Hi, just looking for advice, views, experiences. My husband was diagnosed with Cirrhosis following an episode of vomiting blood in September 2017. Further bleed in January 2018. Following banding, he has had no further bleeds. He was advised to go for transplant assessment as his UKELD score was 53 and very close to the level for consideration for transplant. He was not put on the list after assessment, he is otherwise physically fit, no booze since September 2017, works full time. His UKELD is now 54 and his consultant advises that he get a 2nd opinion for transplant. Our consultant is lovely and we do have a lot of faith in him, but my husband has no symptoms relating to his Cirrhosis. He had just come off Rifraximin and is not experiencing any symptom of encephalopathy. The statistics are very scary when I google his UKELD score but he is now nearly a year and a half on, and although he’s not getting any better, he’s certainly not getting any worse. Can you live long term with Cirrhosis? We don’t want to go thru another assessment to be turned down and his UKELD had improved
UKELD Score: Hi, just looking for advice... - British Liver Trust
UKELD Score
If your husband isn't currently showing symptoms from his cirrhosis - especially no signs of decompensation then its unlikely he'd get listed. Transplant (owing to the shortage of organs) is seen as a life saving operation, they won't put someone through it if they are doing ok in the grand scheme of things. A percentage of patients don't make it through the operation and recovery period, where risk outweighs potential benefits then its best that you keep your own liver and carry on with monitoring in place to pick up changes that will then potentially lead to need for transplant.
My hubby was assessed and listed for t/p in June 2014, however, as he remains stable with none of the major symptoms of advanced liver disease he was delisted after 10 months. He is just being monitored again.
My hubby is unable to work due to fatigue, inability to concentrate and other minor signs of HE.
I don't know what hubbies UKELD is or has ever been - we've never been told.
Katie
Katie - another great post. I feel for hubby I really do. And for you of course. Having even slight HE is not nice for anyone or their partner. Worse thing, apparently, from what I’m told, was my mood swings and irrationality. Also not being able to work - 4 years before TP for me. - and not since either, yet. I don’t think some people realise how debilitating it all can be even if, like your hubby, you are not THAT ill to get on the transplant list. That was my situation for the first 3 and a half years ☹️.
Wish you both the best of luck.
Miles
Thanks Katie, that’s what I was thinking, it seems pointless to put him thru this again when he has (luckily) showing no symptoms currently. I know this may change in the future and believe me, we are aware of how serious his disease is, we’re not sticking our heads in the sand! It’s great to hear from people that are experiencing this rather than a consultant many thanks for taking the time to reply and I wish you and your hubby well. New to this site and typed up a response but don’t think it was posted so apologies if there are 2 slightly different replies !
If the cause was alcohol and he doesnt drink then sure he can live long. The possible down the road complications of it may or may not pop up but if he is abstinent and showing no symptoms of his cirrhosis than hes compensating. Liver transplants save lives and are a beautiful thing. But you certainly dont want to have one if you dont need one. They have complications that come along with as well. Talk to the doctor about the UKLED score but as Katie says they wont likely list him if he is compensating and take that as a good news!
Thanks so much for replying. His results don’t seem to reflect how he really! At the last transplant assessment we did feel like frauds as he is looking and feeling so well. Even the surgeon said it would be unlikely he would be listed as he is functioning normally. No booze since 2017 so I guess his liver is not getting any worse, but not getting any better. Thanks so much for taking the time to reply
Hi Rolawin
Welcome to the forum
I can’t add anything to the two excellent replies already given. Like Katie’s hubby though I was never told my UKELD score but I still had a TP. I sometimes wish they never gave out scores, from what I’ve seen on here, it seems sometimes to cause such perhaps unnecessary anguish. Please don’t think I’m saying that’s the situation in your case, it’s just a general statement from what I’ve observed! Yoiks I’m digging myself a hole here which is unintentional!!
Good luck to you both!
Miles
Yes I know what you mean about scores! And sometimes the internet is not my friend! It’s quite scary when you look at stats. He looks well and functions fine on a daily basis, now off the rifraximin and I’m watching him like a hawk for any symptoms. Only been a week off theses but seems to be ok so far!! Still on the lactulose for now. I hope you are well post transplant and thanks so much for taking the time to respond
Always a good point you make Miles. Numbers can quite often cause undue stress and worry. It can make us become " number chasers". It's easy to become obsessed with it all. No medical finding can replace how well someone feels or how strong they are. If someone is feeling good and thinking positive that's worth its weight in gold.
To be fair to our lovely consultant, he did say that sometimes you have to look at your patient and how they are feeling rather than going by numbers and stats. It still feels like living with a lot of uncertainty but I guess that’s the nature of the disease. Doesn’t help that I’m a complete panic pants!
Oh uncertainty and liver disease is a very true assessment. Somedays I am driven mad by it I'll admit. But I am also a person that has far worse of a liver than I have symptoms too. On the outside youd never know I had it. To be honest on the outside I'd never even know I had it. As a fellow worrier sometimes the being ok brings worry. Almost like it's not " right" or a "calm before the storm". But I try and remind myself how resilient the liver is. If we had half of what going on in the liver with this disease in any other organ , we'd surely be fertilizer for grass by now lol!
Oh I’m so glad I posted! It’s great to hear from others with this (we don’t know anyone with it......that we know of!) and agreed, you just can’t tell from the outside, it’s really quite amazing (if that’s the right word?!) hubby has mostly good days, some off days but don’t we all eh! And yes, sometimes wonder when it’s all gonna kick off again. Hope you more good days than bad
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