Wanting advice/support about my dad🐻

[Karabro]

Hello,

I have recently joined this forum via British Liver Trust. My dad has recently been diagnosed with liver cirrhosis after a trip to A&E - it was a complete shock as we had no idea. He has been in hospital now for a week and is on daily lactulose as well as enemas to help clear the toxins and amonia that’s causing his HE. He has a swollen stomach and has had a drain and along with water injections to try and remove the fluid which was working. However today he was really dehydrated, drinking a lot but not really passed anything. He has been fitted with a catheter. He is just on a standard ward and hasn’t had any contact with a liver specialist just a gastric team - there is no gastric ward at the hospital. It’s really distressing to see him the way he is, 3 weeks ago he was fine and now he can’t eat or drink, is confused, hallucinating, sleeping alot and slurring his words. He also has a defribulator & low functioning kidneys. Drs are saying the cirrohsis is due to type2 diabetes & also long term use of heart medication. He’s not/never has been a big drinker. I am looking for any help or guidance as I want to try and get the best care I can for dad. We are based north west Manchester and it’s breaking mine and my families heart to see him go through this. Any help/support would be much appreciated ❤️

[AyrshireK]

Hi Karabro, sorry to hear about your dad, it's always a huge shock when a diagnosis such as this comes so out of the blue - my hubby was diagnosed with cirrhosis after presenting with decompensated liver symptoms back in 2012 - his is due to auto immune liver disease and he's never been a drinker at all.At the moment the key thing with Dad is the doctors getting him stable after this emergency admission. My hubby only ever saw a gastro at local hospital and they got him stable after his emergency admission.

Once you know that Dad is stable again perhaps you can push to get him referred to a hospital with more liver expertise. Manchester Royal Infirmary has a liver unit.

Going forward you'll need an exact diagnosis of why Dad has fallen so poorly - knowing the cause can help with trying to treat the condition i.e. as he has type 2 diabetes is this a case of Non Alcohol Related Fatty Liver which can be helped hugely with diet and exercise. Obviously he must have other issues too with his heart etc. so it's probably unlikely that transplant would become a possibility so it's a case of getting him stable and seeing where you go from here to manage symptoms of the cirrhosis etc.

Fingers crossed they do get him stable, at this stage he's in good hands and they will do all they can to get him as well as possible but you must be prepared that he is quite poorly at the moment.

Katie

[Karabro in reply to AyrshireK]

Hi Katie,

Thank you so much for replying - it’s really comforting to have support from others in similar situations.

Do you know how long it can take to get him stable? I know this may vary from patient to patient but his recovery seems very up & down. Yesterday afternoon dad was talking more & had even been for a walk with a zimmer - he’s also needing a hip replacement. But then yesterday evening he looked shattered, hallucinating, trying to reach for things & getting really hot - when my sister got there he had tried to pull out his catheter.

Is it usual to see his stabilization fluctuate like this?

In terms of a referral his heart dr who he had been seeing for 10+years is based at Mri which I think is the best place for dad. Who gives the referral is it the drs at hospital or gp?

He has been taken off one of his heart meds which they think along with his type 2 diabetes was the main cause and they have said to us non alcoholic fatty liver disease.

So at least we do have that as a diagnosis.

I’m going to see him again this afternoon - and will try to get an update from drs but sometimes they are not there & sometimes the nurses don’t know much.

He was only allowed visitors from last weds as they were concerned but since then they have pretty much said we can go whenever we want.

[Hidden]

Hi and welcome,

We are sorry to read how unwell your Dad is, it must be a very difficult time.

If you are UK based please do consider calling our free nurse helpline for a supportive chat on 0800 652 7330 Mon to Fri.

[eekk]

Hello I lived in your area and my father had same condition, I am here for support if you need someone to talk to it is a horrendous time and this board was my go to board for instant support

[eekk]

We were sent to Liverpool for everything relating to the liver

[Karabro]

Hi eekk ,

Thank you for replying.

We spoke to the dr this morning for an update & she said that they may not take my dad at another hospital as the hospital he is in now have already started treatment. I thought you could have treatment anywhere or is this not the case?