long term problems after a coma

[jojokarak]

hi all, i have been out of a coma now for exactly a year after a bleed it was an induced coma due to needing tipps. luckily no bleeds since but i still have not been right since. i have lack of energy, sleepless nights, trouble with toilet, i have had numerous infections in last 6 months. i thought by now i would of had some kind of normality back to my life, i keep getting really frustrated and quite angry as i feel like time and life is passing me by, am just wondering anyone had anything similar happen and did your life get some sense of normality back as i am sick of feeling ill....

[AyrshireK]

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

[jojokarak in reply to AyrshireK]

thanks so much katie for replying i feel so alone with this condition not much help about for people or their families. the tipps were done due to me previously having 13 banding procedures within a year if they hadnt done the tipps i wouldnt be here now!

i see my liver consultant once every few months at moment he hasnt mentioned me needing a transplant, i think they are waiting to see if things just settle down as they did say it would take anywhere from 12-24months to recover from coma, so i still got my fingers crossed.

sorry to hear your husband having a rough time as well. i defo understand about the confusion and forgetfulness though it scares my husband to death and me some times but i know its just a build up of toxins so i just have a sense of humour about it, i may have the days where i feel like giving up but not a chance will i, it just means my life has to take a different course from the one i pictured i may have had.

i hope you have some support as well am sure its not easy not knowing what your going to have to deal with from one day to the next.

and i am 37, and from manchester, where are you if you dont mind me asking x

[AyrshireK in reply to jojokarak]

Hi again Jo Jo, this forum is a great place for support and chat and you'll find you certainly arn't alone.

I am 41 and in Ayrshire, SW Scotland although I was born in Bolton.

Hope you do get some improvement, hubby has had 42 bands during the last 2 years - he's off for another dreaded endoscopy this week. His consultant wanted to 'obliterate' his varices so got aggressive with them, they've never actually mentioned a TIPPS though there was a guy on the ward with hubby who had one and his was to treat repeated bouts of ascites too - hubby has never had ascites and we really hope he makes it to transplant before that. His portal hypertension also led to aneurysms in his splenic artery and his spleen has now died after they did and embolisation procedure.

Hubby was initially seeing a local gastroenterologist (after the sudden upper GI Bleed) but after a year and with the sleeplessness & symptoms not abating and with doc not being a 'liver expert' he felt we should 'touch base' with the transplant centre in Edinburgh. At that time they didn't feel hubby should be assessed for transplant and we were given the option of remaining with Edinburgh or returning to local care with Edinburgh co-ordinating things. Despite the lengthy journey we decided to stick with the liver experts in Edinburgh and they took over the banding procedures and all further treatment. A possible slight flare of AIH last year was treated with prednisolone with absolutely no positive effect. A 2nd liver biopsy just confirmed the extent of cirrhosis and that finally led to the transplant assessment.

Hubby retains a wicked sense of humour and tries it at hospital to keep up his morale & generally he just gets on with things and we try to make the most of the better days. If this is his lot its a bit rubbish but he could be far worse, like you this is not the life he would have chosen to live and it takes a lot of adjustment - we saw a psychiatrist at the transplant unit who said he has a depression linked with the adjustment/shock of this illness.

Anyway we stick it out and persevere - we are off to the transplant clinic this week for a consultation on Tuesday then the endoscopy on Thursday so we've a busy week.

Keep in touch, its good to natter.

Katie xx

[Bolly in reply to jojokarak]

Hi jo jo. If you are treated at the Manchester Royal Hospital there is a liver support group there for patients with any type of liver disease - if you go the outpatients clinic there you should see their literature and contact details. On facebook (if you are a FB person) there are support groups for different liver diseases depending on what has caused yours (you dont mention the cause in these posts), the British Liver Trust offer support via their website and Liver4 Life a new charity have a support helpline. So in fact there are lots of routes to support for patients and families but you have to look for yourself, your GP or specialist wont necessarily point you in the right direction. As Katie says, the symptoms you have sound like general symptoms that go with liver damage.

[Catfishjumpin in reply to AyrshireK]

Yep, tired is my normal but if I can get on my bike, that quickly disappears because i am circulating blood and oxygen thru my liver of cirrhosis. I highly enourage people to force thenselves up and out at leat walkingeven with a cane or walker but i do understand for some this is not pissible. That day is my only fear. Once I cannot cycle, I bet I do not last long. My doctors tell me I am keeping my liver functioning but there is an end to everything. I have liver cancer now for 2 years and I live in liver failure but I take no medications because I can still get my organs to function. I have so much gratitude, I have no idea where all this desire to live is coming from. I am happy. Heck its my last hours or days or years, I want to be happy. I want to stick around, age 64.

[jimboriley52]

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

[Catfishjumpin in reply to jimboriley52]

I bet xanax will make you sleep but i do not know they will prescribe it. I use it only when necessary. Good luck.

[jojokarak]

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

[jojokarak]

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

[Bolly in reply to jojokarak]

Yes JoJo I am treated at manchester. The last time I was in outpatients there was a box with contact details for the LiverNorth group right next to the clerk check in desk. If its not there when you go, ask! Usually these support groups are run by charities or patient groups so I dont think its practical to expect a doctor to be able to point patients in the direction of a support group when there are 1,000s of different ones for different medical conditions. Its pretty straightforward to find support via online groups such as this one or FaceBook.

[jojokarak]

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