Liver Cirrhosis

[Sjade]

Hi All,

I would like to share my awful experience with watching my Mum suffer and pass away with this horrible disease, and hopefully get some answers as it all happened so fast with no warning.

I'm 26 and Mum was 60, fit and healthy (or so we thought) she had no symptoms leading up to hospital only that she had caught the flu and was unable to recover from it. After two week dosing up on cold and flu tablets she turned yellow which is when the alarm bells rang.

An appointment with the GP followed with hospital admissions, the liver test came back at 900 which I know is very high! She was taken into hospital October 24th and passed away on November 30th. All I can say is what we experienced was a living nightmare and it is scary to think how someone can be life threatening ill and not know of about it?

Mum had all the symptoms linked to chirrosis in hospital and everything happend so fast I don't think the consultants knew how poor the liver was. The acseties caught an SBP infection, which caused septic shock, kidney failure, and HE. All in five weeks we watched our mum go from our normal mum to the complete opposite where she had to be put into a coma in ICU.

My question is how did this happen so quick and why???? The consultants never seemed to have the time to explain things to us so we were left with questions as well as dealing with the shock of it all.

The GP said it was caused by alcohol, however our mother wasn't an alcoholic, she enjoyed maybe one beer a night but could that have caused all this?? How much do you have to drink for it to kill you? I am now worried she was drinking more without us knowing bit we are a very close family so surely I would have known ??

I have not only lost my Mum, but my best friend who now will got get to see me walk down the isle or meet any grand children

Thanks for any comments in advance xx

[Hidden]

Sorry for your loss, I totally understand your search for answers. It is possible that someone can have advanced disease and not show it. I feel the doctors are jumping the gun a little bit here in insisting its alcohol, unless of course you mother was drinking alot secretly and confessed to the doctors.

The flu like symptoms were likely the Liver issue which was then made worse by the pills. "most" people can handle quite a bit of alcohol and it usually takes decades to cause end stage disease, my father is 72 and drank 3 or 4 pints everyday sometimes more and was drinking very heavily when working abroad for 7 years in his 30s, he has no Liver issues and has just had tests. There are some people who never get Cirrhosis even on 200-300 units a week, there are some unlucky ones who can get it on half a bottle of wine a day, but that is rare and there is likely a genetically weak Liver issue involved.

There are also auto immune conditions that arent always straight forward to diagnose. Non alcoholic fatty Liver disease is another possible cause. Hep-c,b etc.

The 900 Liver test is likely the enzyme ALT, this indicates acute inflammation of the Liver which isn't really consistent with drinking 1 pint a day. Alcoholic Cirrhosis is usually caused by low level inflammation for 20 - 40 years.

I think you need to get some more answers, there could some issue involved here that could be passed on to you through genetics, I would advise you to get yourself and family checked out just incase.

[briccolone]

That does sound like a nightmare and you have my sympathies. I'm not an expert on cirrhosis but there are plenty of those who are on this site who can explain some of the procedures. However-what I do know is you don't need to be an alcoholic to have cirrhosis as ralph2014 has explained-you don't even need to drink alcohol to have cirrhosis. What is absoutely true is that if you have cirrhosis for whatever cause you need to stop drinking completely or you may go downhill very quickly. it sounds like your mother had undiagnosed cirrhosis for some time and unluckily had no symptoms or if she did-kept them quiet. Drinking even one beer will do a lot of damage on a cirrhotic liver. Cirrhosis can even go unoticed on standard liver tests although I understand it's rare.

I doubt very much whether these replies will be of much solace but there are lots of people on this site who will understand your your bewilderment at this sad time.

I visited an old friend (he's 64) of mine in hospital recently who has liver failure after drinking on cirrhosis for years-he's been in hospital for 10 weeks now and lucky to be alive-he now faces a long road to recovery if he indeed he does recover although there are some nice stories of people on this site who have recovered and keeping well.

It's a real shame your mother's not one of those stories.

