How bad is my dad? Is there worse yet to come? Hospital not saying much

[Jcd95]

My dad has cirrhosis caused by non-alcoholic fatty liver disease.

He has declined a lot since October, when we lost his wife.

He had been losing weight and have had cirrhosis for about a year and a half. He's on 40ml lactolose daily (to remove toxins?) and morphine about 3-5 times a week depending on pain.

He's had ascites for about 9 months now. The first drain he had was 15L 6Hr. He needs a drain every 6 weeks and has been draining 20L (6hr).The last drain needed to be done at 5 weeks and he only drained 16L. I think it's 5/6 drains he'd had in total, seeming to recover less after each one.

He's been becoming quite confused, he fancied a drive the other day but almost got into two crashes, not a single professional has said he is unfit to drive?? His eyes seem to be dilated, he's very confused with taking his meds and is starting to confuse day/ night. Has to be told multiple times what day of the week it is. He no longer walks but now shuffles as its like he is carrying triplets. He's had 3 falls in the lady 5 weeks, the last causing a nose bleed? It did clot relatively quickly but there was a lot of clotting. His eyes have been dialated over the weekend, very slow to talk, and move.

He can't eat but that might be due to losing his wife? His arms and legs are tiny and his stomach is huge!!

I would say he's been confused for about 2 months but have become very noticeable over this weekend.

Been given 6months-2yrs but the way he's declining, i would say closer to 6 months. I find it's difficult to talk to the professionals as to when palliative pathways need to be considered?

Does this sound familiar? Does it get worse? What can I expect? It seems like he has months left but nobody is talking about it. I think he has hepatic encephalopathy, is this likely to speed up the process of liver failure?

I'm going to call the Dr tomorrow for advice but just wondering what stage he sounds at? I know everyone is different but judging from symptoms, surely there are benchmarks?

[AyrshireK]

Hi Jcd95, sorry to hear about your Dad. Like you acknowledge no one can really give a prognosis on your Dad's condition. How old is he by the way?

He is being treated for potential Hepatic Encephalopathy with the Lactulose - I wonder if doctors could add Rifaximin to this as it is almost standard now to use lactulose in conjunction with rifaximin to treat HE. Even though he has never been told to stop driving it would be HIGHLY advisable. His insurance will be invalidated if he does have a bump. Whilst HE isn't listed on the DVLA list of notifiable conditions it should be as it affects concentration, speed of reaction and other issues which make driving hazardous.

Your dad is in the decompensated bracket and sadly with the repeated ascites issues his body is struggling. Is he following a low salt diet and/or on water tablets to help prevent ascites?

Whilst none of us want to think (ever) about our parents end of life there comes a point when we all have to face it. The British Liver Trust has a page and a downloadable brochure entitled 'Thinking Ahead - Planning for the Future' which might help with the discussions with medics and hopefully getting correct supports in place for you both going forward.

britishlivertrust.org.uk/in...

It might be an idea for you to speak with his doctors regarding the driving and get them to advise him about his responsibilities as a driving licence holder with a health condition. If he is over 70 he needs a doctor to sign off on his fitness to drive.

Best wishes, Katie

[Jcd95 in reply to AyrshireK]

He's hardly eating, his arms and legs are skin and bone, he has ensure shakes and manages a small meal a day if he's lucky.

He can't have water tablet's because his kidneys are starting to fail? And he also has heart failure,he had a shunt a year or two ago.

He's 65 years old, he's not been diagnosed with hepatic encephalopathy but the last few days he has been really bad? Is it normal for this to happen? I was expecting the confusing to continue creeping. He's gone from a little bit confused to very confused somewhat overnight.

He gave the car to my sister so he only has access when we are around but we both decided he was unfit to drive. Just can't get over the fact nobody had told him?

They offered him a Tipps shunt and feeding tube but he refused. At what stage are these treatment options given?

The confusion seems to be sporadic. The one day he didn't know the make of his car, the next morning he did but took a while replying.

Thank you for the reply, very informative. Better than the Dr's!!!

[AyrshireK in reply to Jcd95]

You might find the BLT page about Hepatic Encephalopathy useful. HE can be episodic and is a serious complication of cirrhosis. Although perhaps not formally told he has it he is being treated for it (that is what the lactulose is for) - ask about the Rifaximin too. britishlivertrust.org.uk/in...

The Tipss procedure could help ease his portal hypertension and reduce his ascites but a side effect can be a severe worsening of HE (in effect a shunt creates a canal through the liver, blood is then sped through this reducing the back pressure in the portal vein, reducing portal hypertension but as a result of not being filtered through the liver the blood isn't detoxified as it would be even through the damaged liver so it can lead to greater toxin build up).

The fact that Dad isn't eating very well is going to weaken him and rob him of all muscle mass, the feeding tube might have bought him extra time.

Sadly with Dad's other health issues particularly his cardiac history it is unlikely he'd be eligible for transplant so you'd just be buying him time but perhaps not ultimately be improving his quality of life.

