Archive for the Patient Category

Study Landing Page

Are you a patient with cirrhosis or a caregiver?

What is the Goal of This Study?

This study is recruiting people with cirrhosis and their loved ones in order to understand if a website with educational materials can help improve their knowledge.

The study involves you reading some education on cirrhosis, including written text and videos and answering questions to check your knowledge.

Frequently Asked Questions

Participation in this study will help us understand if the educational materials we’ve developed are helpful to improve knowledge for patients with cirrhosis and their loved ones.

In order to keep track of the learning modules that you have completed, you will be asked to provide a username and email. The information that you will share will remain strictly confidential and will be used solely for the purposes of this research. All efforts will be made to keep your information as secure as possible, but as this interaction happens online, there is always a risk of the information being exposed. The only people who will have access to the research data are the investigators listed above and their research assistants. Your answers to open-ended questions may be used word-for-word in presentations and publications but you will not be identified. Results will be published in pooled (aggregate) format.

Each module should take you approximately 5-10 minutes to complete.

You will not receive any compensation from participating in this study. It is possible that will experience no benefit for participating in this study. The feedback you provide will be used to make improvements to the educational materials to help other patients with cirrhosis and their loved ones.

You are under no obligation to participate and if you choose to participate, you may refuse to answer questions that you do not want to answer. If you choose to have your data withdrawn from the study, this will be possible only before the data are analyzed. You can email the study email at [email protected] and provide them with the email you enrolled with if you want to have your study data removed.

Who are the researchers?

Dr. Puneeta Tandon, Principal Investigator

Dr. Ashley Hyde, Postdoctoral Fellow

Emily Johnson, Masters Student

Register

Resources to help you on your journey with cirrhosis:

  • Learn from medical experts about how cirrhosis affects the body. 
  • Learn about common treatments and medical procedures.
  • Watch short videos and read topics about living well with cirrhosis like nutrition, exercise and stress.

 

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We know that living with cirrhosis can be tough

That’s why we created this website to help patients and their families navigate the challenges.

Our website contains content for patients with cirrhosis and their families, created by a large team of physicians, nurses, allied health professionals and patient partners.

You’ll find resources on topics like nutrition, exercise, mental health, and more.

Frequently asked questions

What is the benefit of using this site?

We know that finding credible information online can be challenging. The information on this website was developed by worldwide experts on cirrhosis and in partnership with people currently living with cirrhosis. There are videos and written information on a range of topics like symptoms, treatments, healthy living with cirrhosis and procedures you may encounter.

What kinds of information is covered?

This website has a range of information for patients and families. It includes how the liver works, the stages and causes of cirrhosis, common complications and how to mange symptoms like itching, pain, sleep problems and muscle cramps. We also included information on nutrition and exercise for people with cirrhosis, medication and caregiver support.

Is this a substitute for medical advice?

This information is not intended to replace advice from your healthcare team. They know your medical situation best. Always follow your healthcare team’s advice.

Why should I create an account?

Cirrhosis is a lifelong condition that can be challenging to manage. You or your family may have many questions and our goal is to help you stay up to date with current information.

This website has learning modules on important topics for people living with cirrhosis. By creating an account, you can keep track of your learning, get certificates of completion, and get entered into a raffle to win prizes. You can also help us improve this site by providing direct feedback.

Who is the team behind Cirrhosis Care?

Stay up to date! Sign up for an account below.

Liver-Friendly Cooking

Cooking: Tips

Home cooking is the only and most reliable way to eat high protein and low sodium foods. Home cooking is also cheaper than buying “ready made” foods or take out. Homemade meals can take more time but, with some practice and tips, will become quicker and less involved.

For many folks living with cirrhosis, making liver-friendly meals and snacks can be difficult. In this 5 min video, learn about Barb and Craig’s “low sodium” home cooking journey.

Favourites of Barb and Craig

Favourite Spice: Barb typically uses a combination of spices depending on the dish.  The Club House Salt Free Original Vegetable & Herb Medley is one that she frequently uses.

Favourite Recipe: Honey and Lime Glazed Chicken with Lemon Scented Orzo is just one of their many favourites.

