long term problems after a coma

Hate to say it but the symptoms you describe seem to apply in a lot of liver cases, it isn't just because you were in a coma or had the bleed. That feeling of being ill all the time and life just passing by is exactly how me and my hubby are finding things.

I note that you have had a tipps procedure and previous bleed and this would indicate quite serious liver damage. Have you been assessed for transplant at all? Hubby and I said we wouldn't want to go the tipps route unless a transplant was on the cards as the tipps in itself can lead to other issues.

My hubby had a massive upper GI Bleed from varices but these have been treated by means of repeated and aggressive banding rather than a tipps procedure. He was diagnosed in April 2012 and finally assessed for transplant in June 2014 and has been listed for transplant since 3rd July 2014 (so 6 months now). We are finding that although he is listed for transplant he isn't classed as poorly enough 'yet' to actually get one (he's not jaundiced, no ascites, no glaringly obvious HE, no pain), so, we are in limbo, hubby is 53 and previously very fit and active, his cirrhosis diagnosis came completely out of the blue being a tee-total and previously healthy guy.

His daily routine now involves disturbed and sleepless nights - even if he gets a good nights sleep it doesn't recharge his batteries and often feels worse on these days. He is lethargic all the time, even a small bit of housework tires him out, he used to be very, very fit and active and this sudden reversal of his life causes him much upset and frustration. He lacks drive to do anything, can't concentrate to read, no longer enjoys writing letters, trips out to see family are too exhausting, he's worried that he's talking gibberish when conversing with folks so his confidence has taken a knock. He no longer feels safe driving due to his wavering concentration & sheer exhaustion so he's sold his car as it hadn't moved in over a year. We can see hills from our house which he'd dearly love to walk but they are a challenge too far and it severely gets him down. Some days we can go short walks but they are far from what he used to enjoy and it depresses him. He often needs the loo suddenly and without warning which limits where we can go out - this is probably partly due to the lactulose he has to take. He is getting some mild episodes of confusion where he forgets small things and he's been put on rifaximin for this as it may be the start of hepatic encephalopathy.

They reckon he has had some type of auto-immune hepatitis in the past which has now burnt out and is no longer active but its left chronic advanced cirrhosis which has obviously led to the assessment and decision to list for transplant. However, his blood results fluctuate in that some months he no longer matches the criteria for transplant and the next he does. The chances of him getting one and the chance of his life back seem somewhat slim and we are in for a long wait meanwhile he goes on feeling 'crappy' and as you say as if life is passing him by. We married in August 2012 and owing to this condition we can't even share a bed owing to his sleeplessness & he has zero libido.

But, he has to wait until he gets significantly more poorly before he'll have a chance at getting better - not the most pleasant of prospects. On the other hand he is still 'healthy' enough to do some things, there is no guarantee that a transplant will prove a success so they aren't going to risk a major operation which may leave a person with damaged kidneys or diabetes or other worse things (or indeed possibly kill him) unless by giving them that transplant it will save their life.

It is hard to stay positive at times but I try to and have to try and keep hubby going too. Its a rough illness this liver disease, we've also had to battle for benefits as there is no way hubby is fit for any type of work (he was previously a welder in heavy engineering) and my work has had to take a backseat as I care for hubby and take him to and from (and support him at) the many, many medical appointments, we just can't plan ahead from week to week and of course being listed for transplant means we are on call 24/7 and movements are restricted somewhat.

Sorry I can't put a positive gloss on your condition, are you seeing a hepatologist? have you been referred to a transplant centre? Both are needed if you're poorly as you are and perhaps you'll get your chance at a new life soon.

All the best to you,

Love Katie xx

That sounds exactly what happened to me in March 2013. Sadly to say it will affect you for life. I had to take early retirement because I suffered brain damage which affects my short term memory. As for sleeping this is a huge problem for me my GP has tried everything he could possibly do for me but to no avail I sometimes go THREE days without sleep and even when I am exhausted I still can sleep. Then I eventually do and sleep for 72 or so hours so I have no routine to my life. I am slowly beginning to accept this is the way it's going to be

hi katie sorry for late response but hope your husbands appointments go ok, i am still in shock that he has had 42 banding procedures i cant believe i moaned about mine, i have got cirrhosis due to alcohol and a medical condition i have doctors also say i was just one of the unlucky ones, i must say i do like the positives what have come out of it though i appreciate life a lot more and also a lot of my friends and family have really reduced how much they drink so all good. let me know how your husband gets on and thanks for your replies its much appreciated jojo xx

hi bolly thank you for that info i am under mri i am there on wednesday so i will look out for the leaflets it would be lovely to meet some people who have been through what i am going through at moment. and you are right about gps and specialists they never point you in right direction they think there job is done with just giving you test after test. i take it your from manchester

hi jim thanks for the response and i am sorry to hear its been a hard journey for you i defo understand about the no sleep but fingers crossed i only have bad bouts every 2 months last one i was awake 5 days straight but ended up collapsing and was back in hospital for 5 days as i had a build up of toxins and i couldnt walk on my own was scary as they scanned my brain thinking i had an infection but was all ok thank god. i still holding on to hope that things will settle down in time due to me not drinking for 2 years and bloods being quite good and levelling out, but if not be just a way of life i will have to get on with. just wondering have you tried any herbal teas for sleep as i have camomile and it does relax me just in case your open to trying new things i also take a few other things to help with bowel movements, and manuka honey at night as that is why we dont sleep well because liver at night is pumping all toxins out of your body and as energy is so low when you go bed it uses last reserves so it wakes you up but honey is really good just before bed for the energy for liver but its also got serotonin in it which is good for sleep, i have only just researched this took the honey past week now and its defo been better nights sleep i have had. anyway sorry for waffling and keep in touch take care jojo x