I hope that you or your sister accompany Dad to appointments, at this stage he needs someone to help advocate for him and perhaps to help make sense of the med speak.

My hubby has needed help from day one of his diagnosis (April 2012), he has mild HE and can't make himself understood or understand med speak and technical information. He hasn't driven since being diagnosed as he just knows he would be unsafe behind the wheel owing to chronic fatigue and poor concentration. No one has ever told him not to drive either.

Do look at the planning for the future page I posted earlier. Also, the BLT page on cirrhosis might be helpful to you. britishlivertrust.org.uk/in... Without being too doom and gloom, Dad is very, very poorly.

Also, the patient charter which includes the standard levels of care your dad should be getting plus questions to ask his doctors. britishlivertrust.org.uk/li...

I'll also send you a wee pm about food.

Katie

[Jcd95 in reply to AyrshireK]

He's extremely stubborn.. They wanted him to go to hopsital but he's totally refused, a bit selfish to expect us all to deal with it but I respect his wishes.

He's also refused the tipps and tube feeding. Stubborn git!

You are absolutely right, his arms and legs are like sticks and his tummy looks like he has 3 babies inside

[Hidden]

Good morning Jcd95,

I can see AyrshireK has given you lots of support and information.

I hope you got some help at the GP this morning?

Please remember you can call the nurse led helpline on 0800 652 7330 Mon-Fri 10am-3pm

Best wishes

Trust9

[one2one]

If you don’t get the response or help your obviously in need from your GPs it would most certainly pay you to talk to the helpline service as mentioned by some other replies you have received. We all need help, take some weight off your shoulders and ring them.

You’re dad is grieving, he’s struggling so much with his personal thoughts regarding the direction of his life at this point.

Also his confusional state, as you say dietary needs are very poor, presumably his hydration levels are low too. that alone will cause a state of confusion.

Hopefully you will get help, and make life a lot easier for both your dad, and your family as a whole. Take care, our thoughts are with you 🙏 chrissie

[Jcd95 in reply to one2one]

His hydration is good, he manages to drink but is often sick when he eats

[one2one in reply to Jcd95]

I’m think 💭 a palliative input would be good in that they can assess and adjust medications for control of vomiting, + they have a good knowledge of dietary intake at various stages. You will find them a valuable asset, which in turn should give you some respite, and less to worry about.

Take care. Chrissie 👌

[eekk]

Enlist the palliative care team.

If he needs medications looking at or a visit to hospice or therapies they can help with all of that.

[Nessyb]

My dad had the same condition and passed away feb26th with heptorenal syndrome - he had to stop taking his diuretics and in the last 3 months was having fortnightly drains and filling back up in days.

We nearly lost him last June from HE and we had to stop him driving then. His confident personality had gone and was often anxious and down, although between episodes of illness and hospital admissions he could be quite stable and mind could be sharper at times.

For him the drains and filling back up led to a loss of mobility, confusion and he was almost always asleep.

Look after yourself as it’s not an easy road so wish you the best.

[Jcd95 in reply to Nessyb]

Sounds quite similar. How did your dad's drain go? My dad has a 6HR drain but you can guarantee he's there for 12-15hrs. He's on lactolose so he worries be might poop himself. Did you experience similar times?

Very refreshing to hear your story, I have been wondering how the drains will pan out towards the latter stages. He usually drains every 6 weeks but have noticed he's lasting more around 4 weeks.

It's very strange how his HE comes and goes. How much fluid would your dad drain? Mine is 16-20L a time.

His mobility isn't the best now and seems to get worse with drains. Do you remember how many drains your dad had before he passed? I think my dad will be coming up to his 6th

[Nessyb]

Also we had to ask the doctor to tell him not to drive as they hadn’t and he was unsafe but wouldn’t stop driving until they had told him!

[Nessyb]

He must have had around 15 + drains - he would be hooked up for 6 hours and initially there would be around 15/20 litres but this reduced over time although he was still getting just as big. He did start to get sore when it was every 2 weeks and had a couple of issues with the pressure of the Ascites opening up the drain site and having to have a bag attached. My dad did say to me that there were people having drains that had been going for a couple of years though.

When he had HE initially the staff explained the importance of the lactulose and gave him enemas to bring him around. He was quite severe and was only semi conscious and had to be put in a side room on mattresses on the floor for his own safety.

After the HE some days he was quite sharp in his mind other times he couldn’t remember names struggled with the computer and his handwritten became quite shaky.

He also had heart issues and towards the end was sleeping most of the time, unable to get comfortable, lost his appetite which had never been an issue before, sitting on the side of his bed rocking and just in a bit of a bubble I suppose not really engaged with the day to day.

His mobility went in the last couple of weeks, he’d been struggling to get up from the bed or the chair before but he became quite unsteady and had a fall on the ward before they told him not to get out of bed alone.

Wishing you both well it’s a terrible illness xx