British Liver Trust
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Not sure where we go from here

My 28 year old son is in hospital waiting for a liver biopsy has extremely distended stomach and they have said he has a cirrhosis of the liver ... I’m angry as he hasn’t touched a drink or drug in his life 😩

He had emergency admission in December where he was treated for acute gallbladder infection extremely anemic and a chest infection he needed a blood transfusion n 2 platelets

I have so many questions he was ill best part of kast year .... we thought that once the gallbladder was treated he would get back to normal ! Now 4 weeks later we are back in hospital being told liver issues?

I can’t get my head around it ...why how what is pumping round my brain ?

Can you help me understand the why ? How can it get damaged so quick ? Or has it been getting worse when the had him on steroids which masked a problem?

Sorry for rambling but I need to know to help us understand what is happening ?

Thank you

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Oh my God, I am feeling your pain. I hope someone has some answers on here for you. I have a son 31 and twin daughters. None of them drink or do drugs. O too would be devastated. I was the silly one for 5 years or so. It may not be as bad as you think as from what I've read on here some things mimic others but I'm no expert. People on here have alluded to diagnoses that aren't as bad as what was said initially and if they're not as bad (he hasn't had the biopsy yet) the person can recover ftom the liver disease. I've read this. Please, someone with more knowledge than I, please allay this terrified mum's fears. I sincerely hope your son will be alright. It's easy to put myself in your shoes with my own three who don't drink, nor does their father. I'm hoping for a great outcome for your son. My love, Shuu.

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Thank you so much for replying I’m totalky at a loss what to do for him it’s not like they little and you can use the magic sponge, I try to be upbeat for him... he was due back to work on 5th Feb after a horrible year We thought the admission and treatment was the end of it .... now I don’t know 28 but he still my little boy and I am now trying to find out all I can to support him..

His dad shouts about the whys but all that does is cause tension!

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Yep, can understand.My 31 year old has always been (as my girls say, the golden child) my little boy. He's not married and means the world to me. Mothers & sons. Dads dont get it. Yes, I'm the peacemaker when the tension starts. I just hope you get an answer. My husband, an intelligent man is very dumb (hate saying that) but when I wsd worried about myself said wait and see what docs say, but I csn tell thst you want answers now and husbands seem to cause tension in this way. Ive had gallstones for 29 yrs & wonder whether this stuff is interrelated but I'm no doctor. I should have had mine out. Just noticed Ayrshirek has responded. She knows heaps. Have read her on the forums. Can't see what she's said but will be good advice. I guess ask questions. Keep me posted, ok and Im thinking of you. It will work out, Im sure. Shuu xx

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Sorry to hear about your son - its always a massive shock to find out you or a relative have a serious illness which comes out of the blue. In our case it was my then fiance (now hubby) who was a seriously fit and active long distance walker also tea total - no drink, no drugs, no tattoos, no obviously risky behaviours other than walking thousands of miles every year & wham back in April 2012 he starts throwing up blood and goes an awful deathly green colour. On emergency admittance to hospital we got told he had cirrhosis. Like you we have the string of questions, chief one even today being why? In hubbies case he has a diagnosis of Auto-Immune Cirrhosis - they believe he has had auto-immune hepatitis (liver inflammation) at some point in the past but it has gone dormant or burned out but left the serious damage behind.

They'll obviously need to investigate your son very thoroughly to look at whether this is a knock on effect of the earlier gall bladder issue or does he perhaps have one of the auto-immune conditions that affect the bile ducts (such as Primary Biliary Cholangitis or Primary Sclerosing Cholangitis). The fact he has been poorly for a year probably indicates this has been on ongoing problem with the gall bladder infection just being part of it. One of the major treatments for liver inflammation is steroids so perhaps him being on steroids tamped down any liver inflammation and it has now flared or restarted.

There are many possibilities with the liver, there are genetic conditions, viral conditions, auto-immune conditions and even conditions to do with lifestyle (even in those who are seemingly healthy). Cirrhosis can be a silent illness and can creep up even before symptoms show.

