Is there life with Liver Disease?

I am telling you this story to share my journey and also try to shed light on a disease that many people only see in one aspect.

I owe an explanation to you all, my readers. In the last few months, my postings have been more erratic than I would care to like. It comes from health issues. December 24th of 2020 was the first time I had been to a doctor in over twenty years. I touched on that in a previous post. There were many tests done since it had been a while since my last visit. First, a diagnosis of high blood pressure and meds to treat it. Some of the blood tests showed levels that caused concern and prompted more tests. The two elevated levels were ALT and AST, I will touch on that more a bit later.

These levels prompted an ultrasound. The results from that led me to see a hepatologist. If you aren’t aware, a hepatologist is a liver specialist. I met with her and she remarked that my levels seemed elevated but didn’t match the results from the ultrasound. She decided to set up a different kind of ultrasound. Those results were also a bit inconclusive and led to a larger blood work panel. That panel showed similar results to the first one and led to more questions. Finally, I was set up for a liver biopsy to get the final results. That biopsy happened about two weeks ago and was painful. The end result was that it showed I have liver disease. Needless to say, this has caused some emotional responses to the diagnosis.

Growing up, people didn’t know much about liver disease. My mother and father both worked in a bar when I was a kid.  I watched many of their friends suffer from the effects of alcoholism and cirrhosis. This was the only view I had of any liver disease. My mother found out she had liver disease and that changed my whole world. Unfortunately, they only caught it once it was cirrhosis. My mother wasn’t a drinker but her doctors told her she got it from drinking. After much insistence, they actually found out that the medication she was on for rheumatoid arthritis caused damage to her liver.  The medication she was on caused her liver disease to escalate to cirrhosis.. Now I am aware that liver disease runs in my family. My siblings have it and so have others on my mother’s side. This is where I am at now.

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Lifestyle Changes

During the process of these tests, I found out that I most likely had some form of liver disease and needed to make changes to my life. Add to that having high blood pressure and the changes became more important. Diet and exercise would be the biggest changes. I wasn’t worried about changing my diet. Since I have been dating Karl, I had started to adopt a more vegetarian diet. I would say that I currently have an 85% vegetarian diet. Exercise is a different story.

I can manage most of its progression with strict adherence to lifestyle changes. Those changes include dietary changes, exercise changes, and absolutely giving up alcohol. Alcohol is the number one factor in accelerating the disease. Following these changes means I have a higher chance of having a normal life expectancy. This has been the hard part of what I am dealing with. I have only seen liver disease and cirrhosis as a death sentence brought on by negative lifestyle choices. I am now learning that my genetic predispositions are also a large factor.

Reshaping how we think

Let’s set the way-back machine for the early 1980s and the rise of the AIDS epidemic. During that time, the media and most of the world viewed this as a disease that ONLY affected gay men. GRID (Gay Related Immune Diffenecy) was the original name for the disease, because of this. It took almost a decade for our understanding to start to shift. The reality is that today it is still viewed as a “Gay Disease.”

The point of that is to show that oftentimes there are misconceptions about diseases, how we get them, and whom they affect. Such is the case for liver disease. I mentioned that growing up I only ever saw it affect those who drank a lot. My thoughts shifted when my mother and siblings were diagnosed with liver disease. In fact, it wasn’t until 1980 that the first case of non-alcoholic fatty liver disease was diagnosed. It is now considered to be the frequent cause of unexplained cirrhosis, in Western Societies. It has become a disease that doesn’t only affect alcoholics, it also affects children. The alcoholic stigma is still there, though. Many of you may have that viewpoint of me. That is fine, hopefully my sharing, educating, and your research may change that opinion.

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My journey begins

It’s been a rough ride in a short time. I have felt so many emotions over this diagnosis and it has been hard to take my mindset out of the darkness it has been in. I want to live, I have people in my life that I love very much and enjoy spending time with them. I do not want to rob them of those sharing moments any more than I want them removed. So, I choose to fight where and how I can. This requires change.

You have seen in the past months that I talked about changing my diet to a Mediterranean diet. I am reducing calories, fat, and sugars in my diet. My boyfriend and I have been doing meal prep on Sundays for a while, but the new diet poses challenges. I am becoming more vegetarian than I already was and learning how to eat in a new way is an adventure, in and of itself. I have all but removed deep-fried, greasy foods have. I have enjoyed red meat most of my life, I have also reduced it from my diet. That has been a major shock. I refuse to look at this as a diet that is forcing me to do something I do not want. Instead, these are choices I can make or not. By choosing to shift my mindset on how I eat, I realize this is a lifestyle change. I don’t work with the mindset that I cannot have something because of this disease, I see it as I choose to live better. I can still have cheat days or slip up, it happens to the best and most fit people. The difference is getting back on your horse and continuing the journey.

I stopped drinking two months ago, I felt it was going to be a much bigger challenge. Sure, I miss my Guinness and a glass of wine but I haven’t felt I needed it. What has been harder is seeing how my friends view me because of the changes. Before, I was the guy who would go out and drink with them and have fun. Now I am seen as the sober one – that entails I am not fun anymore. It creates a different dynamic with them. They understand the need for change, but they feel that things are different than they used to be. I have to see that my life is far more important than my favorite glass of Guinness

Exercise has been the biggest challenge. I have arthritis and have had it for years. It can make being active very painful and most times I have opted for more sedentary ventures. I was given a goal of a minimum of 150 minutes of aerobic activity a week. I knew that such a low level would be easy for me to quit. Instead, I went in with the mindset of at least an hour five days a week. Each hour I bike a minimum of 15 miles on a stationary recumbent bike. Karl and I also get out and walk four miles, as a part of that weekly regimen. This is where I choose to start. So far, I have lost twenty pounds,  I consider it a good start.

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Why this is important

I am telling you this story to share my journey and also try to shed light on a disease that many people only see in one aspect. I can use my blog as a platform for educating about what I am going through, recipes that I find helpful, and information on this disease. My hope is that others may take away from this the need to get checked out with their doctors or to make an appointment with one if you haven’t seen one in a long time. Liver disease is a silent killer. Many do not even see a symptom until it is too late. If you have blood tests done, have your doctor look at them and explain them to you. I hope you won’t have to go through this or at least you can catch it early enough that you will not be where I am at now. I want to answer the question of can life go on with liver disease?

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