A line from a famous movie goes, “Life is like a box of chocolates, you never know what you’re going to get.” Personally, I have found it isn’t always as fun or delicious. That fact was driven home, to me, on April 2, 2021 when I was diagnosed with cirrhosis. It was as if I had opened a box of Whitman’s sampler and bit into the Dark Chocolate Orange Cream piece, a most unexpected shock. Little did I know that this would be the catalyst of a great amount of changes to my life. This is My First Year With Cirrhosis.
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Liver? I don’t even know her
I studied biology since high school and started my college career in environmental science, so I had a little knowledge in human physiology and some basic duties of the liver. Now, my need to know what all it did became imperative.
What was hard is that there is little information that tells a patient what to do or expect in their first year with cirrhosis. Most books or articles tell you how you can prevent it or focus on fatty liver disease. There is little that helps you understand changes you need to make during your first year with cirrhosis.
What does the liver do?
Hopefully, you already know that the liver is one of, if not the, largest organ in the body. This football sized organ located on the right side of the chest, just above the end of your rib cage, does a lot of functions for the body. Some of its most important are to create albumin and proteins that help with blood clotting. It also cleanses the body of toxins like alcohol and bacteria. It is also the organ that creates bile that is needed for digesting everything that we eat. It is the storehouse for substances your body will need to break down later, things like sugar and vitamins. Just about everything that goes into the body is processed through the liver, at some level. It is also the only organ that can heal itself, with a few exceptions. It is also key in resisting infections.
As the liver takes damage it can cause scarring of the surface. As that scarring builds up, it can possibly lead to causing Cirrhosis.
What is Cirrhosis?
It is estimated that over 600,000 adults in the United States have cirrhosis. In the past, your diagnosis came with the warning that it cannot be cured. There are studies happening at present that are checking into the possibilities of reversing this disease.
When something attacks and damages the liver it causes scarring. This scarring is called fibrosis. Fibrosis is normal as it is the reparative response to injury or damage. As more fibrosis builds up it can cause the entire liver to be covered by scarring, causing it to shrink and get hard. This process is called cirrhosis and it is usually not reversible.
Any illness that affects the liver long enough can cause cirrhosis. Heavy drinking and illnesses like hepatitis are primary causes of cirrhosis, but a fatty liver disease can also lead to scarring that causes cirrhosis. Fatty liver disease may develop in people who are overweight and/or with diabetes. There are studies now showing that it can also be passed down in a family line.
If the liver does not process bile correctly and builds up in the liver, it can lead to cirrhosis. Prescribed medications may also cause Cirrhosis and liver disease.
Effects of Cirrhosis
As the liver becomes lumpy and stiff, blood is unable to flow through it easily. Pressure builds up in the main vein in the liver, portal vein, and creates a condition called portal hypertension ,when the pressure gets too high. To alleviate this pressure, the blood is routed through other veins. Some of these other veins are called varicose and can be found in the esophagus, the tube that carries food from your mouth to your stomach. While the blood is backing up, due to the increased tension on the portal vein, it can cause the spleen to start swelling. As swelling of the spleen increases, platelets in the blood are destroyed more than usual and that lessens the blood’s ability to clot.
Cirrhosis refuses the blood flow to the liver and in turn causes a buildup of substances like ammonia, that are normally cleaned by the liver. These substances can then escape into the body’s circulation. Since liver function is impaired, these substances build up in the body. Albumin and clotting factors are reduced due to this damage and cause more problems.
How to know if you have Cirrhosis
There is only one way to know if you have cirrhosis, you have to visit your primary care physician to discuss any issues you may have that are causing you to worry. But, how do you know if you should seek medical help?
Symptoms of Cirrhosis
Before we discuss symptoms, the general rule should be stated that if you feel bad for any reason, then seek medical advice. It is better to be safe and know what the issue is than assuming you are okay and don’t have it looked into. (I am sure there is one person reading this right now that is smiling over me pushing anyone to go to the doctor.)
Most of the time, liver disease and cirrhosis are hard to detect, unless you are being tested for them. The early stages of cirrhosis often present very little to no symptoms and at this point you are considered to be what is called, compensated.
Compensated cirrhosis is also considered asymptomatic. A patient does not have any ascites, varicella hemorrhages, hepatic encephalopathy, or jaundice.
