So my husband had his review with the Hepatologist this week and he let me go along after a bit of persuasion.
He has decompensated Cirrhosis with mild jaundice - Child Pugh B7 and UKELD51 some evidence of portal hypertension. Still trying to get my head around these classifications.
He is on a range of medication and has a follow up to check for Encephalitis? and some checks to further investigate one part of the liver that could have a cancer nodule (but Consultant thought it unlikely).
He has been dry for 2 months and the advice was to carry on with the good work and he will be closely monitored going forward. Seems like the jaundice is going away.
I was scared out of my mind that we would be talking transplants but that doesn’t seem on the cards for now.
I just wanted to post my huge gratitude for this board that has really helped me through a very tough couple of months and to maybe hear from anyone that had similar results and what the next 6 months might look like? (Although I know everyone is different).
I feel so incredibly relieved which is a weird thing to say when he is so ill but I had all sorts of scenarios going through my head.
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GadaboutGal
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I am very glad he let you attend his appointment - it is crucial that you both hear the information so that you can keep up to date with his current situation and hopefully be aware of what to look out for going forwards. There have been long periods during my hubbies health journey where he couldn't have understood appointments nor made himself understood so it's been imperative that i've been with him every step of the way.
I am guessing rather than encephalitis it was encephalopathy that they are arranging some follow up for - Hepatic Encephalopathy is another symptom that can come along with cirrhosis and it's where toxins build up in the system and start crossing the blood brain barrier and it can lead to all sorts of symptoms - from mild confusion, sleep disruption, trouble concentrating to very severe symptoms more akin to a dementia and it is very important that your hubby moves his bowels frequently (3 to 4 times a day) to rid his body of toxins. Usually they will prescribe lactulose to help with this - not just as a laxative but because it has properties that help the body get rid of toxins.
Transplant won't yet be a discussion to be had, hubby hasn't been sober long enough to be considered for transplant assessment and fingers crossed with continued sobriety and a healthy lifestyle he can stave off the symptoms that might deem it necessary.
What the next 6 months hold is very much an unanswerable question - best case scenario his liver (minus the booze) can start to compensate and he can go on to live a healthy(ish) life. But, having cirrhosis can now bring other symptoms particularly in light of portal hypertension, HE etc. Fingers crossed you don't encounter these but they are very much things you should keep an eye on (no need to obsess but a quiet watching brief for symptoms is needed).
Hi - thanks so much for the reply. Encephalopathy is exactly that yes!
Thanks for all the additional information. I found the BLT website really helpful in writing down what questions to ask (for anyone who has an appointment pending).
Feels like a long road ahead but my immediate panic has calmed a little. It was a horrible shock when he was admitted to hospital in July. But it’s reassuring to know that others have been there and are surviving!
It's always a shock when you get a sudden diagnosis - my hubby (fiance as he was then) was hospitalized with what turned out to be decompensated cirrhosis symptoms in April 2012. As a total non drinker it hit us both like a tonne of bricks to go from healthy, fit, long distance walker to (in his case)potentially life threatening symptoms almost overnight. In subsequent years his health improved. Listed for transplant in 2014 but subsequently improved enough to come off the list. Only deteriorated (BIG STYLE) towards the end of last year and thankfully received a liver transplant at the end of June this year and is definitely on the road to life renewed.
Life with cirrhosis as i've always said is a roller coaster, ups and downs, bad days and good and you just have to ride it and make the most of the better days.
Wow sounds like you have had some real challenges to overcome. At least the drinking (in a funny way) gave me some warning signs and I knew all was not well. That must have been a horrible shock. Thanks for sharing ... hopefully now your hubbie has had the transplant things will improve. Wishing you both all the best.
All perfectly normal, we all think all sorts of negative thoughts, im in the boat a couple of years now so i dont get to phased these days.If he stays off the booze you can improve a lot, slow process but worth the wait.
Im doing all this on my own in a foreign country!! When my Doc see you in 6 months i think thank you, i wont through the xmas tree away.
