**Disclaimer – sorry this post is late, this week. This is an informational post and is designed so you can jump around to what is most important to you at anytime. Make sure to use the contents to help you find what you are looking for.
Finding out I had cirrhosis was the most influential and single most scariest thing I have gone through, so far, in my life. I went from denial to disbelief to acceptance, it was an emotional rollercoaster. I had a million questions but I could not seem to ask a single one, in my first couple visits. Finally, I got over that and every visit I have questions and receive answers, where they can be provided.
Nothing will prepare you for this diagnosis and what comes after it, but I have worked to put together a FAQ of the most common questions I and other have about receiving this diagnosis. The first thing I want you to understand is that while there is not a cure, at present, for cirrhosis, with proper management and changes in lifestyle you can go on those leave a quite healthy life. So let’s get into it with Understanding Cirrhosis: A Comprehensive FAQ.
- Cirrhosis FAQ
- Understanding Cirrhosis
- Treatment and management
- What are my treatment options?
- Do I need to stop drinking alcohol?
- Should I quit smoking?Â
- What dietary changes should I make?
- Will I need a liver transplant?
- How often will I need to see my doctor?Â
- What tests will I need to have?Â
- What are the potential complications of cirrhosis?Â
- How can I prevent complications?Â
- Medications
- Monitoring and follow-up
- Lifestyle changes
- Diet and nutrition
- Travel
- Emotional well-being
- How can I cope with this diagnosis?Â
- What can I do to maintain a positive outlook?Â
- Is it normal to feel overwhelmed or anxious?Â
- How can I cope with the emotional impact of this diagnosis?Â
- Am I going to die?Â
- How can I manage my fear and uncertainty?Â
- Where can I find a support group?Â
- How can I maintain my social connections?Â
- Is it okay to feel isolated or lonely?Â
- How can I prioritize self-care?Â
- What can I do to improve my sleep?Â
- Is it okay to feel angry or resentful?Â
- End of life planning/Future Planning
- Support and resources
- Keeping it real
Cirrhosis FAQ
You just received a diagnosis that you have cirrhosis. I know you are probably thinking that your life has just ended, but I am here to tell you that it has only begun. I was diagnosed in 2021 with cirrhosis and I have been doing everything I can to stay healthy and my doctors tell me how much it shows at each visit I have. You, too, can implement these changes and ensure that your health stays as good as possible. But let’s get through some of the most common questions that cirrhosis patients ask.
Understanding Cirrhosis
What caused my cirrhosis?
Cirrhosis can be caused by various factors, including chronic alcohol abuse, viral hepatitis, fatty liver disease, and certain medications.
How advanced is my cirrhosis?
Your doctor will use imaging tests and blood tests to determine the stage of your cirrhosis. There are a multitude of tests used to determine how advanced your situation is. You will hear things like MELD score being thrown around. These are all indicators of your current situation.
Can my cirrhosis be reversed?
While some early-stage cirrhosis can be reversed, advanced cirrhosis is often irreversible. For advanced cirrhosis, there only option may be a transplant.
Treatment and management
What are my treatment options?
Treatment may involve lifestyle changes, medications, procedures, or in severe cases, a liver transplant.
Do I need to stop drinking alcohol?
Yes, if alcohol caused your cirrhosis, you must stop drinking completely. Let’s just say that if you have cirrhosis, stopping drinking is the primary thing to be done. If you have NAFLD (non-fatty liver disease), then you also should stop drinking. Drinking only hurts the liver more and more, if you are already weakened, then your chances of damage increase.
Should I quit smoking?
Smoking can further damage your liver and increase your risk of complications.
What dietary changes should I make?
You may need to follow a low-sodium diet and limit your intake of certain foods. I cannot stress this enough, you need to speak to your medical team; hepatologist, nutritionist, primary care physician, and maybe someone who can assist you with working out. Diets like the Mediterranean Diet are beneficial to cirrhosis patients due to its limiting of salt, fats, and bad components of food.
Will I need a liver transplant?
Whether you need a liver transplant depends on the severity of your cirrhosis and your overall health. Save the worry for when you actually need it and, otherwise, focus on doing the best you can to say healthy.
How often will I need to see my doctor?
Your doctor will schedule regular follow-up appointments to monitor your condition and adjust your treatment as needed. Be prepared that you may visit the doctors more frequently in the beginning and if you are staying more healthy, those visits will taper off to every six months or so. YMMV
What tests will I need to have?
