Cirrhosis: 15 Questions You Need to Ask (But Were Afraid To)

Cirrhosis is a scary diagnosis, for sure. In one fell swoop you find out you have a disease that most consider a death sentence and the only thing running through your head is how long do you have or the doubt that the doctors have the right test results. It is during the time after your diagnosis that you often forget any question you may have that could be beneficial because you are solely focused on what you have been told. Over time, that shock starts to subside and you are left with a mountain of questions and you aren’t sure where to turn.

Today, I feel that sharing the top 15 questions that most cirrhosis patients have it’s important and can be beneficial for newly diagnoses patientsly and people who have be taking care of them. Joine me as I share Cirrhosis: 15 Questions You Need to Ask (But Were Afraid To).

Feeling overwhelmed and lost

It was December 24th, 2020 and I was standing in line at CVS getting my very first high blood pressure prescription filled when the phone rang. It was my doctor and he had my test results from my blood work. I remember him asking if I was sitting down and I lied and said yes. “Mr Simpkins, it seems that you may have cirrhosis. I feel that it is best if we set up an appointment with a liver specialist to check the diagnosis.”

I felt as if I was punched in the gut and that my knees were about to give out. My vision turned to stars and the room felt like it was spinning. All I could think was that there was no way this is true, while simultaneously realizing just how this all added up. My doctor said, “Mr Simpkins… Mr Simpkins, are you there?” I realized that I had gone quiet and it have been almost a minute of me not saying anything. I apologized and said that I was. After a bit, I said that if he felt it was the best course of action, then let’s do it. That was about all I could think of at that time.

I got my prescription and headed to the car. As I closed the door, it all came crashing down on me and I really wanted to hide myself away and cry, but that is not who I am. I took my moment of consolation, gathered my thoughts and started formulating my questions and a rough plan. Many of the questions in this article come from that soul searching. December 24th this year will mark five years since the initial diagnosis was offered and wasnt solidified until April of 2021.

So, let’s get to the meat of all of this and talk about the 15 questions you should ask about your cirrhosis diagnosis.

15 questions about cirrhosis

How do I know if I have liver cirrhosis?

The definitive reference test to diagnose liver cirrhosis is a liver biopsy. However, there are other tests that, looked at in combination, can diagnose liver cirrhosis; e.g., laboratory tests, ultrasound and transient hepatic elastography.

What are some of the symptoms of liver disease?

The most important thing to recognize about liver disease is that up to 50 percent of individuals with underlying liver disease have no symptoms. The most common symptoms are very non-specific and they include fatigue or excessive tiredness, lack of drive, and sometimes itching. Signs of liver disease that are more prominent are jaundice or yellowing of the eyes and skin, dark urine, very pale or light colored stool, bleeding from the GI tract, mental confusion, and retention of fluids in the abdomen or belly.

Is liver cirrhosis a cancer?

No, liver cirrhosis is not cancer. Cirrhosis is the presence of fibrous tissue or scars on the liver that alters its normal structure and function. However, liver cirrhosis has been associated with an increased risk of developing a particular type of liver cancer, hepatocellular carcinoma; so special monitoring must be done in people who have liver cirrhosis.

Can I have cirrhosis if I don’t drink alcohol?

Yes. Liver cirrhosis is caused by any prolonged damage to liver cells over time. Any disease that causes chronic inflammation of the liver can end up causing cirrhosis. Alcohol consumption is one of the main causes of cirrhosis, but not the only one. Viral hepatitis, non-alcoholic fatty liver disease and autoimmune diseases can also cause cirrhosis. What is more, the last two have increased in recent years.

Can I still drink alcohol with liver disease?

No amount of alcohol is considered safe in patients with cirrhosis. They should avoid all alcohol use.

What can I take for the pain if I have cirrhosis?

The use of non-steroidal anti-inflammatory drugs (NSAIDs) is not recommended in all patients with liver cirrhosis, as it can cause a deterioration in renal function and the appearance of complications such as ascites. For the same reason, the use of metamizole (Nolotil) is discouraged. For the symptomatic treatment of pain, patients with cirrhosis should take paracetamol in moderate doses of no more than 2-3 grams per day.

Will taking supplements help my cirrhosis?

Although certain herbal supplements such as milk thistle have been tried in liver disease, there’s no evidence to suggest that herbal supplements or any other alternative therapies can effectively treat cirrhosis. However, there is a chance of herbal supplements causing harm to the liver, sometimes to the point of liver failure requiring a liver transplant. So we recommend avoiding any and all herbal supplements.

