My son died at the age of 36 in the USA in September 2023. He had been alcohol dependent but had finally managed to stop drinking a month before, and his liver results were steadily improving . He woke up one Sunday bright yellow but feeling fine and it took his wife 48 hours to persuade him to go to the hospital, where he was immediately admitted. I don’t have access to many of the medical test results but it seems his bilirubin levels were increasing although liver scans didn’t show any abnormalities. They slowed down his bilirubin increases and sent him home on the Saturday with instructions on healthy eating and exercise, which he followed. The following Thursday he had a major nose bleed and we persuaded him to go back to the hospital to get it checked out. We were told we were over reacting but they would do blood tests anyway- and 20 minutes later he was admitted as an emergency as his kidneys had failed over the intervening 5 days. He was then treated for end stage liver disease and passed away 8 days later.
Is this a normal time period (23 days) for the disease to run, and is kidney failure something that happens? Someone has suggested that it may have been undiagnosed sepsis rather than liver disease and now I just don’t know what to think. Any thoughts / advice would be so helpful.
Thank you.
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Tortoise57
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Firstly I am so terribly sorry for your loss. It must be very hard for you, especially not being there and not having all the answers.
None of us here are doctors and without knowing all the ins and outs there is simply no way to tell how badly damaged his liver was.
Jaundice as you describe is a bad sign. Bilirubin is normally filtered out by the liver and when the liver cannot function well enough to do this, it spills out into the bloodstream and into the skin and eyes causing jaundice. It's a medical emergency so not getting treatment for it could have caused damage.
There is a form of kidney failure that can come on very suddenly in patients with advanced liver disease.
We're so sad to read this and we so sorry for your loss.
If you (are in the UK and) would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Hi, I am so sorry to read your post and the loss of your Son, this must have been devastating for you. My partner also passed away in September 24 with very similar symptoms. We took him to A&E after he developed severe jaundice and ascites, problems with his speech. He said he had stopped drinking 10 days prior however I don’t know if this was true. We could never tell if he was sober or drunk as his behaviour became the norm. Over the next few days he developed a huge bruise on his torso and his kidneys started to fail. He was put on a mild dialysis which was risky however his prognosis was so bad it was the only option and due to his age they wanted to give him the best chance possible. Sadly he went downhill and had everything against him with infection after draining the fluid confirmed as sepsis, HE, delirium. He developed problems with his breathing and he was not absorbing the feed, he passed away with pneumonia 3 weeks after being admitted. He was diagnosed with decompensated liver disease which we didn’t know he had. He was supposed to go for a scan in July to check the stiffness of his liver following a seizure in October 23, a waiting list of 9 months! I only found the letter in August just before he was admitted. It has only been 4 months since he passed and I am still struggling to come to terms with the fact he has gone and no time to say goodbye
Yes you are right, the consultants did say that treating one ailment could also make the other complications worse. So they were constantly having to adjust his medication.
In my own post I wrote a couple of months ago another member informed me that you can ask for medical records which I did and this has answered a lot of my questions. In my partners case his notes referred to Acute Decompensated Liver Disease which progressed to the fatal stage of acute-on-chronic liver failure, characterised by massive systemic inflammation and organ failure.
They confirmed the following:
Likely been drinking a high amount for a long period of time which has caused liver cirrhosis, on admission has presented with acute on chronic liver failure. Bilirubin is very high which indicates advanced liver failure. Chronic liver disease has caused high pressure which has caused fluid to be accumulate on his abdomen, and that this fluid has become infected.
I have also researched the following which may help answer your question about the timeline:
Acute decompensation (AD) of the liver is a clinical syndrome that indicates the transition from compensated to decompensated cirrhosis. It's characterized by the development of:
Ascites
Gastrointestinal hemorrhage
Hepatic encephalopathy
Bacterial infections
AD can occur rapidly over hours or days, even in patients without a history of impaired liver function. Precipitating events that can lead to AD include: infections, exacerbations of the underlying liver disease, alcoholic hepatitis, and drug-induced liver injury.
The most fatal stage of AD is acute-on-chronic liver failure (ACLF), which is characterized by massive systemic inflammation and organ failure. ACLF has a high short-term mortality rate, with more than 15% of patients dying within 28 days.
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How long and what to expect.
Decompensated Liver/End stage Liver Disease
This time last year
Sorry all, this is a long post by way of introduction and first diagnosis
