I was diagnosed with decompensated liver cirrhosis after a hospital admission in May 2024. I had a seizure at home ( never had one before) had a further seizure in the ambulance whilst on my way to hospital. I have no recall of any of this. I was given steroids whilst in hospital which led to me having steroid induced psychosis. This was not pleasant for myself or my family. I was given a brain scan and the steroids were stopped. Scan came back clear and I was discharged from hospital after a two week stay with a diagnosis of alcohol related cirrhosis and was told to eat plenty of protein and avoid food with a high salt content, I was quite unwell when I returned home, extremely fatigued, no appetite I was unable to speak and couldn’t retain any information.
My mum attended all my appointments with me, ultrasound scans, an endoscopy and lots of blood tests.
I recovered slowly and began to feel ‘more like myself’ I researched liver cirrhosis online and had lots of questions ready before my appointment to see a liver consultant in September 2024.
The consultant showed me my blood results on the computer screen that appeared like a graph. He advised that my bilirubin was now down to a normal level and that essentially my liver function was ‘normal’.
When I asked the question regarding a liver transplant and participating in any upcoming trials available, he advised that I was not eligible due to the cirrhosis being caused by my alcohol intake.
and advised my life expectancy would be around 10 years. The consultant was quite blunt and straight to the point.
I left the appointment feeling quite shocked and deflated. I joined a gym in November 2024 and thought I had better try to keep as healthy as possible. I swim four/five times a week, practice yoga and walk every day. I am 56 closer to 57 and live in Lancashire England.
My question to the community is should I have questioned my eligibility for a liver transplant. From what I have read it appears to be a catch 22 if I am healthy I do not meet the criteria for a transplant and if I am unhealthy due to liver related problems I am deemed not eligible due to ill health.
Any advice or guidance from anyone who has experienced this or has undergone a liver transplant would be greatly appreciated.
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Resinfreak
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Hoping someone who has been through this answers but I believe in some countries you need to have been sober for a period of time to not be ruled out for that reason. Also people can live a lot longer than 10 years with cirrhosis if they take care of themselves as you are doing. I would stop thinking of your life as limited and keep living healthy. You should be having regular checks (every 6 months I think) for liver cancer. Wishing you the best!
Hello there and welcome to the forum. Congratulations on heeding the warning from your hospital admission and getting yourself more healthy and sober ............ a massive plus in your favour.
Transplant situation - if your liver is now stable with normal blood results and reduced symptoms then you are not transplant needy. However, if you did start to see a decline in your health with the liver tipping from compensated (which is how it would be described now) to decompensated (where it is struggling to even do it's most essential to life tasks) then you could be referred for a transplant assessment. The fact your disease was alcohol caused DOES NOT debar you from transplant - NHS statistics show that the highest number/highest percentage of transplants in every UK transplant centre go to folks where alcohol was the cause of the damage.
What does happen in this scenario is you have to be proven to be abstinent at time of referral and engaging in sobriety support - during the assessment you will have chats with various folks like social workers, addiction services, psychology etc. who explore drinking history and any likelihood of relapse - purely because of the shortage of organs they have to make sure any one receiving the precious gift of transplant is going to treat it properly and in effect not waste it.
The assessment is very thorough and looks at the liver health - is transplant the only means of treating the liver? Have all other options been explored etc.? If you are liver 'ill enough' then they need to make sure you are fit enough to actually undergo the operation and the recovery period and also check you don't have other issues that may make transplant not feasible.
So, they do a very thorough CT or MRI scan to check you have no cancers outside the liver because an immune suppressed person can't fight these.
They also check your lung health and heart health as the anaesthetist needs to be sure when they put you under your body can cope with the stresses of intubation and a long period of general anaesthetic.
Lungs need to be healthy as you are on oxygen for a long time and this can lead to lung issues.
Dieticians check your muscle mass and nutritional state as you need reserves in order to get through the op. safely and recover. (My hubby lost a stone in hospital during the 18 days he was in for transplant and recovery).
There are lots of discussions about social support, medications, mental health and more.
At the end of the transplant assessment a multi-disciplinary team sits down to discuss all the results and they make the decision as to whether or not you (a) need a transplant and should be listed now (b) you may need a transplant in future but there are issues that need addressing to get you fit enough (diet etc.) (c) you don't need a transplant yet (d) sadly there are too many factors that mean you can not be listed.
As you are compensated just now, the issue of transplant probably doesn't apply at this time BUT assessment probably would be open to you in the future if you did decline.
My hubby was diagnosed with decompesated cirrhosis April 2012, assessed and listed for t/p June 2014, delisted 10 months later as his liver had improved, decompensated again late 2023, assessed and listed for t/p January 2024, transplanted June 2024. His was non-alcohol related auto immune cirrhosis and it has proven to be a miracle thus far (fingers crossed it continues that way).