Favourite Food Made Ahead and Frozen: Barb is a firm believer in doubling her cooking recipes. Half of the food is eaten the same day while other half is frozen for another day.  Suggestions include spaghetti sauce, chili, meatballs or baked chicken pieces.

Favourite Snack: Things  to nibble on like carrot sticks, stuffed celery with peanut butter or egg salad, spicy chickpeas or rosemary nuts.

Best Quick Dinner: (1) Grilled pork chops with rice, (2) frozen cooked chicken pieces and a sauce or (3) previously frozen chili.

Most important pantry items: Cans (with no salt added) of: tomatoes, tomato sauces, black beans, kidney beans and chickpeas. These items are versatile. They are used in many recipes or can be served as side dishes to complement a main dish.

What does a high protein, low sodium meal or snack look like?

That is a great question but it is difficult to answer. Everyone has different tastes, preferences, and cooking skills.

Here are some good examples of high protein, low sodium meals and snacks:

  • Meals:
    • Pizza
      • Yes! Home-made pizza can be liver-friendly
    • (Non) Vegetarian Chili
  • Snacks:
    • Fruit Smoothie with or without protein powder
    • Breakfast Bites
How do I make tasty, liver-friendly dishes?

For this project, we partnered with the Research Culinary Team at the Northern Alberta Institute for Technology (NAIT) and was funded by the Canadian Institutes of Health Research (CIHR).

Chef Maynard and his team created liver-friendly recipes that are high in protein and low in sodium. Delicious and easy to make, they will be family favorites!

Each video includes step-by step instructions and variations. Recipes are listed beside each video and can be printed.

For experienced cooks, Chef Maynard gives tips about:

  • Altering recipes to satisfy different tastes
  • Food substitutions and preferences
  • Dietary restrictions

Serving suggestions and storage suggestions are also provided. Freezing cooked meals and leftovers make for quick and easy dinners during the week.

“How To” Videos with Recipes for Meals and Snacks

Breakfast

Comfort Foods

See the “Low Sodium Baking” video for how to make focaccia bread. It is used for the pizza base.

Casserole and Sheet Pan Meals

Cooking Vegetarian

Reinventing Leftovers

Low Sodium Baking – Focaccia Bread

Meal Supplements

Marinades and Rubs

Please refer to the video.

“How To” Read Nutrition Labels

This work was supported by the Canadian Institutes of Health Research.

CIHR's visual identity - CIHR

This information is not intended to replace advice from your healthcare team.

They know your medical situation best.

Always follow your healthcare team’s advice.

Last reviewed June 8, 2021

Care Partner Support

Care Partners

As a care partner of someone living with cirrhosis, you may share many of the same emotions the person with cirrhosis is experiencing: fear, isolation, or even anger. To avoid burnout, it’s important to take care of yourself too.

What to Expect

Depending on how well the person living with cirrhosis is, you many need to play a variety of roles while providing support. Some people with cirrhosis don’t need care support, but if their condition gets worse and especially for people with hepatic encephalopathy, a care partner is often needed. Your care partner role may change over time, and even day to day, as the condition of the person living with cirrhosis changes. You may need to adjust the level of care partnering to meet the changing needs of the person living with cirrhosis.

It’s important to encourage independence for the person living with cirrhosis, but also support and help them with tasks as needed. Finding the balance is key. You might need to support the person living with cirrhosis by helping with physical activities, mental health, psycho-social well-being, spiritual well-being and managing finances:

Physical activities
  • Medications (using a schedule, giving reminders, keeping track of need of refills).
  • Watching for signs and symptoms of cirrhosis complications and knowing when to get help.
  • Learn about cirrhosis on this page so you feel confident knowing what to watch for.
  • Keeping track of medical records and appointments.
  • Organizing transportation to medical appointments. It’s helpful to attend the appointment as well, to help your loved one remember and understand what was discussed.
  • Basic everyday activities: feeding, bathing, going to the bathroom, grooming, dressing, walking, chores and errands.
  • Nutrition and managing a diet as potentially prescribed. Learn about eating well with cirrhosis on this page
  • Thinking about getting health aids in place before they are actually needed so you are prepared (shower chair, walker, bed rail, etc.).
Mental health:
  • Managing the stress of the person living with cirrhosis. If stress occurs too often or lasts too long, it may make a health problem worse. Find tips on stress management here.
  • Being supportive and available to help while encouraging as much independence as possible.
  • Knowing when to step back and let them do more for themselves as they are able.
Psycho-social well-being:
  • Providing support and companionship. You might not be actively doing anything, but the fact that they have somebody there with them during such a vulnerable time could do wonders for them.
  • Being their advocate and voice.
  • Maintaining support with others, such as friends, other family members, and community members or organizations.
Spiritual well-being:
  • Maintaining spiritual practices and connection with religious or spiritual groups.
Managing finances:
  • Assist with paying bills, developing/keeping a budget, etc.