Best wishes

k

[susieanna]

How tragic and how quick; i am shocked at the speed of what happened to your mum. I don't know how often you saw your mum etc; im wondering if she may have had a few symptoms but not wanted to say anything eg did she live on her own. I did not know myself that some people may not even get symptoms until its at a late stage; which is very frightening. Yes i expect alot of GP's would put it down to alcohol even though it might not be.....i would have thought you would have noticed if she was drinking more heavily.....though some people are very good at hiding things. Either way, none of this brings your poor mum back and it must be a terrible time for you and your family.....an autopsy would have perhaps given more details of the exact cause/ what was going on? As some people have said everyones body is different. Some people can manage to drink quite alot but not get cirrhosis...whilst for others its different....and they are not necessarily even heavy drinkers. As i read and find out more on this web site....its certainly very frightening and tragic....an awful, awful disease. I hope at least you are somehow able to get some answers to which you are entitled. xxx

[jbrking]

I am so sorry to hear about your loss. It is such as shock as I lost my father to cancer like that - he felt a little breathless and he thought it was his heart as he had a bypass 5 years previously (aged 60). Doctor did tests and said he was very anaemic and may have an ulcer bleeding. Turned out he was riddled with stomach cancer and it had already spread to his liver. Died 4 weeks later at aged just 65. I had already lost my mum years before in an accident so it hit me really hard. Lost everyone in my life.

As Ralph says it could have been hepatitis or NAFLD - the latter I have had for 7 years (I'm 47 now). I hardly used to drink as it never bothered me. I'm talking one or two drinks every 6 months if I happened to go for a night out or maybe a glass with my Christmas dinner! Being a single mum I didn't really go out much and drove to work every day so I never drank. My blood results are similar to that of a heavy drinker and I had to convince people I didn't drink! So ALT readings can be high for other reasons. When the liver is under attack and not coping it gives out the enzyme ALT and that is detected in the blood. I can only assume in your mums case that her liver may have been not 100% at the time she became ill and it didn't cope. Once the liver stops working there's not much that can be done quickly to help.

The visit to my doctor was routine and I mentioned that I was extremely tired but I put that down to being a single mum, working full time and having just lost my father I was dealing with his estate - he had his own car repair garage and a house to sort. And I had put on a little weight but wasn't eating more. But by no means overweight.

Luckily my doctor decided to do a complete series of blood tests including ALT and a full lipid profile (fats in blood). My results came back quite high- over 200 ALT (normal range is between 5-40) and high Gamma GT and triglycerides of about 20 from memory (they should be around 1.5 for a woman my age). Nothing life threatening but now on medication for life. My doctor explained that it's Non alcoholic fatty liver disease. The next stage would be scaring/stiffening of the liver and then chirrosis. But not everyone moves on through the stages if it is well managed and I'm lucky mine was caught very early on and I've managed to stay fit and well for last 7 years and hopefully will continue. My liver is twice the size it should be apparently but I get no pain. My diet is now healthy although it wasn't too bad before!

When we feel a little under the weather or have a little pain or are tired, we tend to put it down to something else. Maybe your mother had a few little symptoms but thought it was cos she was tired from doing something else or just put it down to getting a little older.

I do feel for you because of the shock of losing your mum so quickly like that. I've certainly experienced that!

My doctor is wonderful and explains everything. I have blood tests every 6 months (used to be more but my results have been very good for a long time now)

And I get regular scans. She said that at some point if my son needs a blood test for anything (he's 20 now) he should get a full lipid profile done just in case and keep an eye on him. The liver is a very important organ and very precious. I'm lucky my doctor knew about liver problems and has a very keen interest in me.

I think If you ever need a blood test ask for a lipid profile/liver test to be done. Just to keep your mind at rest too.

The pain of losing your mum will lessen over the years. I can still shed a tear for mine from time to time but you learn to cope. Take care xx

[Sjade]

Thank you all for your comments. It is nice to hear about the success recovery stories and I wish you all the best, also the ones where they have been caught early, it is great to hear the GPS have been on the ball with checking for liver functioning.