As damage continues and the causes are not corrected, the patient then becomes decompensated. Decompensated cirrhosis is symptomatic. You start to notice ascites (fluid collection in the abdomen), jaundice (yellowing of the skin) sits in, variceal hemorrhaging starts (rupturing veins causing internal bleeding), and up to hepatic encephalopathy (confusion or foggy thoughts). Decompensation can improve if the underlying issues can be corrected.
Some basic symptoms of cirrhosis to be aware of.
- Loss of appetite
- Unexpected weight loss
- Red spider-shaped veins under the skin
Side effects of cirrhosis.
- bruising or bleeding more easily (gums, nose, and etc)
- Bloating as fluid builds up. Noticeable in legs(edema) or abdomen(ascites)
- Medicines/drugs/alcohol may have stronger effects on you
- Confusion due to build up of waste materials from digesting food
- Increased blood pressure
- Enlarged veins
- Kidney issues
- Skin and eyes take on yellow appearance
- Severe itching
Levels of Liver Disease
Liver disease is often broken down into 4 or 5 stages, depending on the reading source you look at. The four stages are as follows.
- Stage 1 – inflammation of the liver caused by immune system reacting to foreign substances like toxins. Can cause an enlarged livers and is also a result of fatty liver disease, hepatitis, and other causes.
- Stage 2 – fibrosis or scarring, caused by inflammation, replaces healthy liver tissue and results in reducing the functions of the liver. May also reduce blood flow to liver
- Stage 3 – Cirrhosis. This stage is caused by the continued and severe scarring from Stage 2. At this stage you may start to see other symptoms like jaundice, weakness, or fatigue.
- Stage 4 – Liver failure. At this stage, you liver can no longer function or heal itself. It no longer processes toxins and drugs causing them to build up in your body. Mental impairment is greatly increased and physical impairment becomes worse. Causing weight loss, diarrhea, and other problems.
This is not the only way of classifying cirrhosis. Any type of liver disease uses a system called the MELD (Model for End-stage Liver Disease) to determine the severity and need for transplant. The scoring starts at 6, the lowest score where liver function is closest to normal, to 40, the score of when a liver transplant is the only option. If you are diagnosed with cirrhosis, you are automatically at level six.
How cirrhosis is diagnosed
If you notice any of the above symptoms, please reach out to your doctor to begin testing for cirrhosis. The only way to, fully, be diagnosed with cirrhosis is through a series of tests. First, your doctor will start with blood tests to see if your liver is working properly. This will allow the doctor to see if there is any build up of chemicals in the body. They test for albumin, bilirubin, and the various other chemicals created or processed by the liver. These blood tests help decide if further testing is needed.
From blood tests, your doctor may move on to imaging tests. These tests are designed to see if the liver is swollen or shrunken. Over all, they are used to see the size of your liver.
If any of those come back positive, you may be moved on to a liver biopsy. This is the only way to see the severity of scarring that the liver may have.
Depending on whether you are compensated or decompensated, the frequency of these tests may change. If no ascites are present and you are compensated, you may only have to go back to your doctor for tests every 3 to 6 months. Some tests may be longer until done again, especially if you have had an endoscopy to check for varicose. Once you reach the decompensated state, your testing may become much more frequent.
Treatment of cirrhosis
Once you have been diagnosed with cirrhosis, there is little that can be done to reverse the scar tissues the liver has. The best option is treating the underlying issues and prevent it from getting worse. This means stop drinking alcohol, immediately. If other factors have caused it, then treating those conditions can help increase your overall health. Early diagnosis is the best for ensuring you have the longest and greatest quality of life.
I have cirrhosis, now what
I went to the doctor in December of 2020, at the behest of my boyfriend and because I felt something was wrong with me. I figured it was probably high blood pressure, at most. When I was sitting in the office being told I was being transferred to a specialist to do more tests due to a result on one of my tests, I was scared. My mother died of cirrhosis, due to experimental medicine she was placed on for rheumatoid arthritis. My brother die of cirrhosis due to drug and alcohol abuse. I knew what it looked like and how painful it will be. I was still in disbelief and shock when I heard.
