Worried about my mum!: This is my first... - British Liver Trust

British Liver Trust

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Worried about my mum!

jonesie77
jonesie77

This is my first post. I just don’t know where to turn. My mother has cirrhosis and is currently still in hospital after a sever episode of HE. She is 69 years old.

I think it was coming on for weeks when i think back to the out of character things she was doing and very forgetful and confused.

I’d never heard of HE until i read people’s experiences on here.

I found her one morning 3 weeks ago lying in her bed very confused. She couldn’t move much and she couldn’t speak. They thought she had, had a stroke. But ruled it out after a head scan.

She has had cameras down her throat and they found something there but said no bleeding? Which doesn’t make sense because she vomited up a bit of blood when she was first admitted. She got a bit better after 5 days then went down hill again due to constipation.

They have had trouble getting rid of the HE as she has always suffered constipation. So she has has to have enemas to help with that. The more she is going to toilet, the more she is coming round. She is still very confused at times. And still has no appetite. Still not able to walk as of yet and her legs have swelled even more than they were with water due to lying down for 3 weeks. She also has an appointment for a colonoscopy on the 27th.

I just wanted peoples advice on how she could come out of this? I understand the cirrhosis is there and it must be pretty bad to be having all these complications. But is there a chance she could come out of this walking again? And at least be able to be somewhat independent or is this her fate now? I get no proper answers from the doctors? I haven’t been able to see her the whole time she has been in hospital due to Covid19. I would really appreciate some advice? Thank you.x

16 Replies
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I have replied privately

Hi -my daughter was as bad ( though younger At 32) and came out of it after 8 weeks in hospital and back to her usual self. She was hugely swollen with fluid ( 2 stones at least) and very yellow. She had liver inflammation too.

I think the doctors don’t really know who will come out if it well and who not. They said my daughter wouldn’t survive and she did. ( now drinking again but that’s another story). She’s showing signs of HE again and won’t go back to hospital.

So - my advice is to stay positive and take it day by day. Look after yourself. My daughter was prescribed Rifaximin which really helps HE - it might be worth asking.

My best wishes with you.

Thank you Peony53 for your reply. Its such a worrying time. And i really don’t know much about it all......Only what I have read.

And some things that iv read are horrifying.

Im worried that my mums age doesn’t help her.

I am going to be asking about her medication today if i can find someone who has the time to talk to me that is.😕

This Covid19 has made the situation a lot harder for me to deal with as i cant see my mum at all.😢

Its so hard to be positive sometimes.

But your right! I need to think positive and try and see her coming out if this.

Im sorry to hear about your daughter i hope she gets better, she is so young.

Sending you and your daughter much love and best wishes.

Xx

Trust5
Trust5Administrator

Good afternoon.

I am very sorry to hear that your mother has been so unwell. It is really important and it is your right that you should be given the chance to speak to your mothers medical team a) to establish what the cause of the cirrhosis is b) what the followup plan is going to be c) what your mother's prognosis is ie what the future holds.

There are several publications on our web site which may be useful for you to read:

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/do...

You might also like to conisder calling the free Helpline next week and speak to one of our liver specialist nurses. It is open from 10:00 - 15:00 MOnday to Friday

0800 652 7330

regards

Thank you for your reply Trust5.

I don’t feel like iv been given any information by the doctors. . A doctor who had dealt with her the past three weeks told me her symptoms were the HE. He spelled it out for me and told me to have a look online to find out more about it.

Iv felt that they have no time to speak to me over the phone as they have patients waiting. And i totally understand that. But there has to be someone who has the time to explain my mums condition to me?

This lockdown has made it so hard to get hold of a doctor to get answers.😕

I will definitely be giving the links a read and will probably phone next week for some advice.

Thank you. X

briccolone
briccolone in reply to jonesie77

That sounds like pretty poor patient care by the doctor tbh.

Hi Jonesie,

I know this seems unreal. Try to "rehearse" your call, and take notes on what is being said. If you are prepared with questions, speak as quickly as possible. That will show the medical team that you value their time and are taking an active interest in your mum's medical care. It will also help if you can get the nurses on your side, they are of course very busy, but they know as much as the doctors do about her meds. You can ask us here too, after you talk to them.🙂

I have cirrhosis and take lactulose and rifaximin to keep everything moving, stay clear-headed. Otherwise, l feel slow in the head and also tend to be constipated. Lactulose is a syrup that mixes with water, makes you poop.💩 Rifaximin is a pill that breaks down bacteria in the gut so it does not circulate in the blood. In cirrhosis, these toxins build up and cause HE.

During the colonoscopy, they will be checking for signs of bleeding and hemmoroids, which only takes about ten minutes. It is good she does not have bleeding varices in the throat, but these can be treated. Common to throw up or even pass a little blood when HE left untreated. The goal is to prevent that from happening again.

