Liver cirrhosis

[Catmeow]

Hi, I am new and I have never joined anything like this before. My husband has alcoholic liver cirrhosis which was diagnosed Aug 2018. He hasn't drank since then as he was admitted to hospital and told another drink would kill him. His consultant advised that he would need a transplant. But he hasn't been offered to go on the list yet. I feel time is running out ashe feels so tired and drained all the time.

[AyrshireK]

Hi Cat, sorry to hear about your hubby.

When is hubbies next liver clinic? It might be worth asking the question then about referral to one of the liver transplant centre's for consideration for liver transplant assessment.

Where alcohol is deemed the cause of liver illness then there is a minimum of 6 months proven abstinence required before someone will even be assessed so as hubby has been sober since initial diagnosis then he might now qualify to be referred. Did he use the help of an agency to get sober? Participation in some sort of support group is often desirable to prove a life long commitment to abstinence which is also a condition for transplant.

Not everyone with cirrhosis will need transplant in the short term, longer term then perhaps yes but need for transplant will depend on symptoms being displayed. Tiredness and feeling drained sadly arn't criteria for transplant (my hubby has both of those having been diagnosed with auto immune related cirrhosis back in April 2012. He was assessed and listed for transplant in 2014 but delisted after 10 months - he isn't jaundiced, has no ascites, only mild HE, portal hypertension controlled. His main symptoms are chronic fatigue, inability to concentrate for long, sleep disruption and such like but these are not sufficient to deem him poorly enough for t/p). To qualify for t/p you need to be poorly enough to require it yet well enough to actually have one.

If hubby is displaying any of the other symptoms of advanced cirrhosis ( you'll find these detailed on BLT website :- britishlivertrust.org.uk/li... ) then do ask for referral to one of the transplant centre's with a view to transplant assessment.

If you havn't seen it yet there are brilliant resources on the British Liver Trust website about cirrhosis (symptoms), transplant, living with liver disease and more. britishlivertrust.org.uk/

All the best to you both,

Katie

[Catmeow in reply to AyrshireK]

Hi thanks for replying. He doesn't see his liver consultant until August. He was weaned off alcohol whilst in the hospital. He was in there for 3 weeks because he was jaundiced, had ascites, he was coughing up blood and his liver was enlarged. He sees an alcohol Councillor at the hospital every 6 weeks and he knows that he can never drink again. He is only 44 and I'm scared that he will die. I will not be able to cope without him. I even check that he's still breathing when he's asleep.

[AyrshireK in reply to Catmeow]

What are his symptoms now? Once alcohol is removed from the equation many people see a huge improvement. You could ask your GP to refer hubby to transplant unit or if you feel hubby is deteriorating then contact current consultant to try and bring appt. forward.

[Catmeow in reply to AyrshireK]

Hi, he's appetite has improved now the alcohol has stopped. His blood tests have shown that he has inflammed blood vessels, low plasma and his blood cells are low so his blood doesn't clot. He is covered from head to toe in a red rash that the GP thinks is lupus, which is more for him to contend with. Everything is such a mess. x

[AyrshireK in reply to Catmeow]

I'd be tempted to get in touch with his current consultant (even in writing) to see about bringing forward that August appointment. Has hubby had a recent ultrasound scan? With a diagnosis of cirrhosis he should have an ultrasound every 6 months.

See about bringing forward the consultation.

Katie

[Catmeow in reply to AyrshireK]

I would love to bring his appointment forward but they might think I'm being awkward or annoying. He had a bone density scan last week, he had his last liver scan in November but we haven't had any appointment for his next one yet. They are checking for hepatitis in his blood now too. You say your hubby has had this since 2012. I think it's awful that they took him off the list. It's so hard to get on it in the first place. It s my fault for reading doctor Google as they say survival rates are 2 years. x

[AyrshireK in reply to Catmeow]

He should be due an ultrasound in May. If an appointment doesn't come you can chase that up as he should have one 6 monthly.

It is ok for you to advocate for your husband. You don't need to shout and scream just ask calmly.

My hubbies consultant has people on his books who have had cirrhosis for 20+ years so the 2 year survival rate issue is something you shouldn't concern yourself with. A cirrhotic liver can exist in two states - compensated where it is coping with the majority of it's functions or decompensated which is the more risky stage and liver is seriously struggling.

My hubby as I said was first diagnosed following a massive upper GI bleed due to 7 varices bursting - at this stage he would have been deemed decompensated. He was in hospital (some of the time on high dependency) for 3 weeks. The next year he was sent to Edinburgh for the transplant unit and one of the consultants there took over his care there. He was listed but over the next 10 months his bloods stabilized and after 42 varices were banded it sorted out his varices issue. As he doesn't suffer any of the 'major' symptoms any longer and is now compensated the risk of transplant outweighed the potential benefits - transplant isn't given purely on basis of quality of life, there are so few organs that it's a life saving operation only. We were gutted when he was first delisted but sadly we see that folks don't always get the 'happy ever after' so it is best just now that he lives with his own liver. We make the most of good days.

Learn about the condition and push 'gently' for the care hubby needs.

Katie

[Catmeow in reply to AyrshireK]

Wow, you and your hubby have been through an awful lot. I've not officially made myself his advocate but he let's me chase up appointments etc.. Unfortunately my hubby was diagnosed with decompensated liver last August.

[Popel]

Hi there,to give you some hope.i was referred from my consultant in Chester in June 2018 (worst year ever) after having a major bleed internally to being listed in November same year to be transplanted February 2019.after being ill for five years previously with so many problems.i know how hard it is for you both but you need to stay positive.wish you both well.x

[Catmeow in reply to Popel]

Thankyou, did you receive your transplant in February? I try to stay positive on the outside in front of my husband, but inside I'm heartbroken.

[Popel in reply to Catmeow]

You’re in the right place.im only 6weeks post transplant and only came to this site post op.but wish I’d of known about it sooner .because. At times it’s a lonely road on your own.there are a lot of people here who been to hell and back but have come through it.im welling up thinking about it.me and my partner included.we are made of stern stuff and I do wish you well. being positive is the key!!

[Catmeow in reply to Popel]

All the best and I wish you well for your recovery

[Owlie]

Hi Cat, welcome to the forum! So sorry to hear about your husband, I hope he soon feels better! I joined in September when I had a shock and was stunned by the support I got/get on here.

I’m sorry I have no experience of your husbands particular illness but there are plenty who can offer you support with more knowledge than me. Wishing you the very best, hang in there, Owlie x

[Catmeow]

Thankyou so much