Help. My mum has bad Hepatic Encephalo... - British Liver Trust

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Help. My mum has bad Hepatic Encephalopathy

oof2019
oof2019
10 Replies

Hi. My mum is very poorly with autoimmune hepatitis. It's happened v quickly but currently too ill for transplant. She's in hospital. Almost lost her a week ago. She's almost non communicative. Distressed. Agitated. No mobility. Before this she was a very active lovely person.

I feel she wants to talk but can't find the words etc. She can raise eyebrows etc when I chat to her so I know she can take things in.

I want to be able to comfort her and communicate but I can't imagine how she's feeling inside and what might help her. Is she thinking things or is she just blank inside? I just can't tell.

Can anyone who has gone through this help me with any suggestions?

Thanks.

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Trust1
Trust1Administrator

Hi oof2019

Sorry to hear your mum is so unwell. Is she having ongoing assessments for her HE and looking at various treatments?

If she is having trouble communicating, then it may be worth her medical team liaising with the Speech and language therapy team in hospital who can look at various aids to help her. Take care and remember you can call the helpline tomorrow if needed.

Trust1

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Countrywalks
Countrywalks
in reply to Trust1

I hope your mums condition improves soon you must be very distressed all of this happening so suddenley liver disease is a very cruel thing and can be silent for years i hope your mum gets as much help from the drs as possible praying for you both xx

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oof2019

Thank you. Yes. It's the speed to go from. Such a vibrant busy person to how she is now. What a horrible disease. Thank you.

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Countrywalks

What age is she ?. I know its awful this disease and sadly it wasnt diet or alcohol related in this case so could not have been avoided at all its so unfair it really is and because its liver disease there is not the support or knowlage available like there is with other diseases its horrible like a nightmare for you .

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oof2019

Hi. She's just 67. Always exercised. Eat v well. Limited drink. No smoking. I know there's many horrible diseases out there and lots of amazing peope suffer but if only we'd found out sooner...

She's not a typical 60 + year old. V mobile and active. Never been in hospital until now. Up and down slides with my kids. More bendy than most 40 year olds in yoga!

I am just keeping everything crossed that she becomes better enough for a tp. Thanks for taking the time to reply to me.

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Countrywalks

Thats terrible and she looked after herself so well too it just shows how such terrible things can happen even if you try to do all the right things to protect your health theres no way you would of suspected liver disease at all totally out of the blue terrible for you .if she is fit tho hopefully a transplant will be a positive option .

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oof2019
oof2019
in reply to Trust1

Hi. Thanks for your reply. She's been in hospital for a month now as too unwell to go home. That's a good idea re speech and language. I'll get on to that tomorrow.

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Smyally

Hi. I’m sorry to hear that your Mum is so poorly. I hope she improves soon. Will be thinking of you both. Take care xx

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TwinkleToes02

Hey Oof! Hows your mum doing? Its been over a week since you posted and was hoping to read a positive update. Im hoping theres good news?

I started an in depth reply to your post but never sent it... I will now. First tho, my apologies for the mass volume of my reply! Its a biggins!!

Hi Oof... Im sorry to hear about your Mum. I found your post just now b/c Im looking for info on possible reasons for my Mom and her being so "off" lately. Similar symptoms to your Mom + my mom has these afternoons which can be debilitating in very hard shakes, sweats and fatigue.

Ive only just learned about the HE possibility and am trying to learn it all.

Going back to Nov 2019 my mom was diagnosed with Acute Liver Failure from taking too much acetaminophin. After breaking her wrist she refused to take oxycodone. She went bad to worse to almost gone in about 18 hours.

She was put on the donor list.

Oof she was the same way your mom is for 11+ days. At day 3 her team didn't think she was going to make it. I dont think I've ever been so frightened. I tried with all I had to stay positive esp when around her. My sweet 9 yr old son instituted a "no negativity rule" in her room. Whenever any of us were overwhelmed or discouraged we walked out.

My mom was an extreme shade of yellow, her ammonia levels were off the charts and rising, her kidneys failed so she needed dialysis which her system rejected 3 diff times & they had to get creative there with inserting the tubes...

On her "good" days she barely knew where she was, how she arrived, what yr it was etc. Most days she slept. ALOT. She was incoherent or jabbering jibberish. One or 2 random days she spoke crystal clear & was back to her norm witty self! Then by the next day back to a shell.

After 2 donors didn't work out the 3rd did! She had a very successful surgery. With many complications post. Shes 7 months post. I think shes frustrated because ideally she thought she would be at a different place by this point in her healing & recovering. The meds are hard core with harsh side effects. Im sure you've read. So with the physical stuff still so foreign to her + the mental aspect creeps in - she is down because shes exhausted and shaky, irritable some times, forgetful other times, sad others and then to boot feels guilty. My heart hurts for her. I can't imagine. She is seriously the toughest human I've met ( I know most everyone says that about their own Mom but for real she is extraordinary!!)

We tell her how proud of her w5s are, how great shes doing and how far shes come most everyone feels diff ailments. How well she's handling it all. How strong she is. Esp that she didnt see just how close we came losing her, how bad off she was. Her drs are thrilled with her progress of which that i also remind her, often.

Anyway, a piece of critical advice a Dr told us was to remember this is a marathon not a sprint! A long difficult road ahead, one of which I hope she will travel. Im sending positive and healthy vibes her way along with prayers for you both!

I'm sorry for my massive reply... my point was to let you know the following to

•Keep your faith, no matter how impossible it may seem. •Talk to her coherent or not. •Ask the team questions...do your research be diligent for any & all issues. Has she been tested by her neuro? Have they administered multiple types ie, scans, EKGs, etc. (Its not to say you aren't but a few times I almost didnt speak up... speaking up proved to be critical for my Mom.) What state is her cardiologist saying her heart is?

Remember you are not alone!! Anytime you need to reach out please do.

Thinking of y'all!

~TwinkleToes

PS this site has helped me more than words can explain, thanks to you ALL

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oof2019

Thank you so so much for your detailed, useful and thoughtful response. It sounds as though you've been through v tough times with your mum. Liver disease is a horrible thing. It gives me hope though for my mum. To see how your mum managed a transplant. Although I can still see it's tough going. My mum is better than she was. Just 2 weeks ago she wasn't talking, not really eating or moving. She's now talking, eating well and walking with a frame. She's still v sick but there is a glimmer of hope. It's just lovely to be able to talk to her again.

Thanks again for taking the time to email me. As you said. This forum is great. Xx

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