I am wondering if anyone can offer some insight into their own experiences of having/living with someone with decompensated liver disease.
My mum was hospitalised in May2020 and had pretty much all of the symptoms of decompensation - ascites, edema, HE & such. She was hospitalised for 7 weeks and we were told her chances of survival were slim. She also suffered a heart attack and had reduced kidney function at the time, however her kidney function has since improved. Since her discharge, she has managed to live at home independently with minimal help. However, some weeks she seems well and others, like this week, she can hardly walk two meters and seems confused, disoriented, has nosebleeds and diarrhea. She is taking lots of medication including 2 for HE. Her diagnoses on her sick notes ranged from decompensated cirrhosis to organ failure.
My mum is keen for life to return to “normal” and I don’t think that she has accepted that this may be her “new normal”. She wants to return to work (as admin) in the coming weeks, however I fear she will not manage. Has anyone had any experience of working a full time job with HE? Is it safe for someone with HE to drive? Has anyone who has had decompensated liver disease got their life “back to normal?” She is yet to have a follow up appointment with the consultant and I feel that we have been left with so many unanswered questions. Any help would be really appreciated.
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AlexJ91
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Someone with HE should absolutely NOT drive. Although for some reason it doesn't appear on the list of notifiable conditions to DVLA - the fact she is confused, disorientated etc. is enough to make her unable to drive and certainly insurance would be invalidated. Most people with this condition get told by their doctors that they can not drive and should notify DVLA of such.
Whether or not she could do her job with such advanced symptoms is up to her or her employer who should put in place 'reasonable adjustments' to allow her to work under the disability act, however, I know from personal experience my hubby who is classed as only having mild HE couldn't do a job. He can't concentrate for long enough, can't stick to task, can't follow even basic instructions and tires really easily and quickly.
It can take some time for people to realise this is it, their new life is somewhat different than the old. My hubby was actually diagnosed with 'adjustment depression' and had that for a good 6 years or so, I would say that only in the last couple of years he has acknowledged that this is it, he just has to live every good day the best he can and try not to linger on past life or even the ambitions that have been snuffed out.
You might want to look at the BLT publications on cirrhosis, living with liver disease and the patient charter document to see what you should expect from mums care, what living with liver disease means and cirrhosis and it's implications.
Thank you so much for your reply Katie, it is really informative as are the links you have included. Thank you for taking the time out of your day to respond, it is very much appreciated. X
Hello AlexJ91. I have decompensated cirrhosis, diagnosed Nov 2017. I have had all of the symptoms/complications as your mum, plus a few more.
I now feel well 80% of the time and am able to exercise regularly.
It is possible to live well with this illness, but HE can strike quickly if you're not looking for early signs. Mine are clumsiness, forgetfulness, mood swings, constipation. I have no memory of what happens then, but have been told I hit a nurse and swore at a doctor in A&E. I'm mortified about that. I agree with Katie, your mum definitely shouldn't drive.
If you have questions regarding your mums care, you should speak to a GP, or a member of the liver team.
Thank you so much for your reply, it is really reassuring to hear that you are well the significant majority of the time and offers us some hope for the future. I have emailed my mums GP today following yours and Katie’s responses to ask for her fitness to drive to be reviewed. Thank you again for your response x
Hello Alex - I realy do know what you are going through. How old is your Mum? No she certainly should not drive!! I nursed my wife for 18 months before I lost her last year. Has she had any falls? The most important thing I learnt was that HE is beyond your Mum's control. I learnt this the hard way. Sounds very much to me that you need constant outside help. Do you have any Community Nursing visits? Ask (insist) that your local GP sets it up. I wish that I had had the info from BLT long before - I could have diagnosed liver failure. It was as if our local GP's (lovely people and old friends) could not join up the dots. Not that it would have changed the outcome but at least I would have known what to expect, and I can imagine you are in the same place?
Thank you for your reply. It really does help to know that there are other people out there who understand the difficulties we are facing. My mum is 57 and I am 29.
Prior to her going into hospital in May she fell numerous times and was black and blue on entry to hospital. Since her discharge she has fallen once; however I suspect this may be her under reporting her symptoms which is another really difficult aspect of this illness. We visited her on Sunday and she couldn’t walk unaided and looked frail. However, her appearance and abilities vary so much from one day to the next it is hard to give an accurate description of what she can/cannot do.
On her discharge from hospital, the community team came to visit her to assess what support she needed. They said they ‘struggled to see what a Carer could do’ for her. Again, the problem is that her presentation is so variable from one day to the next that if they catch her on a good day she is bright, articulate and able to downplay the negatives.
When she was in hospital they told me she had a 50% chance of dying within the next 6 months but she has no care plan in place and no doctor or consultant who has actually explained if this is still an accurate estimation or not which leaves us with a lot of uncertainty in our lives. I have emailed the GP to review her fitness to drive urgently and I will raise the issue of having no Community Nursing visits in place with the GP today. Thank you so much for your reassurance and advice.
You have had really good advice from everyone👍 At the beginning of 2019 I had just left hospital with a similar diagnosis to your mum! My expectations of what I could do was very unrealistic and I have to say I think your mum is probably the same! I wasn’t working but thought I was just going to get a job, not drink have a hospital appointment every few months and had no idea how I’ll I really was! I was in and out of hospital 3 times within 4 months with various things, the last time diagnosed with mild HE. Social workers weren’t interested as I didn’t fit their criteria for needing help, Occupational therapists were again not able to do anything Z I didn’t fit their criteria, no counselling was available unless I paid for it!
I ended up doing a couple of hours volunteering 3 days a week, but there is no way I could have gone back to work full time. It is very hard to accept that life is going to be different, but can still be good! I worked really hard to get as well as I could and found the team I had were brilliant and supportive!
I hold your mum stays well and you look after yourself too🙏
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