I lost my father to alcoholic liver disease (ALD) in 2016. The diagnosis came on June 24th, and he died only three weeks later. As a former nurse and recovering alcoholic, his diagnosis and death lit a fire in me to understand more about this sneaky and deadly condition. I was in a unique position of being his daughter yet also knowing a lot about health issues and the inner workings of the healthcare system.
After his death, I couldn’t help but feel like something was missed when he had visited doctors numerous times in the year before. This nagging feeling was the catalyst for my research and subsequent writings about ALD. It’s important to me to be able to support alcoholics and their families as they navigate the fear and uncertainty that comes from the many health problems caused by alcohol.
It’s become clear from the research and expert opinions that ALD is a highly complicated condition that is hard to diagnose and treat. However, the disability and mortality of ALD are severe and cause a lot of stress, especially for the families of people who have an alcohol addiction.
I have written a lot about the early signs of ALD and how this condition behaves in the body. In those articles, I receive many comments from family members who have been through this, and it’s clear to me that they feel alone and struggle to understand this condition. They also struggled with getting help and diagnosis for their loved ones.
For example, Jules spoke with me about her ex-husband, who died from ALD suddenly and similarly to my father. She told me that he had shown signs of illness for several months before this death, but many of his blood tests and scans didn’t show anything serious enough to warrant earlier treatment. It wasn’t until he became gravely ill that his blood work went “off” enough for the doctors to explore further. Only then did they find his liver was decompensated. Unfortunately, he died fairly quickly after he was diagnosed.
Another example came from Barbara, who spoke with me about her ex-husband, who is still alive. Barbara told me that she gave her ex-husband a piece of her healthy liver once he was diagnosed correctly with ALD. Again, Barbara tells me a similar story of failing health over several years but no proper diagnosis until his liver was about to fail.
Sadly, this is the case for many people with ALD — often, there are signs of obvious health problems; however, the various symptoms rarely get linked up enough to provide a precise diagnosis until the liver has fully decompensated.
As a former nurse, I find this distressing as this condition may indeed be preventable or, at the very least, less stressful for the family and the person with ALD if they can receive an earlier diagnosis.
So let’s look at a few key issues that families need to know about ALD in terms of diagnosis and coping. This advice is not from a doctor; instead, I have a nursing background to lend my expertise to this issue. With my nursing knowledge, I can provide advice on health promotion and prevention for ALD, but it’s wise to connect with a doctor to receive more complex information on the inner workings of ALD.
Getting an earlier diagnosis
The main issue with ALD is that it almost always gets diagnosed very late, which means the person often dies or has to wait for a transplant that they may not even qualify for. However, before that, people with ALD often deal with some form of disability, which can be costly and stressful for everyone. So the key to getting an earlier diagnosis comes in two parts:
- Firstly, doctors need to know precisely the amount of alcohol consumed on average per week and how many years this pattern has been in place. Without this vital information, the doctors can’t understand the symptoms of early liver issues. This leads to the critical point that liver disease has very confusing, widespread symptoms that rarely point to the liver. In fact, all of the signs of alcoholic liver disease are outside of the liver. For this reason, doctors need to follow the breadcrumbs, so to speak, but they can’t do that if they don’t have the whole story.
- Secondly, all the symptoms need to be linked up correctly. Often, people with liver problems go to the doctor complaining of annoying symptoms like stomach upset, acid reflux, anxiety and mental health issues, trouble digesting food, painful extremities, headaches, and problems with sleep, balance, and memory. All of these symptoms can point to a wide variety of causes. However, until the doctors can link everything up, isolating the liver as the causative agent becomes very difficult.
Given these issues, here are some points to consider when trying to support your loved one with potential ALD:
- Keep a tally of how much alcohol is consumed on a weekly/monthly basis and bring this information to the doctor. Also, write down how many years this pattern has taken place. If there were periods of sobriety, write those down too.
- Keep a journal of all symptoms. If the person with potential ALD has seen several doctors or specialists, keep all test results and clinical histories in a folder. This means you have to ask for copies of all tests and written clinical opinions from the doctors or specialists. You may need to work through privacy issues to ask for health information in some cases. It is very wise to accompany your loved one to their medical appointments, this way, you can be there with the person to ask for copies of health information.
- You can let the doctor know that given your loved ones failing health and alcoholism, you are concerned for the health of their liver. Expressing this concern and providing all the necessary information can be a game-changer. This may provide the impetus for doctors and specialists to look closer at potential liver issues.
You can’t change the drinking patterns of your alcoholic loved one
With all this said, it’s essential to know that as much as family members are concerned about alcoholic loved ones, they often have little control over the persons drinking and decisions. Much of the advice I said above is helpful only if the alcoholic wants to pursue the cause of their health issues. Unfortunately, even if we follow all the above advice, getting our alcoholic loved ones to the doctor may be challenging. It may even be challenging to get their participation in any of these processes. If they are unwilling to participate, none of the above advice is likely to work, and this is not your fault or your responsibility.
This advice is only effective for alcoholic people willing to get to the bottom of their discomfort and ill-health. I think of people like my father, who drank heavily but who did access healthcare for various ailments in hopes of feeling better. On his deathbed, my father told me that if he had known his liver was in such a bad shape, he would likely have quit drinking much earlier. However, many people out there may not quit drinking even if their liver is failing.
It’s essential to assess your situation. If your loved one wants help, then the above information can be helpful. However, if your loved one is unwilling to access support, there may not be much you can do. As sad as that is, you need to take care of yourself.
In a recent conversation with Dr. Mark Rego, psychiatrist, and author of the book Frontal Fatigue, he says that people who struggle with alcohol abuse don’t often come to the attention of their doctors. This is due to the robust nature of denial and the desire to maintain the status quo. Usually, family members conserve the person until things reach a breaking point, and they are forced to come into the care of the health system.
With that said, the families of people with potential ALD may indeed be an essential part of the diagnosis and treatment process. However, it requires the participation and agreement of the person needing care.
Hopefully, information like this can help support families of people with potential ALD as they navigate the frustrations and stress of diagnosing this condition. Alcoholism, in general, is hard on families, but when health issues become prominent, the pressure can become unmanageable.
It’s imperative to educate yourself and put realistic expectations on what you can and can’t handle. And remember, even if you can’t achieve an early diagnosis for ALD, it is absolutely not your fault or responsibility. But if this information can help even one person get diagnosed and treated earlier, I believe the information is worthwhile.