Having cystic fibrosis (CF) does not have to mean that you will spend every second of your life in hospitals or treatment centers. You can actually come to live a fairly thriving life if you choose to make the right nutritional and fitness choices. With the aid of your CF treatment team, including your nutritionist and physical therapist, you can begin setting nutrition and exercise goals that will help you to live the best life that you possibly can.
When you have cystic fibrosis (CF), you need more calories than people who don’t have it because you require more energy to compensate for poor digestion, to fight lung infections, and just to breathe like a normally functioning person. In fact, a person with CF is estimated to need up to 2 times the amount of energy of a person without CF. The generally recommended diet for a person with CF is high in calories and high in fat with approximately 40 percent of the total calories from fat. While there is no rule of thumb to determine the exact amount of energy needed by a person with CF, the goal of any nutritionist or medical team is to sustain or gain healthy weight in adults and to gain adequate weight and growth in children and adolescents.
Body Mass Index
The exact amount that any person (including people without CF) should weigh will depend largely on your current weight, your height, and the nutritional goals set forth by you and your treatment team. Different measurements will be used for people of different ages and are relative to height:
- Children under the age of 2 are evaluated on a weight-for-length criterion;
- Children who are between the ages of 2 and 20 will be evaluated based on their body mass index (or BMI) due to high fluctuations in height;
- Individuals over the age of 20 will be evaluated based on a numerical BMI.
The BMI is determined by taking your body weight in kilograms (kg) and dividing that amount by your height in meters squared (m2). The Centers for Disease Control and Prevention (CDC) has a very good online BMI calculator that individuals can use to check their own BMI. You will find the link at the end of this article in the “references” section.
The exact amount of calories that people with CF need will vary, but it is usually about twice as many as other individuals of similar age, weight, and height who do not have CF. The amount needed to gain weight is generally about 500 extra calories per day.
Weight goals should be set with your CF dietitian or treatment team to determine the best plan to reach your ideal BMI. Your dietitian will be your best source of information for how to add calories to your current diet, but the following list of meals and ingredients may be a good guideline for you to add an additional 500 calories to your regular diet:
- Add an avocado to a grilled ham and cheese sandwich;
- Add extra cheese and olive oil to a bowl of spaghetti noodles and sauce;
- Drink a glass of whole milk with a peanut butter and jelly sandwich on white bread;
- Eat at least 1 cup of nuts or trail mix;
- Eat an extra large bean and cheese burrito with salsa;
- Eat a grilled chicken wrap (such as a Caesar wrap);
- Add a protein bar or eat two slices of cinnamon raisin toast with butter and a nutritional supplement drink (such as Boost or Ensure) to your breakfast.
If you still aren’t reaching your general goal of an additional 500 calories, you might want to add a few of the following snacks in between or with meals, each of which are about 100 calories:
- 2 slices of bacon;
- 4 tablespoons of avocado;
- ¼ cup of shredded cheddar cheese;
- At least 2 tablespoons of chopped nuts;
- 1 tablespoon of peanut butter or sunflower seed butter.
All of the previous items in both the 500 and the 100 calorie lists are intended to be quick and easy snacks that you can grab on the go and that won’t break the bank. As with all medical advice found on this site and others, always double check with your physician before trying anything that you read or hear, even when it comes from others who also have CF.
When you have CF, you know that you need to be vigilant and committed to improving all areas of your life, not just your nutrition. Research has shown that when people with CF participate in regular exercise and other physical activity that they will benefit in multiple ways, including strengthened bones, diabetes management, improved mood, and decreased chances for heart disease.
Exercise programs may be hard to stick with however, and the habit may take a while to form. One of the most important ways to improve your chances of sticking with your exercise program is to start at the right level for your own personal fitness level and mental state of readiness.
The Fitness Plan
Where to start your fitness plan depends largely on your personal goals, your medical goals, your interest, and your abilities. Consult closely with your CF care team so that you can all work together to come up with the best plan for you and your own lifestyle.
The three primary keys to developing the right fitness plan for you include the following:
- Talk with your CF health care provider or team to develop a plan that is safe for you and to set goals;
- Find fitness groups, classes, or a buddy or two to exercise with and to hold you accountable;
- Only choose activities that actually sound fun to you (i.e., if a gym sounds boring to you, plan to be outside walking or riding your bike).
Here’s that old adage once again: talk to your doc before following any medical advice. All people should be careful when taking medical advice, but when you have a serious medical condition like CF, it is even more important for you to seek professional counsel first. Your CF care team may want to run some basic exercise tests first to help determine your lung, heart, and muscle strength, which will not only make sure you are starting out safe, but also help you to set reasonable goals for why you are exercising in the first place.
The basic tests that your physical therapist or physician will probably want to run will include both cardiovascular fitness (aerobic) and muscular fitness (muscle strength). These tests will usually involve walking particular distances (either on stationary equipment or on a track), as well as basic calisthenics (or rhythmic exercises). These tests may be conducted in a special laboratory and with special equipment and are done to find out the following:
- Your baseline exercise ability;
- Your goal for your exercise ability;
- The right intensity level for your exercise routines and fitness goals;
- How much progress you have been making since you started your exercise program.
The Centers for Disease Control and Prevention
The Cystic Fibrosis Foundation