British Liver Trust
14,093 members6,959 posts

Liver disease +? - fearing near death of a great friend

Hi I'm here because I'm very worried about a very dear friend whom it looks is dying very quickly. She went into the hospital 2 months ago and was diagnosed with a liver disease but told it was curable. She always used alcohol but was very heavy several months prior to hospitalization. She looked pretty good and went to physical therapy hospital 3 weeks ago. She was there only a week and then transferred to ICU because her condition became much worse. According to the infectious control doctor the liver is producing holes and so are some of her other organs. They removed her gallblader and several lymph nodes but can't find the cause. Her ankles and feet are swollen, stomach is swollen, high ammonia level, for the last 2 weeks she is not coherent - awake but most of time knows no one. I'm afraid that the loss of her memory is due to her liver failure and toxins produced in her blood system and she may never recover. Any suggestions would be very much appreciated

22 Replies
oldestnewest

Sorry to hear how poorly your friend is.

Many of the symptoms being described are sadly those of advanced and decompensated liver cirrhosis with the stomach swelling and feet/ankle swelling likely to be ascites and oedema due to fluid build up and the toxin (high ammonia) levels leading to symptoms of hepatic encephalopathy which is where the confusion and memory issues start to present.

We do have members who have been successfully brought back from this serious level of liver disease and some have managed to remain alcohol free for the required period to allow assessment and successful listing for eventual transplant.

BUT unfortunately we do have members who have also watched loved ones pass away from such advanced liver disease. Your friend is sadly very, very poorly at this stage and the liver is very seriously struggling - hence the need for ICU care.

Stay strong through this yourself and look after yourself because if this does go the wrong way for your friend it sadly will not be pleasant to witness.

She is in the right place and hopefully she can turn a corner, there are treatments for ascites, oedema and HE and hopefully they can turn her around but do be prepared as it might not (sadly) work out.

Katie x

9 likes
Reply

Katie is very knowing and always puts good advice even has sent me same link 4times as me confused state so hang on in there were all think inking of you

5 likes
Reply

Do you know why, since the liver can't function to remove the toxins, why the patients aren't put on IV until the cause of failure is diagnosed? Apparently the alchohol is only 1 of the reasons her liver has failed.

1 like
Reply

thank you for your response!

Reply

Regards your question above about IV. I can't really answer that and I don't know what sort of IV you mean, I know they often do give vitamins and such like in IV suspension to help with some symptoms especially when the patient is also undergoing draining of ascites.

Once the liver gets to this stage (regardless of cause) there is little that can be done to treat the liver and it's more a case of dealing with the various off shoot conditions that now arise due to the damaged liver. It would be good though to identify exactly what has caused the issue then for the future it can be avoided or treated (like leaving out alcohol altogether) or treating other underlying condition.

As others have said HE can be treated with Rifaximin and Lactulose or an enema if extreme. Draining of ascites can happen with a procedure called a paracentesis and further treated by water tablets / diuretics.

The fact your friend is still being investigated and not totally written off and being given ICU care shows hospital is still doing their best for her. Like I said we do have forum members who have been this poorly and have come back.

Katie

3 likes
Reply

My biggest concern is about the toxins in the blood and permanent damage to the brain. The doctor for infectious control said he saw holes developing in the liver but this doesn't seem common and her condition has gotten so much worse in last 3 weeks. It seems like they don't know if she has a bacterial or viral infection on top of her liver damage. Why wouldn't they use dialysis to cleanse her blood and give the liver a chance to recover? I very much appreciate this forum and your help.

Reply

Dialysis is for the kidneys, sadly there is no such external filtration support system for the liver, hence, the reason liver transplant is the only possible treatment left for advanced liver disease whereas kidney patients can be left 'ticking along' often for years with the support of dialysis.

Rifaximin is an antibiotic used to help treat the toxin build up together with lactulose which helps to eject them from the body attached to faeces and if need be an enema. There is little else they can do to help 'flush the system'.

Obviously they need to find out if there is also an infection going on. Sometimes the ascites fluid can also become infected leading to peritonitis - I don't know what these holes are ........... never heard of that before.

Katie

Reply

As you can tell, I'm really grasping at straws. The doctors are sure there's an infection going on but can't identify it. While she was in the hospital, she had 2 dogs die suddenly, 1 was old and the other young. Her brother did state that he knows there was feices - sp in the house along with mold from water damage. As far as I can find out, the dogs did not die from being malnurished. I fear that she will not become stabilized before she can get a liver. Thank you so much for your feedback.

Reply

I can totally get where you are coming from in trying your best to help your friend. I went through the same thing when my then fiance (now hubby) was rushed into A&E with a massive upper GI bleed to then find out he had advanced cirrhosis. He is life long tea-total and to say it knocked us for six to find out he was severely poorly with probably the last thing you'd have though literally floored us both. I searched and searched for possible reasons - was it the fumes and metals he dealt with in his career as a welder? Was it medication induced? In the end doctors plumped for a diagnosis of auto immune cirrhosis. He spent time on the high care unit and we've subsequently been told he came close to the end through the blood loss etc. Thankfully he has never (touch wood) been as poorly as your friend but I do know that searching and desperate feeling.