 

Tips for Your Self Care

Self-care
  • Take care of your own emotional and physical needs. It is crucial to remember that you also need a break from the disease and the toll it can take on you.
  • Continuing to do the things that bring you joy.
  • Aim to take one day at a time and make the most out of every situation.
  • Understand that frustration placed on you by the person with cirrhosis is not purposeful or personal. The illness process takes a significant toll on one’s physical and emotional well-being.
  • Write down (journal) your thoughts and feelings.
  • Find coping skills to help you deal with and work through stressors. Visit this website to add more coping strategies to your list!
  • Take one day at a time and make the most out of every situation.
Ask for help
  • It is okay to ask for help. Seek out others who could possibly share the load to avoid burnout
Include others
  • Consider weekly meetings to keep others informed on important matters and to check in on how everyone is feeling.
Knowledge is power
  • Read a lot and gain as much insight about the person’s condition as possible.
  • Plan for the worst-case scenario but always hope for the best.
  • Reading about others’ care partnering experiences can be informative and provide perspective.
Informal and formal support
  • Talking with other care partners can provide not only practical caregiving information, but also a sense of shared experience and emotional support. Knowing you are not alone in this journey.
  • Formal support groups for care partners. It can be helpful knowing what others have experienced and what to expect.

FAQs

What can I expect if the disease of the person living with cirrhosis becomes advanced?

If the person living with cirrhosis becomes very sick or has difficulty getting dressed, walking or bathing, you may be able to receive home care services. Talk to your healthcare team to learn more about this, or explore self-referral options in your community.

How do I make the most out of every appointment?

Before the appointment

  • Help the person living with cirrhosis make a folder with their medical information (medical conditions, prior surgeries, medications, etc.) to bring to appointments.
  • Write down any new symptoms (and when they started), as well as questions/concerns.
  • Review any instructions given prior to the appointment(food restrictions, when to arrive, etc.).

During the appointment

  • Pay close attention to what is being discussed in case the person with cirrhosis forgets afterward.
  • Let the healthcare provider know about any new symptoms, questions, or concerns.
  • Ask for clarification of any medical terms, test results, or treatments that you don’t understand.
  • Understand what the next steps should be before you leave.

Questions to ask

  • How will this (condition, treatment, etc.) affect my loved one’s daily life?
  • What type of diet should the person with cirrhosis be following?
  • Are there any activities that can help? What activities should be avoided?
  • How can we contact you in with questions?
  • Is there anything else we should be doing?
How do I find support?
  • Ask your healthcare team to help you find the resources you need.
  • If your financial circumstances change, payments may become difficult to manage. Check with your bank or financial advisor to see if they may be able to provide some short-term solutions.
  • Many employers belong to an Employee Assistance Program (EAP) and provide free counselling services to employees. Contact your benefits advisor at your workplace for details on how to access this support.
  • Check out the resource links below.

References:

The information on this page was adapted (with permission) from the references below, by the Cirrhosis Care Alberta project team (physicians, nurse practitioners, registered nurses, registered dietitians, physiotherapists, pharmacists, and patient advisors).

This information is not intended to replace advice from your healthcare team. They know your medical situation best. Always follow your healthcare team’s advice.

References: 

    1. Canadian Liver Foundation
Last reviewed March 15, 2021

Stress Management

Everyone can benefit from learning ways to manage stress. This includes people with chronic medical conditions, like cirrhosis.

