Living in the shadow of hepatic encephalopathy
Liver Health Hepatic encephalopathy has robbed us of the wife and mother we once knew. We live on a knife edge, never knowing what to expect from one day to the next.
"Will she fly into a rage or become confused? Will she end up in hospital, in a coma, or even dead?” Steve Connolly, husband and carer of Hepatic Encephalopathy patient Sheila.
Sheila was diagnosed eight years ago with hepatic encephalopathy, also known as HE – a serious complication of liver cirrhosis that affects the brain and can cause dementia-like symptoms such as confusion, memory loss and personality changes. It can strike out of the blue - lasting for days, weeks, and in some instances even months. In a recent survey amongst patients and their carers, 40% of those affected said they felt as if HE never goes away. It can take a huge toll on patients and their families, making life unpredictable and challenging at best, and at worst, it can be frightening and almost intolerable.
Although most people with cirrhosis will develop HE at some point, many will be unaware they have it. But in 30-45% of cases, cirrhosis patients go on to experience more obvious symptoms, typically affecting their sleep, concentration, speech and behaviour. Severe symptoms can quickly become life threatening, with some patients repeatedly admitted to hospital, sometimes for weeks at a time.
HE occurs when the liver is so severely damaged, it is no longer able to remove the toxins from the blood properly. As the toxins accumulate they cause changes to the brain, leading to a range of behavioural or neurological symptoms that can make it very difficult to diagnose. Consequently, HE frequently goes undetected and is significantly undiagnosed.
There is currently no cure for the condition other than a liver transplant. Fortunately, treatments are available to help control and lessen the symptoms, reduce the recurrence of episodes and significantly improve the quality of life of sufferers and their carers.
Sheila is just one of 12,000 people living in the shadow of HE in the UK. Many will rely on the tireless support of families and friends, who live with the grief of losing the person they knew before HE and the constant worry of the next episode and what it might bring.
To help improve understanding of the symptoms and raise awareness of the impact of this devastating disease, the British Liver Trust and Liver4Life, supported by an unrestricted educational grant from Norgine Ltd, last year commissioned a survey on the experiences of patients and their families.
The survey makes for an alarming read. Over half of respondents had been hospitalised, or seen their loved one hospitalised in the previous 12 months as a result of an HE episode, with one in three being hospitalised multiple times, and some even more than six times in one year. Even more startling was the finding that once admitted, most patients (65%) stayed in hospital, on average for up to 10 days or more. For some (18%) an average hospital stay was up to a month or longer.
“These findings really drive home the crushing impact of HE on patients, families and the healthcare system, and this will only get worse as the incidence of liver disease and cirrhosis continues to grow,” said consultant hepatologist Dr Richard Aspinall, Trustee and medical advisor to Liver4Life. “These results are telling us that we have to get better at detecting and diagnosing the disease, and managing and preventing further episodes, which we can do through better awareness and treatment.”
Spotting the symptoms of HE
As HE affects patients in many different ways, spotting the symptoms can be challenging, but the survey points to some obvious tell-tale signs that should be looked out for. Erratic sleep patterns, forgetfulness and poor concentration were the most commonly reported symptoms, affecting at least 80% of patients. Personality or mood changes, memory loss, difficulty speaking or writing were also reported by more than half the respondents. Other symptoms were extreme anxiety, bizarre behaviour and seizures.
“Anyone with liver disease should be on the lookout for potential signs and symptoms of HE, and should speak to a doctor if they have any concerns,” said Dr Aspinall. “The earlier it is detected, the easier it is to treat, and the better the chance of delaying, or even preventing another episode.”
For support or more information about HE, contact Liver4Llife or British Liver Trust
References available upon request