You just have to trust that your boy is in the right place just now and that medics will get to the bottom of what is going on, he's probably going to have to have a raft of further tests. If he isn't being seen by an actual hepatologist then request that he is referred to one or to one of the major liver centres. If he had all the previous illness but the liver issue wasn't identified I wonder if it was going on then and been missed or whether it is something more new. If he isn't seeing a liver specialist then he needs to.

Best wishes

Katie

BTW. My hubby got out of hospital after 3 weeks, was listed for t/p but delisted because he stabilised and in the grand scheme of things is doing well so even a diagnosis of cirrhosis isn't all doom and gloom and your lad has the benefit of age on his side.

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Thank you , I have told him his dad and I will come to every appointment so as a family we understand what he is facing

He was in his prime at xmas 2016 we thought 2017 n the gallbladder issue was it even celebrated on xmas day as he had bone marrow tests done as his infection levels were so high they feared the worst so to think gallbladder was me saying it’s done and dusted

Ask him what he wants to play football again on a Saturday as a mum it kills me as he so doesn’t deserve this x

Glad your hubby is doing well x

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Don't get me wrong hubby is still very much limited by his condition and still wakes up every day wanting to do stuff he no longer can and questioning why but he is at least still here and that wasn't a certainty back in 2012. Hubby sadly can no longer work or drive and has a great many limitations with energy and symptoms to do with his advanced cirrhosis but like I say at least he is still here and is being closely monitored in case his need for t/p re-emerges.

Do support your son every step of the way because there will be a lot of med speak to come and many tests and it is necessary for the whole family to be in on it - I certainly attend everything with hubby . The urgent thing will be a diagnosis and then you know what you are all dealing with and then they will be able to discuss a treatment regime.

Best wishes

Katie x

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Katie you have answered one of the questions in my mind regarding Work he has been on and off work for 8 months he was due to go back a week tomorrow but I will organise another sick line for 4weeks by which time we should have a why diagnosis ... I didn’t want to ask you if your husband was still working ...felt it too personal but can I ask why is he unable to drive ? My son has a car x

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Hubby has issues with concentration, staying on task and chronic fatigue, he has a terribly disturbed sleep pattern and just loads of stuff that affects cognitivie function . He decided for himself that it was too dangerous for him to drive as he just can't concentrate plus he stuggles comprehending instructions etc. He has symptoms of mild hepatic encephalopathy which is another condition that arised due to cirrhosis (build up of toxins affecting brain function). He is treated with lactulose and rifaximin and thankfully hasn't progressed into more serious issues with HE.

Hubby receives both Employment and Support Allowance (support group) and Personal Independence Payment (enhanced daily living and basic mobility) due to the issues he has now with his illness.

Katie

He can't work any more due these same issues - he used to be a welder in heavy engineering.

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Good on you both, good advice from Ayrshirek to help worried mama bear. Wishing you both well and that your boy will have some answers and good health after the tests and follow up. xx

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I will keep you updated xx

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Thanks, me too. Our son is housesitting our home and catsitting while we're on holidays and I'm always telling him (texting) to be careful driving etc., etc; he's seeing doc about a sore throat that he's had for a few weeks tomorrow but I can't get your son out of my mind: There but for the grace of God go I. These unexplained circumstances you are going through could happen to any of us with our kids, our good kids (albeit adult kids). I don't normally pray except in dire circumstances but will pray for your boy tonight as mine is only 3 years older and you must love him as I do mine so I have a little understanding of what you are going through and it would be hell at the moment. My love to you. Shuu xx

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Hi worried mum.

Unfortunately, sometimes with liver disease or liver damage of any sort its not always obvious its there or what is causing it, especially if there are other things going on at the time. Indeed, for a number of liver diseases a formal diagnosis can only be determined following a process of illimination. Its a case of finding out what its not before identifying what it is. It can therefore be a lengthy and frustrating process at times.

Hopefully they'll be able to identify what it is with your son quickly and hopefully they'll be able to halt any further progress. However, if a transplant is needed, that too is not the end of the world, but it may not come to that.