For more information, check out the videos below from My Health Alberta, or visit their website topic by clicking here: Stress Management

How Your Body Reacts to Stress

Stress Management: Relaxing Your Muscles

Stress Management: Progressive Muscle Relaxation

Stress Management: Roll Breathing

Stress Management: Using Yoga to Relax

References:

The information on this page was adapted (with permission) from the references below, by the Cirrhosis Care Alberta project team (physicians, nurse practitioners, registered nurses, registered dietitians, physiotherapists, pharmacists, and patient advisors).

This information is not intended to replace advice from your healthcare team. They know your medical situation best. Always follow your healthcare team’s advice.

References: 

  1. US Department of Veterans Affairs, Veterans Health Administration 
  2. Canadian Liver Foundation
Last reviewed March 15, 2021

Depression

Depression is a condition that can cause symptoms like feeling sad, hopeless and tired. Anyone can get depression. Feelings of depression are common in people with chronic condition, like cirrhosis. Having depression can impact many parts of your life.

For more information, check out the videos below from My Health Alberta, or visit their website topic by clicking here>Depression

Depression Is Common

Depression: How it Affects Your Body

Depression: Balancing Brain Chemicals

Treatment For Depression

Counseling for Depression

Depression Medicines

References:

The information on this page was adapted (with permission) from the references below, by the Cirrhosis Care Alberta project team (physicians, nurse practitioners, registered nurses, registered dietitians, physiotherapists, pharmacists, and patient advisors).

This information is not intended to replace advice from your healthcare team. They know your medical situation best. Always follow your healthcare team’s advice.

References: 

  1. US Department of Veterans Affairs, Veterans Health Administration 
  2. Canadian Liver Foundation
Last reviewed March 15, 2021

Before you Start

 If you experience any of the following, do not exercise or stop immediately:

  • Racing pulse
  • Fever
  • Suddenly short of breath or breathless
  • Chest pain, light headed, or dizzy
  • Headache or blurred vision
  • Nausea
  • Confusion or disorientation

Excessively sore muscles for more than 24 hours after an exercise session indicates that the intensity of the exercise needs to be decreased. Allow 1 to 2 days of rest before exercising the same sore muscle group again at the lower intensity level.

People living with cirrhosis tend to avoid exercise for many reasons. Gradually, the muscles weaken and common tasks become more and more difficult to do. Loss of muscle strength affects balance, mobility, and can interfere with social activities and hobbies. Performing the right set of exercises at the right intensity can minimize muscle loss and weakness. This can help to maintain or increase your current activities.

Most people with cirrhosis can and should exercise regularly
Talk to your physician about starting an exercise program before you begin.

THIS EXERCISE PROGRAM IS NOT MEDICAL ADVICE

This website should not be relied upon or serve as a replacement for medical advice from your doctor(s). Do not disregard or delay or discontinue your ongoing medical treatment because of your use of this website. Your continued treatment by your qualified medical practitioners is important to your health. If you have any concerns, address these with your medical team.

Any medical guidelines or recommendations from your medical practitioner regarding exercise in liver disease supersedes any information on this website. The information on the website is provided on an “as is” basis without any representations or warranties.

Getting Started

Before starting the programming, please check with your doctor to ensure that this is safe for you and to assess your risk for veins in the food pipe (esophageal varices). The Introductory Level exercises are a safe starting point for most patients with cirrhosis as the exertion level and intensity are similar to performing every day activities of daily living (e.g., walking, dressing, bathing).
An exercise program specific for patients with cirrhosis has four components:

Aerobic
Improves cardiovascular health, examples are walking or swimming. This can be any activity including walking, jogging, dancing, or climbing stairs. The key is to elevate the heart rate to the point where you are moderately short of breath but can still participate in a conversation. If needed, take a rest break as needed and then continue the activity. The goal is to to complete 150 minutes of aerobic activity each week. If you are just beginning to exercise, slowly build up to this by adding 5-10 minutes each week.

Muscle Strengthening
Resistance exercises build strength to make everyday activities easier, such as climbing stairs, shopping, and gardening. Start with Intro level and then progress to P1 when you can complete 3 sets of 15 repetitions of the exercise without rest and the targeted muscles are not fatigued.