Sadly when the liver isn't working good it has a knock on effect on infection control. It's the most wonderful organ doing around 500 different jobs within the body, it's amazing in the punishment it can take before beginning to struggle but once it does start to struggle it starts to drop off the number of functions it can continue to do & one of these is fighting infections.

It's a great shame too many people give it such a battering without realising the knock on effects of what happens when it goes wrong.

Have a read at some of the British Liver Trust information on the liver if only to educate yourself a little more on this amazing organ.

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/li...

There is sadly no getting round it your friend is very poorly and I hope doctors can get whatever is going on under some control.

Thoughts with you, Katie x

2 likes
Reply

Thank you. I am a little encouraged. Yesterday she was somewhat coherent and the doctors are trying a new drug they feel will help.

Reply

You sound so calm and concerned she needs you now you sound so true to heart and be there I have no answers but your not alone on this path we all walk together .x

6 likes
Reply

Lactose and Rifaximin will sort out the HE issues quickly. A stomach tap and fluid tabs should also be given to get rid of the swelling. She needs a camera down her throat too see if there is any internal bleeding. They can tie up these veins at mothe same time. Then they should concentrate on the liver itself. She will need blood tests to see if the new drugs are not making her liver worse. Also, to eat small but regular Meels and cut out the salt ( I still have trouble with that one) and no alcohol.

I’ve been through it myself.

Cheers,

Brett

7 likes
Reply

Hi Brett11. I'd just like to echo your reply, and say that I have too. Small consolation for srhathaway, but it shows that there is some chance.

2 likes
Reply

They loaded my friend up with drugs to see if they could stop the infection but had to take her off yesterday because of the impact on the liver. Obviously, she has had no alchohol for over 3 months. The doctor said yesterday that they have to find something very soon! Thank you so much!

Reply

Thinking of you both in this's time of dispair love to both of you xx

Reply

We are truly at a loss. The doctors say the liver is damaged but it isn't cirhossis. They have the top doctor from infectuous control who only takes the most severe cases. He states he's never seen a disease like this. They are and have been giving the highest doses of antibacterial and antifungal medicine and tried to target some areas with concentrated doses. Today she had a PET scan, because it's in her lymphnodes. My friends and I believe he has to be related to the sudden death of 2 of her dogs in her home and the black mold that was found prior to her being hospitalized. Her brothers do not believe this to be the case. I'd like to thank everyone for their concern and comments.

Reply

I'm sorry to hear about your friend. My brother was diagnosed with decompensated liver disease, his varises burst, they were banded twice whilst he was in ICU, but he had to have a tips procedure done or they said he wouldn't pull through. Luckily it worked but then the following year he was in hospital a total of 23 weeks. he suffered terribly with encephalopathy, had 18 litres of fluid drained from his stomach, had sepsis twice whilst in the ward, we had been called up to the hospital 3 times. But they never gave up on him, neither did we and he is a fighter. He's been sober about a year and a half now and has been on the transplant list for over a month now and had a call a few weeks ago but unfortunately the liver wasn't perfect enough for them to transplant. He's in his early forties and it's been a long process getting him to where he is now. There were times I didn't think he would be. The hospital have been brilliant and they were willing to take a chance with the tips procedure or he wouldn't be here today. Im sure your friend will be getting the same care, and they'll do all they can. X

3 likes
Reply

My friend is in her mid 50's. Did your brother recover memory loss. It really doesn't look like my friend will last long enough to be considered for a transplant. Thank you for your response and your brother is very lucky to have family that has helped him through it.

Reply

So sorry

Reply

Bless you and brother that's lovely you being close and sorry u had the shock of no match

Sincerely my love to you both and goog as it can be health

Reply

Yes he did get his memory back tho sometimes he is a bit forgetful and I'm glad that he's got no recollection of most of the periods of encephalopathy or the worst periods of his illness because it is really upsetting and scary what the toxins can do. He's 44 this year and up until the internal bleeding was working full time. We're hoping that if he gets a new liver he will get a second chance at life. His marriage broke down during all of it last year and he's had an awful time but his condition is stable at the moment and we're just taking it a day at a time. He gets low at times but manages to pull himself through it. William never thought that he'd get a chance of a transplant but his liver doctor put him forward for it and was rejected the first time but was reassessed and put on the list 3 months later. I do hope your friend keeps fighting and pulls through, we never gave up even when it looked like the worst was going to happen.

2 likes
Reply

You never give up just try try pink song I get that confused state can't pick phone up telly has to be off no internet in room alone it's weird I'm just being over that again

Reply

You may also like...