relative diagnosed with sclerosis of the liver - what to expect?

[Mrs_Somerset]

Hi, My Uncle has been diagnosed with sclerosis of the Liver, after having been rushed into hospital last week.

He has not left hospital as yet and all we have heard is that things are not looking good and they are keeping him comfortable and running more tests.

Could anyone please help us understand what this means ?

He is 59 years old, had traveled extensively for work, likes a glass of wine with dinner but does not drink excessively, is a bit overweight (only a couple of stone - nothing too bad) but has always eaten rich foods.

Would this mean that he needs a liver transplant and if so - will he be in hospital until he gets one ?

Could they just give him medication - and if so why have they kept him in hospital so long?

We are getting a bit worried and having googled, we just get so much contradictory info I thought I would ask here ( I am a member of Fibro, Thyroid and PA myseslf and know the people on those forums are very helpful and knowledgeable so hoping someone here can help give us the basics)

Thank-you

M

[AyrshireK]

Hello Mrs_Somerset, your uncle has obviously been diagnosed with cirrhosis or sclerosis (same thing as I learned when I looked it up last night). Cirrhosis is when the liver has become scarred meaning it then reduces in the number of functions it can perform - the liver does over 500 jobs within the body. Sadly once there is cirrhosis this damage is irreversible although the liver can continue to function to varying degrees.

My hubby and I only discovered he had cirrhosis after being rushed into hospital two years ago following a massive upper GI bleed where he vomited blood and it was only after this that they carried out various tests - endoscopy, ultrasound and biopsy which revealed cirrhosis. It came as a complete shock to us as he was previously very fit, never ever drank, no drug history (very little prescribed drug history either), very thin and wiry so no obvious cause .......... we still don't have an 100% idea of what caused it but docs have said auto-immune liver disease.

Some of the tests being done on your uncle will be to try and ascertain a cause of his liver condition as some can be treated with medication leading to a better quality of life or a slowing down of further degeneration.

You'll no doubt be seeing various contradictory things on line because it depends on the amount of liver damaged and what functions it can still carry on completing plus all the other complications that a cirrhotic liver brings along with it & depending on what other symptoms your uncle is displaying will define how serious his condition is.

My hubby spent 3 weeks in hospital (test results took over 8 further weeks to come through) and since then has been having regular clinic appointments, regular ultra-sound scans, regular blood tests and sadly regular endoscopy and banding as his main side effect or additional symptom is portal hypertension in his portal vein leading to varices in his oesophagus. He was referred to the liver transplant team over a year after diagnosis but is not listed for transplant and hasn't been assessed for one but is being very closely monitored.

Some serious side effects which would show the liver really is struggling are portal hypertension, fluid build up in the ankles (oedema), scrotum and tummy(ascites) and hepatic encephalopathy (fluid & toxics build up in brain leading to varying levels of confusion, dementia type symptoms to unconsiousness).

Not being a medical professional I wouldn't like to guess where your uncles doctors will go from here, it all depends on his current symptoms and test results do take some time to come back. I would trust that the medical professionals are doing everything they can for your uncle at present, it is helpful for him to have someone with him when they discuss details - two sets of ears are better than one especially as the illness can lead to confusion and lack of comprehension. I go to every appointment with my hubby, we make notes beforehand and write down all the questions we want to ask then I jot down answers at the appointment meaning we can go over them (sometimes repeatedly) later.

If you are his nearest relative and he wants you to be involved then make sure medics tell you what is going on. I had a week of confusion and upset when no one really told me anything and it made hubby more anxious as I couldn't explain things to him, I eventually wrote to nursing staff and they then included me in everything.

I wish you all the best and hope you get some further details on what is going on with your uncle, he hasn't been in hospital that long at present, tests results do take some time to come through and in the meantime he is in the right place for getting care. Hopefully they'll get to the bottom of what's going on, even the most severe of the side effects can be treated with medicine or medical intervention (draining, banding etc) and if they do assess for transplant and he is stable enough to go home then he will. There are many other carers and patients on here who have been through the whole journey, liver illnessses to cirrhosis, ascites, HE etc. etc. and a lot have also had there successful transplants and are now living life afresh so don't despair at the moment but do ask, ask, ask and later following discharge make sure he sees a liver specialist and push, push, push for appointments, tests, test results etc. etc. It no longer pays to be a patient patient as we found out.

Anyway i'll have driven you to sleep with this extended reply, all the best and hope i've given some positivity.

Katie

[Mrs_Somerset in reply to AyrshireK]

Hi Katie,

Thank-you for your reply and for the detailed information - I know this sounds strange, but I am glad to hear that a week in hospital is not unusual.

My Brother in Law is the closest relative and is also closest geographically but as he works full time and has 4 children under 10 it is tricky for him to juggle everything and he too finds the hospital appointments confusing.

I will make sure that we write everything down and keep asking

thank-you

M

[ancientadolescent]

I have had a transplant and I will tell you of my experience. I was referred by my gp to a consultant at my local hospital. I attended to him for over a year having blood tests before he referred me to a specialist liver unit at St James hospital in Leeds. I attended there for a over a year having blood tests and being admitted into hospital for 3 days. Finally,I was placed on the transplant list and then waited for 18 months until my turn arrived. You can see that it was a lengthy process. I do know that the wait when you are on the list depends on several factors,one of them being you blood group,and also if someone is placed in the queue above you because of their needs are considered to be more urgent. I am not suggesting that your uncle will experience the same lengthy process as I,just trying to describe the process required to obtain a transplant. In addition I can also add that if the problem is due to alcohol abuse,then you will stand no chance of having a transplant if you continue drinking. Finally,the supply of livers for transplant is in short supply and this is mainly due to donors having to opt-in to the agreementfor donation. Please consider asking your family and friends to join the donor list,your gp will provide details of how to do so. I wish your uncle the very best of good fortune.

[Mrs_Somerset in reply to ancientadolescent]

Hi ancientadolescent,

Thank-you for your reply and sharing your experience - it is really helpful to know what to expect and that it will take a while to get him up and about again.

I am not sure what blood type he is, here's hoping it is something common.

Although he is not t-total he does not drink much, but I think he was a businessman before he retired - he travelled a lot for work so perhaps he picked something up abroad. They had a lot of business lunches which are quite rich, but I remember him telling a story of his travels that involved drinking fermented yaks milk, so it seems he is not shy to try the local cuisine

thanks again for the reply,

M