I wish you the best of luck, keep following doctors orders, stay sober, keep exercising, make sure you are eating your protein and carbs. Keep having your scans - you should have 6 monthly ultrasound and bloods as a minimum. Maybe ask to see a dietician if you haven't seen one already as they will make sure you are eating the optimum to keep you nutritionally well. Take any offered vaccinations and do any screening tests as they are offered - you need to make sure you keep infection to a minimum as this can decompensate your liver.
Many thanks for explaining decompensated/compensated liver cirrhosis and the necessary assessment and discussions required for a transplant to go ahead if deemed necessary in the future. I am so glad to hear that as my liver disease was caused by excessive alcohol intake this does not debar me from a future transplant.
You have explained so much very clearly in just a few paragraphs I feel more equipped going forward to try to remain healthy and more importantly positive for the future. I wish my Consultant on the day of my appointment would have given me the information you have shared. I have been feeling quite low in the knowledge that I caused my liver disease with alcohol intake. It is good to know that this does not prevent me from having a future transplant if deemed necessary and if I meet the criteria required.
Hopefully I will remain compensated, and will ensure I keep on top of my scans and vaccinations. Thank you so much for taking the time out to explain the process.
So glad your Hubby is on the mend. Thanks again Amanda
Hello, Katie has explained very well as usual. I just want to add that Liver transplant is one of the biggest surgerys to go through. My husband had his shortly before Katies partner. Nothing prepares you for the scale of it. Although it has saved his life, my husband now lives with health complications caused by the surgery. Transplant remains a life saver and if you ever get poorly enough to need one you and your loved ones will be eternally grateful for the oportunity, but the position you are in now with a well compensated Liver is the best one to be in. May I also give you a massive congratulations on all your hard work in getting so fit and compensated - fantastic work! Also, send a hug to your Mum for being so supportive 🤗Ewife
Thank you for adding your thoughts. I must admit I hadn’t really give it much thought regarding the scale of a liver transplant and possible post transplant health conditions. I will take your comments on board and continue to look after my compensated liver, whilst feeling blessed that my condition is stable and I am healthy ar present.
I was diagnosed with alcohol related cirrhosis in February 2024. I gad a severe swelling in my leg and was hospitalised for 3 weeks. I stopped drinking in May 2024 and got into exercise about when you did.We seem to have different symptoms though. My issue is my bilirubin which has come down from 250 to 172. They have done lots of investigations to see if anything else is affecting this as I don't have many other symptoms. But from early on they have talked about me having a transplant and because the bilirubin is still high and they can't see any other reason my case is being discussed today about putting me on transplant list or just monitoring. I am under the royal liverpool hospital.
If you are being checked regularly and feel ok i wouldnt worry to much. I actuslly feel very well!
Don't know if that is helpful or not. I would suggest talking to one of the nurses on her or joining a zoom to talk to other sufferers.
Yes, and yes they called me yesterday to say they are going to go through the forms to put me on the list. My partner and I have to go in next Tuesday to spend about an hour telling them finances and everything.
I feel like I should be more worried but I am a pragmatic. 😀
Best of luck. Sounds like a pre assessment, prior to the main assessment which will hopefully have you listed. What symptons do you have apart from Jaundice?
I am also under a consultant from the royal Liverpool hospital however I see him or should I say I saw him once in Southport hospital where he holds a clinic.
I now see the specialist nurses my bilirubin was over 200 and I was decompensated when I was in hospital. It is now down to 8. I am not sure was the normal level is but yours does sound quite high. Take care thank you for replying let me know how you get on.
I think it should be 18 or lower! I grew up in Southport and now live on the Wirral. I have to go in to the Royal on Tuesday with my partner to spend an hour going through all of the paperwork they need to put me on the list.
Hi there.Katie, in her inimitable style and depth of experience has answered the main question perfectly, so I'll just add a quick note.
It's great that you have your Mum's support. All my appts are attended by either my partner or Mum. Liver disease is a condition that desperately needs an advocate if you have access to one. You are bombarded with info, you are not at your best physically and often mentally; the whole thing can be very overwhelming and you often remember "headline" facts rather than the more subtle but equally important ones. After my diagnosis I said to my partner "I'm dead, aren't I?". She calmly pointed out that my prognosis was dependant on treatment, my efforts and ultimately transplant.
Your Mum is doing a brilliant thing in going out to bat with you. Send her some flowers occasionally! Good luck going forward, keep doing the right things.
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Had First Liver Consultant Appointment. 
Compensated liver - cirrhosis symptoms 15 months post diagnosis
First QE Appointment 
Transplant waiting list
Gastroscopy to check for varices