Yes my mum was on her own, although I was living there two days a week and at my boyfriends for the rest of the week. We are very close and on the days I didn't see her, I would call her twice a day. We have a hug family so my sisters would be in touch with her as well as her other siblings.

Whilst we were clearing the house out last night, we found an empty vodka bottle hidden in the cupboard which suggests she was hiding something. I can't get my head around this as she never appeared drunk or had any reason to do so. I suppose I will never know the answers and nothing can change or bring her back.

I wish you all the very best and I hope 2016 will bring you all good Heath and happiness xx

[Bolly in reply to Sjade]

There may have been some other underlying condition which low level regular drinking made worse, you just don't know. Many women of your mothers age have been infected with the virus hepatitis C without knowing. When your mother was young there were not the same checks on donated blood and women given transfusions connected to childbirth (think Anita Roddick of the Body Shop) unwittingly received contaminated products. Hep C can cause very slow but increasing damage over 20 to 30 years without the person feeling unwell, coupled with alcohol even in small quantities it can cause cirrhosis and liver failure if not treated.

Understandably this is a tremendous shock but you may never find the reason, hopefully rather than trying to find things in your mothers past that make you feel uncomfortable, try and remember the good things and celebrate those.

[Hidden in reply to Sjade]

morning

as suggested Liver issues can be complex and have dual or even triple causes. The single vodka bottle may not mean much as you have stated you spent alot of time with her, I dont think she could have been drinking that much to be honest.

Please get yourself checked out, a simple Liver test and complete blood count is easy to do and should be done once a year not just for the Liver, but your general health. You will be surprised by the avoidable health issues that occur to people because they didn't get a yearly check up and end up dying too young.

[Raksha1964]

Hi, I am so sorry for your loss. We can totally understand where you are coming from, but in our case I was in your mothers condition. I collapsed on the Monday night, taken to our local hospital, transferred to queen Elizabeth the following night. The weds morning my family was told had suffered acute liver failure & had 48 hrs. I was luck my partner got the call early hours of fri morning to say they had a liver & they were going to transplant. I was 49, do not drink & never have. My liver was sent to Edinburgh for specialist testing & all tests came back negative, no answers it just failed. Iwe like yourselves wanted & need answers, but there are none, occasionally, but very rarely it can happen. I know this probably won't help you in your terrible loss & things you witnessed. I am a year post op & have driven my team made for answers but in my case are trying to accept in my case there is none, it was driving me mad mentally along with everything else. If you need answers, please keep trying, until they say 'we're sorry their is no answers'. I hope you find the answers to need.

My thoughts & pryayers are with you at this difficult time xxx

[Wass71]

Hi, I'm so sorry to hear your sad story. I know how devastating liver illness is as I lost my sister in 2010. She was admitted and died within 3 weeks, having been put in a medically induced coma. She had catastrophic bleed and once this happened for the third time she eventually had an mi. My sister was an alcoholic, she was only 41, she kept it from many people. Her Dr didn't know, she had many friends she didn't tell. She was always well presented and kept an immaculate home.

However although people who drink are very good at hiding it, it doesn't mean your mum was drinking loads. It is a fact that women can't drink the same amount as men. It is possible she had an underlying condition as others have said. I know how shocking it is when someone apparently well dies so suddenly. The not knowing why eats you up. I would strongly advise you to make an appointment with your mums main consultant when she was admitted. Phone the hospital and ask to speak to the DR's secretary. You can ask for the Dr to go through the medical notes with you. As next of kin you are legally allowed to see these records. They may require a request in writing for legal reasons. Most consultant s are happy to go over things with relatives when the death is unexpected and sudden. It is worth mentioning you are not questioning it for medicolegal reasons and just because you want to understand what happened. Also if you aren't sure about the drinking, as others have said you may want to rule out auto immune or hereditary things or virus things like hep c mentioned by others.

I hope you are able to get some answers so that you can mourn the loss of your mum.

Best wishes, especially at this difficult time of year.

E x