You may need regular blood tests, ultrasounds, or other tests to monitor your liver function. For me, I frequently go for blood tests, ultrasounds, fibroscans, and endoscopies. At present, most are every six months. There are a few that I only gone once a year for.
What are the potential complications of cirrhosis?
Complications can include ascites (fluid buildup in the abdomen), esophageal varices (enlarged blood vessels in the esophagus), hepatic encephalopathy (brain dysfunction), and liver cancer. Your liver is one of the most complex organs in your body and does so many things. As cirrhosis develops, the amount of complications also rise. One major thing to remember is that you are now immunocompromised and need to be aware of staying away from people who are sick, washing your hands frequently, and paying attention to expiration dates. These will all help you stay more healthy with less complications.
How can I prevent complications?
Following your doctor’s recommendations for treatment and lifestyle changes can help reduce your risk of complications. Some complications are just the new norm. You will probably get sick more often, so it is best to make sure you are up to date on any and all vaccinations you can get.
Medications
What medications will I need to take?
Your doctor may prescribe medications to manage your symptoms, prevent complications, or treat underlying conditions. I wont discuss specifics here, as those things can vary by doctors, your condition, and any new treatments that may be found, over time
Can I take over-the-counter medications?
It’s important to check with your doctor before taking any over-the-counter medications, as some can interact with your prescription medications. This is one of the harder ones to worry over. For me, personally, I have stopped taking anything over the counter, unless advised to by my doctor. Then, I follow the directions for the product to the letter to ensure no adverse side effects. An example is Tylenol, which is bad for the liver. By following the prescribed dosage or less, there are less chances of negative impacts from it.
Monitoring and follow-up
How often will I need to see my doctor?
Your doctor will schedule regular follow-up appointments to monitor your condition and adjust your treatment as needed. This will all be decided by your medical team. See Treatment and Management section for more.
What tests will I need to have?
You may need regular blood tests, ultrasounds, or other tests to monitor your liver function. See Treatment and Management section for more.
Lifestyle changes
How can I manage fatigue?
This one is a hard one for me. Fatigue will come at you from out of nowhere. The things that never seemed to bother you hit you hard now. Remember your limits and dont be afraid to take a pause to rest. And I cannot stress enough that getting a good night’s rest will be super important for this, as well as keeping you healthy, and mentally focused. With that, rest, a balanced diet, and exercise can help manage fatigue.
What about itching?
Itching can be a symptom of cirrhosis; discuss it with your doctor for treatment options. Cirrhosis seems to cause issues with water all over the place, from my experience. Meaning, you are going to be more prone for dry skin, which leads to itching. Bile build up can also cause you to feel itchy. Your liver is damaged from cirrhosis, it may become harder for it to process bile acids from your body. As they build up, it causes you to feel itchy. There are also medications that can lead to feeling itchy as well. If it is. too much, talk to your doctor
How will cirrhosis affect my sex drive?
Some of the big things that cirrhosis will affect is fatigue, hormonal changes, emotional factors, and physical limitations. As your liver becomes more damaged from cirrhosis, it can greatly affect the production of various hormones which can have an impact on your sex drive and libido. Make sure you are keeping your partner advised of any issues you are facing so that they are aware of the driving factors. Due to the amount of emotion your diagnosis and this disease will cause, it is guaranteed that it will have some affect on your sex drive. And remember, if you are having any difficulty walking or experience any pain, it can make sexual activity more challenging.
How much exercise should I do?
Consult with your doctor to determine a suitable exercise plan. Generally, low-impact exercises like walking, swimming, or yoga are recommended. It is essential to keep a strength building routine as well as a cardiovascular routine. These two combined will hope with mobility/musclar issues as well as helping maintain a good body weight. Start low and slow, remember that walking is one of the best, low impact cardiovascular exercises you can do and it is great at helping you shed weight.
Should I avoid certain exercises?
Avoid strenuous activities that can put strain on your liver, such as heavy lifting or high-intensity workouts. As always, check with your medical team on where you stand and what you are able to do. Advanced conditions may have issues with running, intense hiking, and such.
How can I stay motivated to exercise?
Find activities you enjoy and consider joining a support group or exercise class. This one has been a little easier for me due to how I look at it. I run fifteen miles a week and I keep telling myself I am out there running for the cirrhosis patients who cannot. I get to work out each and every day, a luxury some cannot afford. That keeps me going because one day I may not be able to, any longer.
