Understanding doctors letter - British Liver Trust

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Understanding doctors letter

Heidi20
Heidi20

My bf was admitted to hospital January 9 with Ascites, oedema and slight jaundice. Admission form said decompensated cirrhosis. He hasn’t had a check up since leaving hospital 5 days later. He has since been admitted for acute onset of diabetes (level of 41) but now under control. He’s had a copy letter from doctors saying he’s class C Child Pugh score, won’t be under surveillance for HCC and that his liver function was reassuringly normal as he’s stopped drinking.

Does this mean he’s too ill to receive treatment if he develops cancer of the liver? He’s only 46 and no one is telling us anything

11 Replies
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Hi Heidi, I would be questioning the decision not to monitor for HCC as it is within the NICE guidelines that anyone with a diagnosis of cirrhosis should receive 6 monthly screening for HCC - with a scan and blood tests for Alpha Fetoprotein (AFP).

Child Pugh C is the most severe stage of cirrhosis and with your bf's history of decompensated cirrhosis he should perhaps be going to a transplant unit for consideration for transplant assessment.

What is the cause of his cirrhosis? If it was alcohol then you need to have a proven 6 month period of abstinence before you'd be considered for t/p assessment.

I would be wanting to seek clarification of his diagnosis and what the forward treatment plan is, even if drink was the cause of his condition it doesn't debar someone who has made significant lifestyle changes from being assessed for transplant. Either write to his consultant for this information or go through the hospital PALS service. They can't just bin him off if he has stopped drinking. The reassuring thing is his condition has stabilized a bit just now but that might not continue so he does need a regular monitoring regime in place. Hospital would be breaching NICE guidelines if they were not to monitor for HCC.

Katie

Heidi20
Heidi20 in reply to AyrshireK

Thank you so much for replying. It feels like they’ve discarded him as his cirrhosis has been caused from alcohol. I have been with him 24/7 since January and know he hasn’t had a drink. He’s not attending any AA meetings so this can’t be verified and no one has even mentioned transplant.

I’m going to follow your advice and get my bf to question the lack of care for him

AyrshireK
AyrshireK in reply to Heidi20

Just because alcohol is the cause it is no reason to bin him off - a great many people here are post transplant due to alcohol related liver disease.

Up until recently the breakdown of need for transplant saw patients with alcohol related liver disease making up the highest percentage of the total number of transplants.

Your bf needs to be able to prove his abstinence and commitment to lifelong abstinence and if he is willing to do that then transplant shouldn't be out of the equation.

With Child Pugh C he is in the most poorly bracket so shouldn't just be left, he might stabilize but you need to be at least touching base with transplant team and he should be being properly monitored (ok, covid has put paid to that at the moment but it should resume).

If you are in the UK then NICE guidelines stipulate the monitoring for HCC. This is the guidance for monitoring cirrhosis in the UK & might prove handy in your discussions with his medical team.

nice.org.uk/guidance/NG50/c...

Go with him if you can to appointment, two pairs of ears are better than one and it'll demonstrate he has a support network etc

Keep fighting for him, be a team in this.

Katie

Heidi20
Heidi20 in reply to AyrshireK

Just been reading through the guidelines.

The doctors note read ‘Due to the fact that he is Child C he would not require HCC surveillance’

The guidelines read 1.2.6 Do not offer surveillance for HCC for people who are receiving end of life care

This is getting worse! I’m now thinking he doesn’t have long left; we had so much planned to do together.

I’m going to get him to phone the consultant Monday to ask exactly what his prognosis is.

I cannot begin to thank you for the time you have taken to reply to me.

JDA69
JDA69 in reply to Heidi20

Hi Heidi

As a wife of someone who has gone through the same thing if your boyfriend was considered 'end of life' then he would have been referred to the palliative care team as my husband has done. It's not the first time he has been hospitalised with decompensated liver disease but it is the first time that he was considered 'end of life' stage. That being said, he was given less than 6 months to live in February as he was in liver failure and not responding to any treatment but he is still here and has stabilised. We have had a telephone consultation with the liver specialist who just said he will speak to us in 6 months.

Happy to chat if you want to message me privately, it's possible some of things you are going through are similar so it's always good to talk to someone who has been through the same thing.

J

Heidi20
Heidi20 in reply to JDA69

Hi J

It feels like I’m the only one going through this and have no one to talk to. Saying that it’s nice to know someone else who is going through this somehow feels so wrong.

My bf phoned the hospital and all they said was that a letter was being sent out to him within the next few weeks to call him in and talk about what options are available to him.

Still pretty much in the dark tbh.

JDA69
JDA69 in reply to Heidi20

Yes I know what you mean but it is 'nice' to know you are not alone and someone has a similar experience. Like I say, happy for you to private message me if you need anything.

J

Heidi20
Heidi20 in reply to JDA69

Hi J

How do I private message you?

JDA69
JDA69 in reply to Heidi20

I've sent you a message so you should be able to respond to that.

Hi Heidi,

I’ve not a lot of advice but having read through the comments would it be helpful to speak to his GP and ask them to tell you what this all means for him? It sounds as though you’ve not had any support when you really could do with it x

Trust9
Trust9Administrator

Good morning Heidi20,

As our lovely forum members have suggested, further clarification is needed for your boyfriends care plan.

You can also call our nurse led helpline Mon-Fri 10am-3pm on 0800 652 7330 , if you would like to talk things through.

Take care,

Trust9

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