I have been reading your posts with interests regarding your husband and his apparent stabilising of his illness. It is very encouraging. My question to you (if not too personal) is what symptoms does he encounter now? Is it purely just fatigue or more specific liver related ones? And how poorly was he at his worst? (You mentioned he was listed for transplant).
Thanks, Lester
Hi Lester, no problem with answering your query.
I first met my now hubby in 2010 at that time he was suffering from serious nose bleeds, fatigue, sleep disruption and a great many other wee niggles. In January 2010 his then GP diagnosed him as having anxiety/depression because at the time he'd been caring for his Dad who was suffering with dementia/alzheimers - no physical tests were ever carried out so they never looked for anything beyond the stress factor. At this time he worked hard in heavy engineering and was a fit long distance walker - t-total with no obvious risk factors for liver disease - though he did have a long term prescription of an antibiotic for acne which may or may not have contributed to what triggered his auto immune illness (we'll never know).
When he moved to Scotland to live with me he continued to have the above symptoms plus really bad tummy pains/indigestion after eating various foods. Looking back he was near skeletal, had no sexual function/ no libido, had obvious clubbing/clawing of his finger tips/nails. I can almost go down the list of symptoms on the BLT cirrhosis page and tick them all off as things that were happening.
It wasn't until early 2012 that he noticed blood appearing in his stools - he never told me about this and but put it down to a rectal tear (a friend had suffered similar). One night he started to vomit blood and I got him to local A&E where he was admitted to hospital for 3 weeks. He ended up in HDU, having blood transfusions and his consultant has told us subsequently that he was close to deaths door at this time. His bloods were 'deranged', he had 7 burst varices, he was horrendously jaundiced and his discharge notes state :- cirrhosis, deranged LFT's, Portal Hypertension and portal hypertensive gastropathy of the fundus.
He continued to have banding over the next year and then in 2013 was referred to Edinburgh to the transplant unit. They repeated his liver biopsy and just labelled his illness as auto immune cirrhosis due to burned out Auto Immune Hepatitis.
He saw a dietician in Edinburgh whereby he was deemed malnourished and suffering severe muscle wastage - he was only about 8 stone at that point. The dietician immediately started him on a diet plan to try and build him up again. He was also labelled as having adjustment depression in trying to cope with this sudden diagnosis.
Consultant at Edinburgh commenced an aggressive banding regime of his varices and he has had 42 banded in total.
His lingering symptoms continued to be chronic fatigue - both physical and mental where he could barely go a day without bed rest and needed wakening for lunch and evening meals, big problems concentrating, difficulty with simple instructions, severe sleep disruption and just generally being unwell.
His Edinburgh consultant put him on iron tablets for anaemia for a spell and also started him on a course of prednisolone steroid at 20mg but this did nothing to alleviate symptoms. She reduced this down to a maintainance dose of 5mg just because he has an atypical presentation of AIH - i.e. it was quietly wrecking his liver or had been for years without any outward sign so they want to keep him on the pred just to keep any small levels of inflammation under control. Transjugular liver biopsy led to the diagnosis of 'burned out AIH'.
He was put forward for liver transplant assessment in June of 2014 - he was then diagnosed with mild Hepatic Encephalopathy and prescribed Rifaximin to go along with his Lactulose. He was deemed in need of transplant but during the transplant assessment they discovered he had aneurysms in his splenic artery and he needed those dealt with by embolization before they could consider a transplant operation. Had they not found and treated those aneurysms there is a good chance he could have had a sudden and catastrophic/fatal bleed.
After the embolization operation he was listed for transplant.
We were told his need for transplant was borderline as he had no ascites and the continuous banding regime had dealt with the risk of bleeding varices. We got many mixed messages over the coming months with surgeons at clinic saying "We'll see you in clinic next month ....... unless you've been transplanted by then!" and others saying "You shouldn't even be on the list!".
Anyway, the embolization operation on his splenic artery had a positive impact on his liver health in that he suffered a partial splenic infarction (his spleen died). The knock on effect of this meant his enlarged 19.5cm spleen shrivelled up and this led to a massive improvement in platelet count (he was as low as 20 one time before liver biopsy and needed a platelet transfusion), his blood clotting time improved, his portal hypertension reversed and he has not needed any banding since 2014. His liver numbers improved so much that he no longer scored the minimum UKELD score of 49 for transplant listing and in 2015 he was delisted from the transplant list. We were informed they didn't do transplant for quality of life only for actually saving your life so with his improvement they said that the risk of transplant outweighed the potential benefit.
