Disclaimer: This article does not represent medical advice as I am not a doctor. Therefore, please seek a doctors opinion if experiencing any symptom discussed in this article.
I’ve been writing about alcoholic liver disease (ALD) ever since I lost my father to this condition back in 2016. I’m also a former nurse who’s interested in unraveling this mysterious disease that has wrecked so many lives. For the most part, ALD sneaks up on heavy drinkers, and many die before they even know they have the condition in the first place. And if they don’t die, they are severely disabled until they can qualify for a liver transplant.
For example, Mike — who I met through one of my articles — had only a vague feeling of unwellness and felt cold all the time until he collapsed at work one day. The tests done at the hospital revealed advanced liver cirrhosis that could only be treated by a liver transplant. Mike was fortunate that he found a friend willing to give him a piece of his healthy liver. If it weren’t for that friend, Mike would not be here. Although he drank heavily for many years, he never thought his drinking would lead to a consequence as serious as advanced ALD.
Barbara, a fellow Medium writer who is dedicating herself to advocating for the partners and spouses of alcoholics, had a similar story with her ex-husband. He showed signs that he was unwell, but his symptoms were treated separately and not linked up. Eventually, he also required a liver transplant to live.
And then there’s Jules Weldon, whose ex-husband met a similar demise as my father. He had been gravely unwell, and Jules even found proper medical attention for him, but they just couldn’t line everything up, and he slipped through the cracks. He died suddenly a few days after being admitted to the hospital for “deranged blood work.”
I relate to all these stories because my father was in a similar boat. He had been unwell for many years but became more seriously ill a few months before his hospital admission. He suddenly couldn’t eat well, stand up properly, and had become very disoriented and weak. A few months before, his specialist thought his kidneys were in trouble due to diabetes. They couldn’t link up that he was suffering from hepatorenal syndrome, a very serious outcome of advanced cirrhosis. My father was in the hospital for only three weeks before he died.
The two main problems with getting a proper diagnosis for ALD is that, for one, it requires truth-telling on the part of the sufferer, something a heavy drinker is often not willing to do. For two, it requires that various symptoms are linked up enough for the doctors to gain vital clues about the origins of those symptoms. The liver is such a diverse organ that provides many functions for the body, so when it begins to fail, the symptoms are erratic, widespread, and confusing. However, once medical professionals know that heavy drinking is involved, they can then start investigating more profoundly before the liver entirely shuts down.
Although many types of liver diseases all have the same symptoms as ALD, those diseases have a much better chance of getting a diagnosis and treatment. Mainly, this is because there aren’t the components of secretive drinking that are the cornerstone of ALD. But also, doctors are more apt to pay attention to people who are not “addicts.” As many people know, addiction is highly stigmatized and improperly treated in this society, and as such, it just doesn’t get the attention it deserves in the healthcare environment.
Unfortunately, this means that heavy drinkers with serious signs of liver involvement may require extensive advocacy early on if their condition is to be treated at all. Often this advocacy falls on the loved ones of the heavy drinker because those with addiction issues are more apt to cover their condition than seek medical help.
So let’s talk about how we can help advocate for our loved ones with alcoholic liver disease. I'm writing this from a nursing perspective as I know the systems of health we are working in. However, I am not a doctor so it's important to seek medical advice after reading this article. It's also important to know that even with the staunchest advocacy, the heavy drinker will still not accept the help. If so, please know that even though we try to do what’s best, it is ultimately not up to us to save the heavy drinker.
However, I am very aware that many people like my father are entirely blind-sided by the diagnosis of alcoholic liver disease even though they know their drinking is a serious problem. Alcohol changes the brain, and it can significantly skew decision-making and the ability to be responsible over time. Experts have stated that liver issues can render a person physically unable to make proper decisions.
The truth is, there are many heavy drinkers out there that do want a second chance at their lives and would be open to understanding more about their health concerning their drinking. And if a heavy drinker has an opportunity to know in advance that their liver is in trouble, why should they be denied the right to have this information and possibly consider a change in their life? Also, why should they be denied the right to receive healthcare to improve their quality of life even if their drinking has led to severe consequences?
Here are the most important and simple ways to advocate for your loved one who may be dealing with potential liver-related issues from heavy drinking.
Bring detailed information about the amount and frequency of drinking to the doctor.
This is crucial — without this understanding, doctors simply cannot help. To understand if the symptoms are connected to the liver, the doctor has to be aware of any reasons for liver damage in the first place. For people who drink heavily, alcohol amount and frequency are the only data to alert doctors to liver toxicityand subsequent injury.
It would be good to track the amount and frequency of drinking and how long the pattern has been established. Give the doctor the average drinks per week and how many years this has gone on. Do not go on tangents; just give the exact average amount and frequency. Since the condition is confusing, it’s important not to further confuse the diagnostic process, but also, modern doctors have short attention spans due to increased healthcare pressures.
Bring a simple bullet point list of all symptoms (big and small), medication use, and other health issues to the doctor.
Next, when you go to your appointment with the doctor, bring a simplified bullet list of all confusing symptoms. Again, do not go on a tangent; just write it very simple and practical. Below that list of symptoms, write out a separate list of all medications and other drugs that the person uses, be it prescription or illegal. Lastly, write another list, very simple, of all other health conditions and past health conditions.
Tell the doctor you are worried about liver issues.
This brings me to another important and related point — let the doctor know that you are specifically worried about potential liver issues due to the person’s heavy drinking. Be open and frank because things very easily fall through the cracks without that. Don’t worry if the doctor becomes offended by your questioning; you have every right to ask and pester the doctor to take these concerns seriously. The fact is, whenever there is heavy drinking involved, it is the duty of our healthcare professionals to check for issues like liver disease.
Ask for liver-related tests and scans.
Sometimes, even armed with all this info, doctors may still be reluctant to perform tests and scans of the liver. Don’t be afraid to ask for that and explain why you’re concerned. There are multiple blood tests and scans that have to be done to know if the liver is affected. Also, these tests have to be linked and interpreted by various specialists to pinpoint the diagnosis. Unfortunately, liver disease is not simple to diagnose and often requires multiple doctors visits and tests early on before the liver reaches the point of failing. Once the liver reaches active failure, the tests become easier to read. However, this is not always the case for some people, and that’s why I advocate for this condition.
Insist that doctors and specialists look at all the symptoms together, not separately.
This is a big one. Often, liver disease affects other organs and systems of the body. The way liver disease behaves, it’s as though everything else is wrong with the body except the liver. This is because there are no symptoms directly related to this organ. There’s no liver pain or any definitive symptoms coming right from the liver itself. So the symptoms are often coming from multiple areas — digestive tract, heart, kidneys, nervous system, brain, and blood issues.
The most important thing is to line up all of these various symptoms in order to point towards the liver. As an advocate, you can ask that these symptoms be seen as a whole and that specialists communicate with each other. For example, suppose my father’s nephrologist had known about his drinking and other symptoms. In that case, he may have diagnosed the hepatorenal syndrome, which would have facilitated his diagnosis of ALD much earlier.
So these are some simple ways you can advocate for your loved one who may have potential alcoholic liver disease. Of course, those who are heavy drinkers can use this guide to advocate for themselves too. I chose to speak to the loved ones of alcoholics for the reasons I mentioned above. Often heavy drinkers are in denial, but more importantly, they may be rendered unable to think or make decisions properly due to how liver issues can affect the brain and nervous system.
My motto is always — the more we know, the better decisions we can make for our health and wellbeing.