Post liver transplant NASH ???

[cherrygirl13]

Hi new person - husband has had liver transplant 2014 - now been diagnosed with F4 fibrosis ??? NASH/NAFLD - we cant seem to get a proper diagnosis - liver bloods ok but fibroscan was 16kpa and had liver biopsy shower no graft rejection but FVR??? 4 and something else I can’t remember - doesn’t drink alcohol but is a badly controlled diabetic on 3 different insulin’s and 2 tablet meds for diabetes - had transplant for hep C and cleared February 2016 - donor liver was 65 so it’s a 70 year old liver - any ideas ?????

[nash2 Partner]

Hi Cherry

post transplant issues can get pretty complicated. We don't know much about that as we are focused on not getting to that point. Most of the people who have had transplants feel better and stop coming to the forum so I don't know that you will find much advice here but certainly lots of support.

Wayne

[cherrygirl13 in reply to nash2]

Thanks 👍 do you know if there is a group that covers post-transplant ??? As most of my questions/interests will be about cirrhosis and since we have already done Liver failure/hepatic encephalopathy/surgery etc I know quite a lot about the liver 🤣 just wanted to see if anyone else had experienced NASH after transplant 🤷‍♀️ As NASH is a new one for us - he’s had almost everything else 🤦‍♀️

[nash2 Partner in reply to cherrygirl13]

I don't think that is common. My guess would be that you are dealing with a genetic issue with the new organ. A Nash friendly diet likely helps but something else is going on.

[cherrygirl13 in reply to nash2]

Thank you 😊 I just can’t seem to get my head around it all 🤷‍♀️🤷‍♀️🤷‍♀️ It’s either incredibly bad luck or as you say something else is going on.

I wonder if you could help with another question ???

As his Fibroscan was 16 kpa (I think) and they have said advanced fibrosis on biopsy or whatever FVR4 is (not come across that one before and won’t google in case I get scared 😟) - would a change in his diet cause any regeneration 🤷‍♀️ As he has had surgery for 2 protruding discs and has the large incisional hernia from transplant it’s hard for him to exercise regularly - his diet is poor because he sleeps all day and then is awake all night ‘snacking’ on all the things he’s not allowed 🤣 because I am asleep and can’t tell him off 🤦‍♀️ Or is he passed this stage ??? He also has said that he recently has been feeling confused again and disorientated so I wonder if he has a touch of HE again which to me wound indicate his liver is in a worse condition than we think 🤔 if it is then I would just let him eat whatever he wants but if there is any chance of reversing then I would encourage him to follow a NASH diet ???????? (Sorry 🤦‍♀️ Once I start writing it then becomes an essay 😲)

[nash2 Partner in reply to cherrygirl13]

I have no idea what FVR4 means. A NASH diet is good for almost anyone really so no harm there absent some uncommon food sensitivity. A poor diet will make everything go down hill faster and all the symptoms will probably come back. You should be talking with your transplant team. Often a failing transplant gets moved to the front of the line for a second. A FibroScan of 16 would normally indicate a late stage disease.

[cherrygirl13 in reply to nash2]

Thank you for replying - we don’t have any contact with Kings unfortunately as they sent him home following transplant with ‘pockets of pus’ under his wound 🤦‍♀️ Which then caused sepsis and he had to have his wound opened up and then left to heal from the inside out - so as I am a Reg Nurse I had to pack it and care for it for 19 months 😢 and then of course he has the massive hernia through the internal wound and large loops of bowel poking through - so no one will touch him 🤷‍♀️ And consultant has already said he wouldn’t meet criteria for transplant again as he’s continued to smoke and is classed as ‘non-compliant’ as he refused to attend Kings for follow up appointments because they denied sending him home with active infection - even though I had got his hospital notes and it states quite clearly that the day before discharge he had a CT scan and the pockets of pus were in the report 🤷‍♀️🤦‍♀️🤬 so that’s a big no no - he hasn’t helped himself but also I can sympathise with how he feels about Kings as they were extremely rude and mean about it all when he just wanted them to admit they were wrong to send him home so early and they wouldn’t 🤷‍♀️🤷‍♀️🤷‍♀️

[nash2 Partner in reply to cherrygirl13]

Oh my, that is a horror story. That is the kind of thing that started me on my course as a patient advocate. I was ignored for 5 years even after my surgeon reported a cirrhotic liver during gall bladder surgery. I understand your husband's antipathy toward Kings but it is just so difficult when an institution fails. They rarely redress their mistakes. Not a good statistic I imagine, and any failure to follow their rules is a disqualifier.

In the absence of some other professional intervention, about the best you can do is try to make what time is left comfortable. Can't really be that, but even perfect compliance, absent intervention, is just stalling for time. Hard thing to face and I feel badly for you but sometimes the die is cast and you can't blame yourself for dysfunction in the system.

My very best wishes for you both.

Wayne

[cherrygirl13 in reply to nash2]

Bless you 😔 and thank you for your wishes and advice 🥰

[mauschen in reply to cherrygirl13]

I am so sorry to read your story. It is obvious that you are an intelligent , caring person up against an inadequate system and non compliant patient. Unfortunately, you cannot win against either!

Uncontrolled Diabetes is a red flag for the liver as you probably know but it seems strange for the transplanted liver to develop last stage Fibrosis? Was the infection a catylist? I don’t know but it would be interesting to find out. Unfortunately, when no follow up was conducted at King’s, it would be very difficult to link infection as a possible „cause“.

Sadly, there is no turning the clock back and the future looks bleak. Therefore, I wish both of you the strength to face the future.

Take care!