Yes, I drank but I have also been overweight most of my life. I was never a heavy drinker, but that is really a subjective term. I was never the person who drank myself into oblivion or drank on a daily basis. I never thought my amount of drinking could cause cirrhosis. My mother had fatty liver disease which meant I had a greater chance of having it. There were many factors that led to me developing cirrhosis. What my hepatologist told me is that there was no definitive proof that showed where it came from and was more than likely a combination of factors. What mattered most now was getting ahead of this and keeping my quality of life as good as possible. This diagnosis was going to cause a major shift in my life and how I moved forward.
List things I had to be aware of, changes I needed to make – diet, exercise, what had to be given up. What was going to be my new normal.
The times, they are a changin’
As I stated above, some 600,000 people in the United States have been diagnosed with cirrhosis and, at present, there is no cure. With that being said, I learned to take some comfort in the fact that with lifestyle changes, I can prevent further damage to my liver and continue to live a relatively normal life and, also, improve it.
The question was, how do I go about ensuring that I can live a normal life with this disease?
The liver is responsible for aiding in digestion, making proteins, breaking down toxins, converting sugar into glycogen for the body to use, and helping fight infections. These all are impaired to varying degrees, once cirrhosis is diagnosed.
Blood has a harder time moving through the portal vein in the liver and causes pressure to build up. This condition is portal hypertension. As pressure builds it backs up in the spleen, causing the spleen to consume more platelets than normal.
Substances like ammonia escape into the bloodstream, instead of assisting in breaking them down. Since it cannot produce enough of the healthy substances your body needs, the liver works overtime in trying to correct that issue. This can in turn lead to elevating your chances of developing liver cancer.
Because of these things, how and what you eat will need to change.
Don’t call it a diet, I’ve been here before
Okay, okay, I know what you are going to say… diets dont work so how will this help with my diagnosis?
Simple, it has to become a lifestyle change. Your life just changed with this diagnosis, so why not take your life back and make some changes that will HELP you instead?
Caveat here – nutritional recommendations vary based on many factors, while this is what worked for me please seek out your trained medical advisor for what can be tailored for you.
Malnutrition will be one of the biggest challenges you will constantly face from now on. Your liver doesn’t work the same as before, many of the toxins it is responsible for breaking down become harder. It also becomes harder making the needed protein our bodies need – these have to be first in your mind now.
Make sure you are getting enough calories and high quality protein each and every day. This will ensure you have the needed lean body mass. Protein should be monitored because too much is just as bad as not enough, your doctor will help you learn the balance. This will help prevent muscle loss, as well.
As a rule, you should consume 16 calories and .50 grams of protein per pound of your body weight per day. Ex. A 150 pound person should roughly consume 2400 – 2700 calories and about 68 – 102 grams of protein per day.
This protein should come from quality sources and prioritize plant based first. Your body will have a harder time breaking down red meat.
How do I do this?
Having a boyfriend that is vegetarian helped make the transition a lot easier, I had already started including more plant based meal replacements to my food. Now, I had to learn what to eat and what not to eat. In short, check the lists below.
Foods to eat
- Fruits – apples, oranges, berries, and the like
- Vegetables – broccoli, cauliflower, tomatoes, peas, and potatoes
- Protein foods – eggs, dairy, lean meats (if you choose)
- Legumes – beans, lentils, chickpeas, soy beans, plant based proteins
- Nuts – walnuts, almonds, cashews, pistachios
- Seeds – pumpkin seeds, flaxseed, chia seeds, and hemp seeds
- Whole grains – quinoa, oats, brown rice, buckwheat
- Heart-healthy fats – olive oil, avocados (and oil),salmon
- Beverages – Water, coffee, tea
- Herbs and spices -black pepper, cumin, dill, parsley, thyme
**raw and whole vegetables, fruit, and nuts are preferable
Foods to avoid
- Absolutely avoid alcohol
- Highly processed foods – fast food, convenience meals, canned soups, and packaged snacks
- Unhealthy fats – margarine, vegetable shortening, friend foods
- Salty snacks – chips, crackers, pretzels, microwave popcorn
- Processed meats – hot dogs, sausage, deli meats, bacon
- High sodium condiments – soy sauce, teriyaki sauce, steak sauce, spaghetti sauce
- Undercooked foods – raw or undercooked meats, poultry, eggs, fish, oysters, or mussels
By this point, many of you probably think that I am completely crazy. I basically just said that I had to give up everything that I have eaten or loved. I choose not to think about it that way, I have removed the things that could lead to killing me.