I do notice that you highlight the tensions this seems to be causing. That is one thing that you do need to try and resolve. There's no blame here and its no ones fault. Its just something thats happening and you have to deal with. Whilst I appreaciate it may not be easy at times, try not to get too frustrated with each other.

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Thank you Kristian you are right I said to my husband beng angry won’t change anything so my son has me clucking like mother hen and his dad being loud!

We need the diagnosis and then what action they will take your right sometimes things just happen and it’s perspective x

Thanks for replying

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I do hope the diagnosis is straight forward. Do though be prepared for travelling up some blind alleys along the way.

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Don’t panic “cirrhosis “ is not only caused by alcohol or drugs, once the biopsy shows what your dealing with it can be treated, livers have an amazing ability to repair. So if the cause is treated their is a good chance of recovery.

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Thank you x he has went thru the mill both him and his younger brother have a genetic immune condition called Brutons disease.... very poorly till diagnosed at 3 and regular infusions he had a healthy childhood teenage years it’s the past 13 months he has had a series of issues

He didn’t fit into gallbladder infection category yet his is now extremely damaged and this liver issue has completely thrown me x

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Who treated him as a child? It might be worth talking to them about what’s happening now, as they’l Know your sons history.

Keep me posted

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His consultant with your sons permission should be able to explain all write your questions down before you go because cirrhosis not mean it’s due to alcohol

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Thank you we have been lucky and had same immunologist consultant for 25 years he has been very involved

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My husband's liver doctor told us the vast majority of people with liver disease did not get it from drinking and that is one of the biggest myths that the public has been allowed to believe. My Mother's Mother died of cirrhosis of the liver and never drank.

It does everyone a disservice that the medical community and media seem to prefer to blame it on over drinking or drug use.

I wish you and your son the very best going forward. Mary

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I totally agree the perception is pretty bad isn’t it ... he is home on a pass waiting for biopsy appointment and they also want to rule out hepatitis E ( I didn’t know it exisited !) thanks for your reply

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Sorry your son is going through this. My hubby has cirrhosis of liver also. Not from drinking. He has cancer . None curable. Was in remission for 9 months. Back now but the chemo we did at first destroyed all but 20% of his liver. He has decided no more chemo. Can't have liver transplant because he has cancer. I pray your son gets better. It is very hard seeing a family member so sick. Hang in there. He will need your support

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They gave him a barrage of tests in December as his infection xoubtbwas ofd the scale bone marrow etc so we kinda thought once gallbladder mentioned we were on the road to normality for him !

I am so sorry you are going through this and thank you for taking time to reply x

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wee update on my boy cub - he was sent home on a pass monday and was going up daily for blood tests, however the fluid was getting worse and he was in pain, they kept him in wednesday and drained over 5 litres of fluid from is stomach .... he got discharged yesterday today is his weekly immunoglobulin infusions but this time within his immunologist office so hopefully he might have some more answers for him.

so basically all being well the medical side is......

infusion today

blood test monday - then fingers crossed he can relax until biopsy on Friday. I am going to get his sick line extended for another 2 weeks to allow him to hopefully have some answers and recover from this latest set back - he has ascites and odema swelling too.

thanks again :)

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I feel so bad for your family and of course your boy- they will always be our boys no matter how old, mine 31 and single but out of home. Keep in mind that lots of ppl reading this update are thinking of him, putting themselves in your shoes coz we love our boys and can, if not empathise then sympathise. Hopefully in the office you'll get the answers soon.

Love Shuu xx

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wee update

he had his transjuglar biopsy yesterday, they gave him more platelets before it as his blood count low... he hadn't expected it to be as a big deal as it was ( you know the whole medical staff present ect but its done now, they kept him overnight and fingers crossed we can pick him up this morning ..... he is getting different tablets to help with the ascites he has. We then wait for his appointment both mama and papa bear going as we need to know as his support what he / we are facing

27 almost 28 but I know he needs me now even though he is very low and not really saying much x

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