Diet and nutrition
What foods should I avoid?
This will vary greatly depending on where you are, healthwise. If your condition is advanced, there are considerations that can cause big changes to your diet. You may need to limit your intake of salty foods, processed foods, and alcohol. As a rule, it is best to restrict your sodium intake to as low as possible. Pay attention to added sugars, bad fats, and simple carbs can be problems.
How can I ensure I’m getting enough nutrients?
Working with a registered dietitian can help you create a balanced diet that meets your nutritional needs. You can also use calorie or macro nutrient tracking apps to accomplish this, one of my favorite apps is called Lose It! Lose It! allows you to add your own recipes and even had items from most grocery stores and restaurants in the United States.
Should I take supplements?
Should I travel domestically or internationally?
Your doctor may recommend certain supplements to help address nutrient deficiencies. Some supplements can be toxic for your liver, so make sure you check first.
What foods should I avoid?
People with cirrhosis often need to limit their intake of salty foods, processed foods, and alcohol. Add to this sodium, excessive fats and sugars.
Should I follow a specific diet?
Your doctor may recommend a specific diet, such as a low-sodium diet or a protein-restricted diet. One diet that will help manage most of your issues is the Mediterranean Diet. It focuses on whole food, low sodium, and very vegetable friendly.
How can I manage weight gain?
Cirrhosis can make it difficult to manage weight. Your doctor can provide guidance on how to maintain a healthy weight. One way to do this is to ensure you are eating smaller meals more frequently. Doing this combined with being aware of portion size can help you manage your current weight and keep it where it is.
How can I avoid constipation or diarrhea?
Cirrhosis can affect your digestive system, leading to constipation or diarrhea. Your doctor can provide guidance on how to manage these symptoms.
Can I still eat out?
Yes, you can still eat out, but be mindful of portion sizes and choose healthy options. This will require a bit of effort in knowing how much of the bad things you need to avoid. A safe way to operate is if it is fried or overly processed, you should avoid it.
Travel
Can I still travel?
Traveling is possible with cirrhosis, but it’s important to plan carefully and consult with your doctor before making any trips. Wear compression socks when you travel as this will help with blood circulation in your legs, which tends to stagnate from extended air travel.
What should I pack when traveling?
Be sure to pack any necessary medications, medical records, and a list of your doctor’s contact information.
Both domestic and international travel can be possible, but it’s important to consider factors such as the availability of medical facilities, the length of the trip, and your overall health. If you are traveling internationally, make sure you check out where the medical facilities are, in relation to your stay. Also make sure they may handle any issues that arise, due to complications.
What should I do in case of a medical emergency while traveling?
It’s important to have a plan in place in case of a medical emergency. This may include carrying a medical alert bracelet or necklace, having a list of emergency contacts, and knowing the location of nearby hospitals.
How can I stay healthy while traveling?
Be sure to get enough rest, stay hydrated, and follow your doctor’s recommendations for medications and dietary restrictions. Make sure you are current for any sickness vaccinations like flu, Covid, and such. Also make sure you check into what vaccinations may be recommended for the area you are traveling to. Then take those recommendations and check them, with you doctors, for availability.
What are some travel tips for people with cirrhosis?
Some tips include choosing a destination with good medical facilities, avoiding crowded areas, and being mindful of your physical limitations. Pack and/or wear compression socks. Sitting for long periods of time in airplanes, you deal with constant pressure changes and varying heights. These situations can lead to a condition called deep vein thrombosis. Sitting for long periods of time can contribute to this. Wearing compression socks aids in circulation and you should also consider getting up to stretch your legs frequently — especially on long haul flights.
Emotional well-being
How can I cope with this diagnosis?
Talking to a therapist, joining a support group, and practicing stress management techniques can help. I started therapy just after May diagnosis and my therapist has been very understanding and helpful in dealing with the multitude of things that arise, emotionally.
What can I do to maintain a positive outlook?
Focus on the things you can control, such as your diet, exercise, and stress management. Cirrhosis is overwhelming, you cant let it beat you emotionally. Engage in your hobbies or start new ones. Stay away from doom scrolling on the internet, as that leads more to being negative. Reach out for help if you feel things are too overwhelming.
Is it normal to feel overwhelmed or anxious?
