her ‘stable’.
She isn’t a candidate for transplant (the only question I was able to think of on the spot) due to drinking, age, and general health.
She hasn’t drunk in 3 months.
Her confusion ranges from light to severe.
I guess what I’m looking for is some support and advice. She has started preparing for the end, as this was clear in what the consultant said to her as we apparently nearly lost her twice whilst she was in hospital.
Are there any questions, or specifics I need to pick up with consultant to get things moving?
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PerpetuallySad
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Thank you - is this a medical support service, or can you support with the emotional side of stuff? Don’t want to be contacting and bursting into tears if your team are there to help with the more medical side of stuff
Firstly welcome, and sorry to hear you find yourself on this forum for such difficult reasons.
My husband also has haemochromotosis and cirrhosis caused by a combination of the iron overload, alcohol (he drank heavily for around 20 years, has now been sober for 1 year) and being overweight.
The most important things for your Mum is she removes the stresses from the liver, the main one being alcohol. You might find her HE gets worse when there are other stressors like painkillers, or other drugs metabolised by the liver. This gives her liver the best possible opportunity to start recovering.
With the haemochromotisis, is she receiving treatment, e.g. venesection? If not, could be worth asking if this is a possibility. Also, if you have not yet been tested for it, request a test so that you don't put your own health at risk.
Good luck - it's very tough but not entirely hopeless, the liver is the most forgiving of all the organs.
You need to be direct with the liver team. Practical questions like
Transplant out of the question? So what is their palliative care plan, ie drugs/timescale/where do they expect her to be (home/hospital). What is the short term plan about stabilising her condition? All this is dependent on their prognosis of where her condition is going. You must ask about support services for you or whoever will be dealing with this. The toll on loved ones is massive - please take care of yourself. Good for you and better for your mother.
Take someone with you if you can as an extra pair of ears or at least pre prepared questions and pen and paper for the answers. If anything is unclear as them to repeat/clarify. Make notes of names and ask for contact details.
Sorry these may be obvious things - but hope some help in a small way.
Has your mother had the genetic test to confirm she has genetic haemochromatosis (GH)? If she has it confirmed then it is imperative that you and all first degree relatives also have the test and your iron levels monitored. No idea how well your Mum is now, but is she having venesection, to de-iron the body, it is a very effective treatment if she is able to tolerate it. The amount of units you have to have taken depends on the level of iron loading.
Totally agree with Hdon as it is a genetic condition. I had iron overload but I only had one gene from one parent, they say to confirm hemachromatosis you need to have the gene from both parents, although i think this is now subject to further research.
With regards to the cirrhosis, your Mum needs to change basically the things that pass her lips. It may be best to speak with a dietician which the consultant could refer her to. The basics are, no alcohol, low salt, sugar and fats. Usually high protein in the forms of chicken, beans, fish, eggs etc.. not usually red meat. Whatever goes into the mouth has to be processed by the liver, if it is something like salt or alcohol the liver struggles and slows down. The liver cleans the blood, if the liver slows down the blood doesn’t get cleaned as well which then creates toxins, the toxins pass through the body, the brain which then leads to HE. The fluid retention is the liver pushing it away as it can’t deal with what it has. This is a non medical speak overview of what is happening in her body.
The hardest thing for you and your Mum will be stopping the alcohol I am afraid. It is very hard for someone who has the habit and addiction. Please do get yourself some support as it is very hard for the person caring to understand your MUms thought and feelings. All the very best and don’t lose hope. If she can get to grips with this all is definitely not lost at all.
just to echo what Shep has said. Ask either the consultant or her GP for a palliative care referral. Hospices are fantastic, they can provide support for her and you. They can help you have some difficult conversations and coordinate the care she will need. They can organise aids around the house, different therapies, and emotional support. Some accept self referrals. Hospice support can run alongside any treatment from the hospital.
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