Are pain medications safe to take with liver disease?

Well, some pain medications are safe to take in certain doses, and some are not. For instance, nonsteroidal, anti-inflammatory drugs such as ibuprofen and naproxen, they should be avoided in patients with cirrhosis, because when the liver is scarred, there’s a greater chance of hurting the kidneys with these types of medications. Narcotics such as oxycodone are not a good idea either as they can be quite problematic with certain complications of cirrhosis. Acetaminophen, on the other hand, is safe to take, but at smaller doses. For pain relief in cirrhosis, we recommend taking acetaminophen up to two grams a day. So that’s four extra strength tablets within a 24-hour period.

Why are vaccines important with cirrhosis?

Well, vaccinations are an important preventive measure in patients with cirrhosis because when the liver is scarred, patients are at higher risk of complications from certain infections. For patients with cirrhosis, we recommend vaccination against hepatitis A and B. We also recommend the pneumococcal vaccine, which is commonly referred to as the pneumonia vaccine, for all adult patients with cirrhosis. And patients with cirrhosis should also get the annual flu shot.

Can the liver regenerate if I have cirrhosis?

Removing or controlling cirrhosis triggers (such as alcohol use, metabolic or autoimmune factors or viral hepatitis) can stop progression of liver disease and lead to a regression of the changes caused up to that point. However, cirrhosis occurs after a long period of continuous damage to liver cells, which makes it very difficult for these lesions to be completely reversed. Therefore, in most cases, once established, the disease is not reversible.

Is there any treatment to cure cirrhosis?

A liver transplant is the only curative treatment for cirrhosis and is appropriate in only some cases. Eliminating or reducing the triggering factor of the disease is essential to control and prevent progression of the disease. Other drugs, such as statins or albumin, are being evaluated as possible new treatments for patients with cirrhosis.

How can I slow or reverse cirrhosis?

There are instances when damage to the liver can be slowed although complete reversal generally does not happen. For example, if a patient has cirrhosis due to alcohol use, we know that completely abstaining from alcohol can improve the function of the liver. Similarly, weight loss can help improve fatty liver disease. And cirrhosis from hepatitis C was a major reason patients required liver transplants, but we now have medications, antiviral drugs, that are very effective at curing it. There’s evidence to suggest that getting rid of the hepatitis C can slow or maybe even help reverse some of the damage done. But there are instances when the liver disease is too advanced and medical interventions cannot reverse the process and that’s when we consider liver transplantation.

How can diet help manage my cirrhosis?

So it’s important to eat an overall healthy diet that is balanced and full of fruits and vegetables. It’s important to have protein intake, and that can be from lean sources of protein such as beans or lentils, and salt restriction is also very important. Limit the amount of salt in your diet to less than two grams of total intake a day.

Do I have to follow a special diet if I have been diagnosed with cirrhosis?

In general, a varied, balanced diet is recommended. In advanced stages, when the disease is decompensated, it may be necessary to follow a low-salt diet, but this will always be supervised by the medical team.

How can I be the best partner to my medical team?

We know that this is tough for our patients and their loved ones and we want to do everything we can to make the process seamless for our patients. It’s helpful for us if we have as much information about your condition as possible–any prior medical therapies, any new symptoms or signs, any medications, herbal supplements or any other medical conditions that you may have. Collect all of this information and share it with your liver team. Be open and transparent with your team. Never hesitate to ask your medical team any questions or concerns you have. Being informed makes all the difference. Thanks for your time, and we wish you well.

Gearing up for the fight

Make no mistake about this but your diagnosis is the start of your battle. This is where you need to make sure you have the right things to succeed and sustain yourself. Remember that knowledge is power and the more you have the more powerful your resources are for combatting this disease. Make sure that you are keeping your medical team informed of anything that stands out to you. If you have question, do not hesitate to ask them. You will need to get over the fact that you may feel like you are bugging them with your questions. This is your health and you need to be in the driver’s seat of it. Research what you are told to ensure you understand what it is and how it relates to your treatment and your life.

Did any of the question I presented feel like ones you have? Maybe you are a caregiver to a cirrhosis patient, do any of these help you understand the situation better or maybe give you the information to help them understand their diagnosis better? Are there questions that I didnt include that you are curious about? Let me know in the comments below.

Thank you to each and everyone of you who make this blog what it is. I simoly could not continue to do this without your support and interactions. You are GayintheCLE.

Cirrhosis: 15 Questions You Need to Ask (But Were Afraid To)

Feeling overwhelmed and lost