It’s completely normal to experience a range of emotions after receiving a diagnosis of cirrhosis. Anxiety has massively increased for me, since my diagnosis. Some of it may be directly related to the disease but the majority can come from worry and fear about things you cannot control.
How can I cope with the emotional impact of this diagnosis?
Talking to a therapist, joining a support group, and practicing stress management techniques can help. Your loved ones can help you keep a positive outline and deal with the emotional impact. A strong support group is needed, you cant do this completely alone.
Am I going to die?
Here is a simple truth, we are all going to die. Yes, that sounds tragic but it is nonetheless true. While cirrhosis can be a serious condition, many people with cirrhosis live long and fulfilling lives. Getting in front of your disease will help. When you know what to expect and how to fight it, you will do everything you need to keep yourself above ground, for as long as you can control it. It is best to try not to focus on the end stages until there is a need.
How can I manage my fear and uncertainty?
Talking to a therapist, practicing mindfulness, and seeking support from loved ones can help.
Where can I find a support group?
There are many online and in-person support groups available. Your healthcare provider can help you find one. There are a wealth of online groups that are there to help you with your feelings while not telling you what to do. I actually belong to a /cirrhosis group on Reddit and it has been massively helpful. And the good thing is that it is designed for newly diagnosed patients, so as you hang around you will be able to help newer people, as they come along.
How can I maintain my social connections?
Make an effort to stay connected with friends and family. You might also consider joining social groups or clubs. Staying in your head isn’t beneficial, social outings will help manage depression, anxiety, and fear. Dont let you friends miss out on being with you simply because you have this diagnosis. You can still hang out with them and do most of the things you used to do. You can find new ways of having fun with them, also.
Is it okay to feel isolated or lonely?
It’s completely normal to feel isolated or lonely after a diagnosis. Talking to others who understand what you’re going through can help.
How can I prioritize self-care?
Make time for activities that you enjoy and that help you relax. Take time to rest when you need it. Remember, there is only one of you and your self-care is paramount in how you manage and deal with this disease.
What can I do to improve my sleep?
Establishing a regular sleep routine and creating a relaxing bedtime environment can help improve sleep. You can also limit your caffeine and food intake before bed. Work on winding down routines for bed. Reduce phone time before bed, make your bedroom conducive for sleeping in a way that works for you.
Is it okay to feel angry or resentful?
It’s completely normal to experience these emotions. Talking to a therapist can help you process and manage them. Each day you are going to be mad about your illness. You will probably beat yourself up for the choices you made and how they got you here. Remember, those things are in the past and you cannot change them. All you can do is make sure you dont do them in the future. Recognize you are upset about the situation, acknowledge how you feel about it, and then let it go and focus on better thoughts and how to minimize them.
End of life planning/Future Planning
How can I plan for the future?
It’s important to discuss your long-term goals and concerns with your healthcare provider. They can help you plan for the future, including making decisions about your healthcare, finances, and end-of-life care.
Should I consider a living will or advance directive?
A living will or advance directive can help ensure your wishes are followed regarding your medical care. Not having one could lead to someone making decisions for you that are not in your best interest or wants.
Support and resources
Where can I find support groups for people with cirrhosis?
There are many online and in-person support groups available. Your healthcare provider can help you find one.
What resources are available to help me manage my condition?
There are many resources available, including books, websites, and online communities. Look at what you can and before you add anything new to what you do, check with your doctor to make sure it is beneficial for you and your treatment plan.
Keeping it real
There you have it, a quick resource for the most common questions that newly diagnosed cirrhosis patients have. The key to remember is that no two diagnosis are the same, as various factors in the body can cause different outcomes. The basics are the same, however. Be mindful of sodium, sugar, bad fats, and simple carbs can be detrimental to your overall health. Make sure to check with your medical team before you try any new medicine or take supplements. For years, we have been told that cirrhosis is a death sentence, while the damage to the liver may not be fully reversible, you can live an active and long life and still have cirrhosis. Just make sure you are following the treatment plan that you and your medical team worked on, keep them apprised of any changes you may notice, and get that needed support.
What about you, were you or someone you know recently diagnosed with cirrhosis? Were there any questions you have that I may have missed? What concerns do you have? I am happy to share information that I have and things that have worked for me but please check with your doctor before you attempt any of them. Thank you for taking the time to read this and be a part of GayintheCLE. You are the reason this blog exists.
Gay in the CLE 