Here is a tip, I learned that in small amounts, I can still, on occasion, enjoy some of these things – I only needed to learn moderation.
Let’s get physical
While changing what you eat and drink has a lot of positive changes, its not all that you have to do. Weight is now a factor you have to think about more. Fat buildup in the body causes more stress on your liver and can help push your condition further, especially subcutaneous fat.
So, it’s time to get hot and sweaty.
Cardio fitness is where to start, your liver will love this. Studies show that you should get 30 minutes of aerobic exercise each day and it should also raise your heart rate. This will help burn fat, along with your new eating habits.
You also have to learn to engage your body’s musculature system more, now. Lifting weights and building muscle helps ensure that the body isn’t breaking it down for nutrients, combined with a healthy diet.
While there is no magic number for weight, body fat, and such, a good target is getting close to what is healthy weight for your age and height.
I started my journey a little before my diagnosis. I started light exercise as a way to help lower my high blood pressure. I bought a recumbent bike in March of 2021 and started slow. Once I received my diagnosis, I started pushing myself a bit more, I was just under 300 pounds at the time and I knew I had to get my weight down.
Once the weather warmed up, I started hiking. One of my favorite places in the area is a small hike called Pete’s Pound. The loop is roughly two miles in total and before my journey it took me over an hour to walk the entire thing with multiple stops on the hill. It was embarrassing. I started with a two mile hike every day for six days a week. Slowly, I built that up to four miles (two laps of the pond).
By summer of last year, I decided to take a huge leap and thought about adding jogging. Admittedly, I could only jog small distances at first but by the beginning of fall, I was jogging almost a mile. As of today, I can jog three miles in about 38 mins.
I never ran my entire life, except in gym class and begrudgingly, at that. So this was a change.
Today, I am 205 pounds and in some of the best health I have ever been in.
Benefits outweigh the losses
At present, cirrhosis cannot be reversed but it also doesn’t mean it’s a death sentence. Altering your diet and adding exercise can help.
Here is some info, moderating your intake of unhealthy fats can protect against steatorrhea, excess fat build up in the stool, which is a sign of malabsorption in the gut. Limiting your intake of salty foods helps promote a sodium balance and prevents fluid build up that can lead to a condition called ascites.
Getting enough calories and consuming a variety of foods helps in preventing malnutrition – which complicates cirrhosis. It also helps immune function, increases muscle mass, healing wounds, and overall quality of life.
It is not going to be easy, trust me from experience. Removing all the negative food types and habits from your life is as hard as living with cirrhosis. Removing alcohol and bad foods while relying on better food choices means that going out with friends can be a bit more challenging.
Make use of your doctor and a nutritionist to help you on your journey. This help will show you the best paths to take and help in sticking to long term changes. Keeping in touch with them will help ensure you are doing the best to make these changes and watch out for any other further complications that may arise. Making sure you meet your body’s new needs is essential. It is a constant process but even small changes will start to make a difference.
Is it all worth it?
In short, the answer is of course a yes. It’s not easy, but the benefits far outweigh the results. Staying healthy and taking care of your liver means you can do everything in your power to ensure your liver stays in a Compensated state versus Decompensated.
Compensated cirrhosis is when you don’t have any symptoms of cirrhosis. Decompensated cirrhosis is when your liver is having trouble functioning and the symptoms become more apparent.
Time for some hard numbers. If you have compensated cirrhosis, you can expect to live 12 years or more, depending on the lifestyle changes you make. If you go into decompensated status, you could have two years left on your life. That is a lot to take in all at once.
Seeing those statistics is what made me decide that I need to look at my life and how I impact those around me. I don’t want my loved ones to go through what I did seeing my mother develop into decompensated cirrhosis so quickly. So, I made the changes. I focused on them one day at a time. Each day I survived and continued my lifestyle changes was a point in the win column against cirrhosis. I would not let it beat me so easily.
Here I am, one year later. My doctors are impressed with the weight I have lost, changes I have made and what my blood tests show. My liver is still acting as if it is healthy and the chemicals in my bloodstream are all at normal levels. It isn’t easy, but I am not giving up. If I can do it, you can too. If you need an ear or have questions, be sure to comment below or send me a message at firstname.lastname@example.org.