Good morning, my partner of 31 years sadly passed away from Decompensated Liver disease last September, 3 weeks after being admitted to hospital, we didn’t know he had it. I now believe he may have suffered with HE for quite a while due to his unusual behaviour, hallucinations and mobility problems however at the time we put it down to the alcohol consumption and always thought he was intoxicated when at times he may not have been. This makes me feel quite guilty, although I had never heard of HE at the time.
The October prior to this he had a seizure as he tried to cut out alcohol abruptly but then started drinking again. Following this I made the decision to leave due to the toxicity of our relationship and to protect my family and our sanity, however we were still very concerned about him. In August last year when he finally agreed to go to A&E I found a letter dated March 24 for a Fibrescan in July 24 which he never attended. He said he didn’t know what it was for. By the time he was admitted he was severely jaundiced, had ascites then subsequently contracted sepsis, HPS and HE.
My question is would the scan have made any difference or saved his life or was it already too late? Why did he have to wait so long for this scan after having the seizure, it was the alcohol team that referred him? Would the scan have shown that his liver was already Decompensated?
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MrsD0ubtfire
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We're so sad to read this, and very sorry for your loss, if you would find it useful to talk this over with our nurses, our nurse-led helpline is open Monday to Friday 9am to 4pm on 0800 652 7330 excluding bank holidays.
With best wishes from all at the British Liver Trust
Sorry to hear you lost your partner- no words can help with this loss esp after being together for 31yrs. Regarding finding out about his liver's decompensated state earlier - via a fibroscan- you say he was still drinking until near his passing . I am not sure knowing the result in March would have changed the situation because I believe (but I am not a medic) from reading that he would have needed to be totally alcohol free for his liver to have a chance to become compensated.
Thank you 1ily , he said he had stopped drinking 10 days prior to being admitted but I don’t know if that was true. When they were treating him, a couple of weeks before he passed away they said he wouldn’t be eligible for a transplant as he would have had to abstain for at least 6 months and he was also very weak and malnourished. His hospital notes confirmed a poor prognosis but they were giving him the best chance possible and didn’t give up, sadly he started to deteriorate and passed away peacefully in September. His letter for the Fibroscan was dated March for a scan in July, therefore 9 months after his seizure. This is the only letter I have found.
I also thought once it is decompensated there is nothing they can do other than manage the symptoms, ascites, HE etc. How long does it take to get to the decompensated stage? I’ve googled this so many times and can never find an answer.
I am so sorry for your loss. You must be having all kinds if 'what if' scenarios. To be honest I am not sure whether the fibroscan would have made any difference. It was 4 years after being diagnosed with decompensated cirrhosis that my husband finally had a fibroscan .
Your husband obviously knew he had a problem as he had tried to give up. When he was admitted to hospital with the seizure I guess the hospital will have done blood tests and possibly scans to ascertain the level of liver damage and maybe have started him on some medication which perhaps he forgot or didn't want to take. If he had attended the fibroscan it might have been a wake up call to try abstaining again but maybe not.
It is part of the grieving process to feel guilty and try to unpick what might have gone wrong and how you might have changed things. I did that when my lovely parents passed. But you could not have known about HE, and even if you had, you could not have changed things unless your husband was willing to let you help. I hope you can get some reassurance from the comments here and perhaps a chat with the BLT helpline to help you move on. Take care and look after yourself.
The scan would only have confirmed that he had F4 - Cirrhosis. I would think that the doctors would have already confirmed a strong suspicion of Cirrhosis from his blood and symptoms. Doubtful, the doctors didn't give him a stark warning.
I think he did know what the scan was for, he didn't want to face it, I would suggest. His issues started way before the hospital visit; he turned up at the "end stage" of Cirrhosis, by the sound of it. It could have gone any number of ways, but with his continued drinking, it was inevitable that he would succumb to the effects at some point.
If you have children, then they need to be educated about his drinking issues; there is a strong genetic connection. Myself, my dad, my Uncle, and several of my sisters have at least some Alcohol Use Disorder. They need to be aware of Alcohols escaltory tendencies, sometimes taking years to be apparent.
Thank you so much for your responses Breakfastbabe and Smegmer , this has helped me a lot and it possibly wouldn’t have made a difference. Yes I definitely have a lot of what ifs. My partner never went to his GP (as far as I’m aware as I only requested his hospital records) no matter how much we expressed our concerns. In fact I went to the surgery myself in tears when he became jaundiced to ask them for help. They said unless he was prepared to admit he had a problem there was nothing they could do, if it gets worse call an ambulance! We had similar responses from CGL and one of the mental health consultants at the hospital, they closed the referrals because he was too intoxicated to speak to them. He was only ever given leaflets on alcoholism, no further help. When he was admitted with the seizure the only warning he got was that he shouldn’t just stop drinking as it’s dangerous, I think they could have worded it better as I think that was his green light to carry on. Maybe when I wasn’t there the alcohol team may have told him how serious it was but I will never know. Our children are both adults in their 20’s, both have wise heads on their shoulders and have seen a lot whilst growing up and how it can destroy relationships and families, so I’m hoping they never go down the same path.
It's only natural to seek some answers and what-ifs. The comment "shouldn’t just stop drinking as it’s dangerous" is telling; that means they knew he was physically addicted, and it is indeed dangerous to just stop.
Turning up to the hospital yellow and obviously having a drink issue, I'm sure they must have given some advice. But it sounds like there wasn't a lot of support for him. He needed a detox and some aftercare.
Please raise the issue with your kids. Your partner was one of the unlucky people that just get a more addictive effect with Alcohol. It can take decades to manifest. A traumatic life event, death, job loss, etc. can cause a spiral into Alcohol. One guy I grew up with is now dead; he lost his franchise for 16 shops for meat supply; he was on his way to riches before this. He died a couple of years ago on 4-5 litres of vodka a day. He never showed any signs of issues until this event; he was so sensible, he was the 1st to own a car in our group, had his business in his 20s. Very tragic.
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I don't know what to do
My husband has Decompensated Liver Cyrrhosis
Decompensated to compensated? 
