Hi everyone, My husband was diagnosed in January with hepatic encephalopathy he has end stage liver disease. To cut along story short he was told by the consultant in Feb about having a discussion on the next appointment about a transplant, so the that next appointment came and we has to ask her about it she then said I'll need to speak to my boss. Which we accepted and left. Then a few days later his next appointment came in and it is in September! Should we be worried its so long away or should we accept that. I feel its too long. It's alcohol related but he's not had any since October last year. He's doing good with abstaining from it but really tired, restless legs, not being able to do much he's not got a great quality of life at the moment. I'm just so worried he will give up as he has been so down and deflated since that appointment. This is my first post but really find reading all your situations and what you are all doing through very helpful. It's so hard at the moment
End stage liver disease: Hi everyone, My... - British Liver Trust
End stage liver disease
Write to the consultant and point out the long time to the next appointment, explain all hubbies symptoms and re-iterate your request for him to be seen at a transplant centre (if the hospital you are currently at isn't one). Are they happy with his sobriety? Is he currently getting any alcohol support to prove his abstinence? There used to be a stipulated 6 month period of proven sobriety required to even progress to assessment but that has recently been changed although a person still can't be listed if there is any question about their commitment.
I will point out though that having Hepatic Encephalopathy alone doesn't seem to score you a great many points or hurry up the actual chance of getting a call. My hubby has HE and few of the other signs of decompensated cirrhosis (no ascites, little jaundice, no itching). He's been ill for 12 years and for a lot of that time has had covert HE finally developing to be very obvious requiring hospitalization in December 2023. He was listed for transplant on January 26th and is still waiting with a surgeon telling us at clinic last week he's not scoring enough on the algorithm to actually get a transplant any time soon.
Ask the question, be the squeaky wheel, doctor might not be aware of how long away the appointment service has scheduled his next appointment for which is around about a standard 6 months away.
Katie
Thankyou so much for replying. I don't think I can do this for another 12 months far less 12 years! He's not sleeping, he has to get up during the night due to sweating, getting changed and changing the bed at least twice a night. I will write to her, I was going to try call her secretary but don't even have any communication as to who we actually speak to or even where they are based. He hasn't been offered any support he has done it all on his own so does he need to have proof of his abstinence?
Feel we are getting no information as to where he is at. We need updated I think.
12 years that's a long time to be unwell! I hope you here soon
When a transplant was mentioned to me first time round l waited for about 6 months for them to mention it again they just kept a eye on my bloods for that time to see if they were coming back into range but they did not so he sent paper work off for transplant then l was going every 4 weeks for blood tests at that time i had my assessment 2 months later then transplant 5 months after that
Aw thankyoi think I might be panicking for nothing then. 6 months just seems so far away when he his quality of life is not great. Thanks again
Hi Janet 1309
I have been sober for 21 years this September and was 19 years ill before my transplant and hospitalised for 3 months with twice having sepsis and a bout of HE which is a lot for you to hear but it’s life. I would definitely say my appointments were every 6 months to be seen so maybe an email to the liver department because that way you have a paper trail. Good luck keep positive they can do wonders 💕💕.
Stay safe all
Dogbot 🐶🌈Dave
19 years unwell! Wow. well done on being sober for 21 years that's fantastic! It's all new to us didn't think it would be such a long time between appointments as he has seen the consultant every 6 weeks since jan. Prob me overthinking things. Lack of sleep is telling on us 🤣 Thanks for replying I appreciate it
Just a thought have you got a liver team?, if so the coordinators are lovely ladies to contact, they are very friendly and helpful. They can get messages to doctors and consultants and are more than happy to ring you about problems.
No we already asked if there was a liver team we could contact if needed to ask anything and she said to just contact the consultants secretary. To be honest she's not the most helpful of Dr's. Not very forthcoming with any information or anything for that matter. Feel every time we come out the clinic we are no further forward to what's happening
Hi Janey1309 the wife and I were in the same boat to start with but the trick we was told was write a list of the questions you have and sit until she answers them, they seem to think that you don’t have much of an interest until you ask questions then we found we got the answers we wanted. Try it🤷🏻♂️what do you have to lose 😃👍💕💕.
Stay safe All
Dogbot 🐶🌈Dave
Dear Janey1309,
We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) including one next week for HE.
If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here
britishlivertrust.org.uk/vi...
Best wishes
British Liver Trust
I would love to join this on the 10th May but unfortunately I work on a Friday 😞
I'm really sorry to hear about what you and your husband are going through. It sounds incredibly tough. It's completely understandable to feel worried and frustrated about the wait for the next appointment, especially when it concerns something as serious as a transplant discussion.
It might be a good idea to reach out to your husband's healthcare team to express your concerns about the timing of the appointment. They may be able to provide more information about why there's such a long wait and if there are any options to expedite the process.
In the meantime, it's important to continue supporting each other and focusing on maintaining your husband's health as best as possible. It's great to hear that he's been able to abstain from alcohol since last October, but I can imagine how challenging it must be for both of you dealing with the symptoms and the impact on his quality of life.
Remember, you're not alone in this. There are support groups and resources available that can offer guidance and assistance during this difficult time. Hang in there, and I hope things start looking up for you and your husband soon.
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