They might put her on a beta blocker to lower her blood pressure. I take that too, and vitamin D to prevent osteoporosis. There is a strong correlation between hepatic pathology and impaired bone health.

I don't know if they have the staff to move her legs about in the bed, but the fluid build up might be helped by a diuretic. Moving her legs helps the muscles of course. It is common to have some muscle loss from the cirrhosis, and her protein needs are going to be higher. Sometimes they prescribe protein shakes to meet this need. I can't think of anything else off the top of my head, hope that helps set you on the right track! 🤞Best of luck to you & your mum. 💕

jonesie77
jonesie77 in reply to Bootandall

Hi Bootandall.

Thank you for your reply.

Yeah writing it all down seems a good idea.

I will try it for sure.

Iv got to the point i will try anything.

She is still confused but not as much as yesterday. So thats a good sign. 👍🏻

But she is still very tired. Hoping thats ok?

She has just been moved to a smaller local hospital and the nurses there are amazing. 😊

So i will probably be looking to speak to a liver doctor next. My mum has only seen her a handful of times so i’m hoping she will speak to me.

Thank you so much for your advice.

I felt so lost this morning whilst debating wether to write this post and reach out.

Im so glad i found this site.

You guys are amazing!

Hoping your ok and doing well!😊

Xx

It's okay, it's hard to keep track with all the new jargon! l think the docs appreciate it when you're actively involved, it is reassuring to both of you. You can then compare notes in the future, if necessary. 🙂 Mum is going to be tired, the liver processes everything that comes through the body, it is remarkable how much it can take really. As her mind becomes clear, she may be embarrassed to be reminded of the clouds she was in, best not to dwell on it. It is disorienting enough to be in hospital, with all the lights and monitors and people rushing in and out, poking and prodding. Please keep us posted here on her progress. 🙏 Best wishes xx🌈💪

jonesie77
jonesie77 in reply to Bootandall

Thank you Bootsandall.

Glad to know the tiredness is normal for now.

Will definitely keep you posted.

Xx

Hi - I can empathize with you completely as I have recently experienced the same with my own mum during lockdown. I think the most difficult thing about this illness is the doctors inability to accurately predict its path, which for us as families is distressing.

My mum had HE which left her unresponsive, I was told she had a 50% mortality rate for the next 3-6 months and was not eligible for a transplant/intubation and was advised to put a DNR in place. At this point, I didn’t see a future where my mum would be coming out of hospital. However, 7 weeks later she is still here and she is home. She has Ascites and edema in her legs which have both been significant but are slowly subsiding. Her alertness has improved significantly, however she is still a little confused. She is currently working towards being fully independent and looking at going back to work/driving in the not too distant future... I don’t know if these things will be possible, but 7 weeks ago I didn’t believe she would make the progress that she has. Therefore my advice to you is although it feels important to know what will happen next, it is much more important not to become anxious/focused on the future. Deal with each day as it comes and remember to take care of yourself - the worry and constant (almost obsessing) over what will happen next made me feel very unwell which isn’t helpful to anyone! Sending you and your mum lots of love and luck 💖

jonesie77
jonesie77 in reply to AlexJ91

Hi AlexJ91

Oh thats great, thats your mum is doing so well. 😊

Its such a worrying time. This does give me some hope. Thank you.

Maybe i’m expecting too much too soon.

Did your mum have difficulty walking aswell?

Xx

AlexJ91
AlexJ91 in reply to jonesie77

Yes she couldn’t walk at all initially due to the increased fluid in her legs and the fact that she had been lay in bed for weeks. She had physio and gradually regained her ability to walk without aids. She has a shower chair at home but that’s pretty much the only thing she is using to aide her at the moment.

I understand, I felt exactly the same. I think the doctors must have thought I was going mad as I kept ringing everyday for them to explain her prognosis to me. The doctor described that as she had entered a decompensated stage, the disease will always be there in some form but there may be periods of wellness mixed with deterioration and the deterioration can happen quickly. For me, the uncertainty has been the worst part of all of this, but as a family member I have had to learn very quickly to accept that I have no control over any of this and what will be will be. Xx

jonesie77
jonesie77 in reply to AlexJ91

That’s exactly how i feel. My mum has been up and down the past 3 weeks.

My emotions are all over the place with worry and the not knowing.

But you are right its something that i will have to accept.

Thank you so much for replying. You have given me some hope.

So very glad your mum is doing well.😊

Love and best wishes to you both!💜

Xx

AlexJ91
AlexJ91 in reply to jonesie77

I’m glad to have been able to offer you some reassurance. Keep me updated about your mum and remember to look after yourself 💖

jonesie77
jonesie77 in reply to AlexJ91

Will do. Thank you!💜xx

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