  • Shoulders (lateral arm raises): Strengthens muscles and improves the range of motion in the shoulders and neck.
  • Biceps (arm curls): Strengthens the bicep muscle in the upper arm and also improves hand and grip strength.
  • Triceps (triceps extension): Strengthens muscles in the forearms, shoulders, chest, and lower back as well as the tricep muscles in the upper arms.
  • Quadriceps (leg extensions): Improves stability when on your feet; helps blood circulation in the legs
  • Hamstring (leg curls): Improves the stability of the feet and ankles when standing, walking, or climbing stairs; good for getting the blood circulating in the leg after sitting or standing for a while
  • Lower Leg (calf raises): Improves the stability of the feet and ankles when standing, walking, or climbing stairs; good for getting the blood circulating in the leg after sitting or standing for a while
  • Multiple JointsImproves overall range of motion, strength balance and posture
Flexibility
Gentle stretches improve the range of motion in joints and helps with mobility. These are a series of static position muscle stretches. They improve overall mobility and range of motion.

Balance
Poses held for a set time improve overall stability and movement. Improves movement, spatial awareness, and ability to recover from slipping or being bumped in crowds.

Intensity

On the Borg Scale, the target area when exercising is to be between numbers 3 and 5.

The Talk Test – Exercise to the point where you can still talk out loud but are breathing somewhat heavily.

Exercising will get easier. Keep your doctor up to date on your progress and let them know if you wish to progress to the next level. Do NOT advance without your doctor’s approval!

Click here to see the Borg Scale & Talk Test

One of four levels of intensity can be followed. Most people with cirrhosis should be able to complete the Program 1 level of exercises. For some people, you may be referred to a certified exercise specialist or physiotherapist who will create a personalized exercise program for you.

There are four levels for each exercise. Your “Exercise Prescription” will indicate which level to complete.

  • Program 1 (easiest):  No equipment, can be done while lying or reclining in bed or on a couch, suitable for most patients with cirrhosis
  • Program 2: Can done while seated, good for those who may have balance issues, with or without equipment
  • Program 3: Sitting or standing with resistance bands for added muscle strengthening
  • Program 4 (hardest): – Balanced posture using light hand-held weights
Equipment

Resistance Bands – Resistance bands provide extra resistance to strengthen muscles when exercising. Once an exercise can be completed without taking a rest between the repetitions and you feel minimal to moderate muscle fatigue, consider introducing a resistance band. Make sure to start with the stretchiest (easiest) band first. Sporting goods stores, online stores, and department stores usually offer these.

Hand-Held Weights or Dumbbells – Use when a wide range of motion is required of the exercise or when exercise resistance bands are no longer challenging. When an exercise can be completed without needing rest between the sets and not feeling muscle fatigue. Make sure to start with the lightest weights possible to prevent injury, usually 1 lb. Sporting goods stores, online stores, and department stores usually offer these.

Safety

Most people with cirrhosis can and should engage in regular exercise.  Your physician or nurse practitioner may want to review your health and do some tests before you begin exercising, or when you wish to progress to a new level.

When exercising, there are some basic principles to be aware of to ensure your safety:

  • Wear non-slip shoes
  • Drink water before, during & after exercise
  • Clear area that is free of clutter or furniture in which you can move about freely without tripping or knocking something over
  • Have balance supports like a chair or wall within easy reach
  • Place equipment nearby, ready for use when you need them but not so close to trip on

Tips To Remember

Below is a list of advice that patients have found most helpful for exercising. The list has been approved by physicians, physiotherapists, and certified exercise specialists with experience in cirrhosis patient care.

  • Practice a new exercise correctly in front of a mirror to make sure it is being done correctly. Doing an exercise with the incorrect posture or wrong muscles is not helpful.
  • Avoid lifting the shoulders when performing arm exercises, especially those targeting the upper body and arms. Between sets, inhale, and relax the shoulders downwards.
  • Smile!
  • Take rest breaks as needed. LISTEN to your body!
  • Perform each muscle strengthening exercise in a slow and controlled manner. Save the speed for the aerobic sessions!
  • Drink a meal supplement or eat a snack before or after an exercise session.

Click here for MORE exercise tips

References:

The information on this page was compiled by the Cirrhosis Care Alberta project team (physicians, nurse practitioners, registered nurses, registered dietitians, physiotherapists, pharmacists, and patient advisors).

This information is not intended to replace advice from your healthcare team. They know your medical situation best. Always follow your healthcare team’s advice.

Last reviewed March 15, 2021