I have read that in some countries they actually do a partial splenic embolization to actually aid liver function though it isn't common practise here and isn't without it's drawbacks - hubby had horrendous pain for several weeks post op as his spleen was dying plus he's been left with a non-viable spleen which can mean increased risk of infection.
He has continued to have annual endoscopies, 6 monthly ultrasounds including one a year or two back which picked up some abnormalities and he ended up having to have an emergency ERCP procedure to remove gall stones which were trapped in his bile duct and also had to have a procedure to widen the mouth of the bile duct to prevent any future stones from becoming lodged. He has 6 monthly bloods and sees a consultant round about every 6 months or so.
His lasting symptoms are the chronic fatigue - a good day is merely exhausted but he can often push through it to go and do his bike rides or similar, a bad day is a write off completely and he still has days when he needs bed rest. He still struggles to make himself understood conversationally and has difficulties with understanding basic instructions (even working a strange shower as we meet on campsites can prove an issue). He can't concentrate, can't drive and struggles with social function i.e. he's lost that ability to know when you've outstayed your welcome etc. He did regain a lot of weight and muscle mass having been put on a special diet plan though we are seeing some of this dropping off with him having increased his exercise. Urgent need to toilet goes along with his meds and sadly that can have a really debilitating effect on him with frequent accidents or need to duck behind hedges, walls etc.
He sleeps poorly - 4 hours is a good night though wierdly if he has a longer nights sleep than that he is worse during the day. He has frequent niggly headaches which leave him drained and washed out all day. He definitely has the mild HE symptoms which almost appear like a mild dementia at times. Still has zero libido or sexual function, still has yellowing from time to time (especially when he's more washed out), still has some of the other wee niggles as listed on symptoms of cirrhosis.
He is on Lactulose, Rifaximin, Omeprazole, Prednisolone, Adcal-D3 and Phenoxymethyl Penicillin (the latter because he now has a none viable spleen so this is to support splenic function).
We make the most of the good days, I always liken a cirrhosis diagnosis to a roller coaster where there will be ups and there will be downs and you can't always/ever predict when these bumps will come so you just have to ride the roller coaster and take each day or each hour as it presents.
We know we are really fortunate that he is stable after all these years and we make the most of the good times. We were told he was in a 'window' of not if he will need transplant but when. Obviously, an infection or similar could send his compensated/stable liver into freefall so we do all we can to keep him fit and well, do EVERYTHING that doctors tell us to do and push ourselves to really enjoy life.
We are planning our next big cycling & caravan trip as we speak and we will be off soon to hit the North York Moors and Yorkshire Dales with our e-mountain bikes. 
When we come back he's due bloods, his 6 monthly scan and a telephone consultation with his local consultant is in the diary.
Katie
Thanks for taking the time for the very comprehensive reply. It seems like I am only on the start of this journey and in the situation where I just don’t want things to get any worse (symptoms are mild and I would say I am well compensated despite thinking I have mild ascites)
Cheers, Lester
I feel guilty after 6 years of your wonderful advice that i only now know what you & your husband are going through. I never asked because I was going through my own hell. I do however follow your progress & wish you all the luck that we've had & I can never thank you enough for saving my sanity. You were more help to me than any hospital or GP . xx
No need to feel guilty. In many ways we are more fortunate than many in that hubby maintains a semblence of quality of life. I don't suppose there are many folks who were deemed in need of t/p and yet are delisted and are now going out cycling upto 20+ miles per day on a manual bike or 2 x 38 mile cross country e-mtb trips in 6 days. In the grand scheme of things he's not doing too bad and I am glad we are such a good team. I am happy too that through our many and varied experiences we've been able to reach out and support others.
Katie x
I too had wondered how you gained so much knowledge, which you share and offer wonderful advice. That is an amazing (and in a strange way heartwarming) story. Wishing you both well.
As well as living the journey I have also been a member on the forum for the 10 years of hubbies illness plus done a few online courses through 'Future Learn'. They did one on liver health and another on liver transplant which were very useful and of course lots of reading.
I remember joining the forum last autumn. I’d been diagnosed with cirrhosis the previous March(21). I wish I’d found the forum sooner. I’ve found it an invaluable source of information. It’s prompted me to ask more questions of my health care team as well as reassure me when I’m a bit worried about stuff. You are a great source of wisdom and help. Not just to me but to so many people on this forum.
Caregiver for my fiance with alchohol cirrhosis.
Ascites drain
Coming home for the final time