Many sufferers on here are very lucky to have loving family with them.
If i can stay off it ANYBODY can so wish you luck.
Unfortunately, he is gravely ill at the moment. Child-Pugh score of 7 is actually Child-Pugh B overall. 2 months without Alcohol is not much time for the Liver to refactor itself and heal what it can. 6 months will tell you more about where he will be moving forward. I have known many to return to compensated around the 6-month mark, and some get improvements in their blood numbers for several years after stopping Alcohol.
He must NEVER drink again. How is his mental state ? He has a battle ahead. If the numbers don't improve, then the target is a transplant, but he must prove 6 months of sobriety to be considered.
I think I was maybe feeling overly positive and need to remember that he is still extremely ill. My Dad also has terminal cancer and the last few months have been awful. When I spend time with my husband - I worry I’m neglecting my parents and vice versa. I guess I can’t win in this situation as both parties are really poorly.
He has been extremely down - not getting out of bed much and sleeping a lot. Hence the test for Encephalopathy. Although in the last few weeks we have been getting out a bit more. His ‘sparkle’ has gone... I can tell that he feels life is a lot paler without alcohol but I see flashes of the old person in there now and again. We have been trying to find new things to do like go to Comedy shows and the theatre - activities that don’t revolve around drinking.
I'm sorry to hear that you're experiencing even more stress. In your situation, you must also consider your own mental health. Perhaps you should find some time for you to chill out.
Alcohol is a sneaky drug, he has to be careful he doesn't get into a mindset of "F it" and pick up a bottle. Alcohol has been described as one of the hardest to quit, because it's everywhere, even in petrol stations !
Yes I’m getting some counselling to try and have a release for me too. Luckily I work from home so it would be pretty hard for him to start drinking without me noticing. So I’ll just try and keep him positive and sober for now. Thanks for your message.
well done on his sobriety. I can promise both you and him, it gets easier.
Health and score CAN improve. I was the same, decompensated cirrhosis with portal hypertension and 1 varices. It was a very bleak outlook and a sense of sheer hopelessness.
1 year on my prognosis has changed to 15yr+. Fully compensated, bloods good ( which were all over the place) liver normal size, no fat, little bit scarring.
Slowly everything CAN improve, it happens in a way you might not notice until you reflect on the previous month.
Complacency is the enemy… the first 4 months I was to ill to work. The boredom is what I filled with drink. After 4 months it got a lot easier.
It can be different for everyone, all I would recommend is exercise best he can. Eat as well as he can. I treated myself to a sweet treat everyday. Set achievable goals. Due to massive changes needed, adding more can really throw you in my experience.
I had my 6 month US last week. The doctor told me the reason the life expectancy can be so short is due to people being unable to stick to the changes suggested. It’s not easy. But certainly in my case as mentioned, I went from pain in my legs, struggling to walk, for the first few months. To running 13 miles within a year and feeling great.
Make the necessary changes now and introduce more slowly. He’s doing great. He may at times feel extreme anger and frustration or even shame. This was directed inwards for me. I’ve viewed my diagnosis as saving my life now, Even though frustrations pop in now and again.
There are many others on here with far more success than me. It’s worth both of you seeking these stories out to help. I posted my experience at the 1 year mark aimed at yourself and husband a few months ago. It was really to put the questions I had initially out there, I wasn’t as lucky as your fella in the way of a supportive wife. It may help both of you.
Thanks - it’s good to know that maybe things get easier after 4 months. He decided to tell everyone he has Fatty liver (I think he’s a bit ashamed of the reality), which is fine but a lot of people keep asking when he can drink again ... which is not helpful. I hope in time, he may be more comfortable with the truth.
It’s great to hear your story and how well you have done. Interesting you mention the pain in your legs too, as he is walking so slowly at the moment and I have no idea why. Maybe that’s it! His legs were extremely swollen when he went to hospital but looking a lot more normal now.
I’m a little bit dreading Christmas already as it’s a time of drinking but I think if we just stick together and keep going - he can do it. Thank you for sharing hope!
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