Teens
A place where teens can come to learn and discover about CF.
Teen News
Why is infection control important?
Certain organisms are harder for your doctor to treat
To protect yourself in clinic:
Wear your mask in the waiting room, lab & X-ray
AND....
- Don’t forget to wash your hands
- Dry your hands using a clean towel or air dry them
- What is the right way to wash your hands?
- Wet your hands with clean, running water (warm or cold) and apply soap.
- Rub your hands together to make a lather and scrub them well; be sure to scrub the backs of your hands, between your fingers, and under your nails.
- Continue rubbing your hands for at least 20 seconds. Need a timer? Hum the "Happy Birthday" song from beginning to end twice.
- Rinse your hands well under running water.
How do infections spread?
- Patient to patient transmission is one way that patients develop infection
- The environment can harbor infectious organisms
- Family and friends who are sick can transmit infection
Facts:
- Cystic Fibrosis makes your lungs prone to chronic infection
- There are many organisms that affect people with CF
- Some of the organisms are resistant to certain antibiotics
Q: Why is it important to participate in cystic fibrosis (CF) research?
A: Research participation is important for everyone, especially teens, because it can help to further our understanding of CF, which may lead to a cure. By participating in research, it could lead to findings that help to increase the life span for people with CF. Without willing participants, new drugs and devices will not be discovered for the treatment of CF.
Q: Why should teens participate in CF research?
A: It can be a rewarding experience to participate in research and there is such an opportunity to benefit from getting involved. It might make you feel good to learn your actions could help people all over the world with CF.
Q: Are there any other benefits to participating?
A: When you participate in clinical trials you work with research coordinators, are monitored closely and you can become involved in your own care. You may also find participating in clinical trials helps you to gain a greater and deeper understanding about CF.
Sleep in CF teens
Poor sleep is a known problem in any teen. The most common sleep problem in teens is insufficient sleep – i.e. not enough sleep. Teens on average need 8.5 – 9.5 hours of sleep per night. So for example if you actually fall asleep at 11PM, you need to sleep uninterrupted until 8AM to get enough sleep. Teens who do not get enough sleep on a regular basis usually suffer from fatigue, irritability, poor mood, difficulties concentrating, problems in school, and problems in relationships with friends and family.
Insufficient sleep is even more of a problem in teens with CF. Teens with CF have less time to sleep as much of their day is taken up by therapies and medications. In addition, even when asleep, teens with CF may be more likely to have interrupted sleep because of cough, nasal congestion, stomach problems, and other symptoms as a result of their CF.
Sleep is an essential component of daily living and overall health. It is important for both physical and psychological well-being to have good sleep. If poor sleep is an issue in your life, please speak to your caregiver, parent, and CF medical team to discuss ways to improve it.
Teens with Cystic Fibrosis-Pulmonary
Function and Airway Clearance
Growing up with CF has many challenges; taking care of your CF may be one of the hardest parts about being a teenager. Because you grow so much during puberty you can and should expect your lungs to grow too. While you are using energy to grow and increase your lung volumes, your body also needs a lot of energy and help from you to fight CF.
Spirometry
Spirometry is performed at each (quarterly) CF visit. The spirometer records the amount of air that you breathe in and blow out and how quickly you are able to expel the air from your lungs. Normal values are based on your age, height, ethnicity and sex. Normal results are expressed as a percentage. A value is usually considered abnormal if it is less than 80% of the predicted value.
The forced expiratory volume (FEV1) is a measurement of the amount of air you are able to force out in the first second of exhalation. The FEV1 is recognized as a predictor of progression of lung disease. A value of 10% below your personal baseline often indicates an infection or decline of your CF, and the need for changes or treatment. It is expected that a person with CF will experience a drop of 1-2% of their FEV1 each year due to the effects of lung damage.
Pulmonary Function Test
Once a year as part of your “annuals”, a more comprehensive measurement called full pulmonary function testing (full PFT’s) is recommended by the Cystic Fibrosis Foundation. PFT’s are a group of tests that measure how well your lungs take in and release air before and after a bronchodilator (such as Albuterol) and how well they move gasses like oxygen from the air into the body’s circulation. This test is done in the Diagnostic Study area of the Children’s Hospital.
Airway Clearance
Lots of thick mucus is produced in the lungs of people with cystic fibrosis. This leads to frequent infection (with bacteria and virus’), inflammation (swelling), and tissue damage. It is important to clear this mucus using medications and various airway clearance techniques and devices. Treatments which help with the thinning and removal of mucous are very important to help preserve (save) your lung function and reduce the permanent damage to the lungs caused by CF
There are many different types of airway clearance methods. Conventional chest physiotherapy (CPT) usually requires the assistance of another person. Self administered airway clearance techniques include: high frequency chest compression (HFCC, The Vest), Intrapulmonary percussive ventilation (IPV), the active cycle of breathing technique (ACBT), autogenic drainage (AD), positive expiratory pressure (PEP), Flutter and Acapella. Please plan to perform aerosol and clearance therapy two times a day unless you are told differently by your CF doctor. Please contact your CF center respiratory therapist to find a method that works well for you.
Teens with Cystic Fibrosis - Nutrition
Teenage years can be both fun and challenging for anyone, but this is especially so for teens with CF. During the teen years many changes take place.This is the time when puberty happens and growth really takes off. There appears to be a connection between higher body weights and lung function. Maintaining a healthy body weight is important in order to grow and maintain good lung function. This is true even after growth has stopped. Teens with CF can do almost anything their peers can do. So remember to focus on nutrition in order to stay healthy and active!
Important Nutrients for Teens
Calories
Most teens need about 2000 to 2500 calories. Teens with CF may need as many as 3000 to 5000 calories per day in order to grow well and stay healthy. Increasing fat in the diet is a good way to get more calories. You can add healthy fats like oil to pasta, avocado, nuts and salmon to salads, and nut butters to bread.
Iron
Teens need more iron during puberty and for muscle building during growth and development. Foods high in iron include meat, fish, seafood, fortified breakfast cereals, green leafy vegetables, beans, and raisins.
Calcium
Calcium is important for teenagers to help build strong bones.People with CF in general are at risk for bone disease. Maximize your bone building capacity by including three servings from the dairy group each day.Foods high in calcium include milk, yogurt, and cheese.In addition, it is common for people with CF to malabsorb fat soluble vitamins, such as Vitamin D, that helps aid in the absorption of calcium. So remember to take your CF vitamins!
Zinc
Zinc is an important nutrient for the immune system, wound healing , and growth. Zinc is found in meats, fish, seafood, beans, seeds, nuts and fortified breakfast cereals.
How can I get the nutrition I need when I have a busy lifestyle?
Teens are busy people. In addition, teens with CF need to have time to do all of their respiratory treatments and still have time to lead an active lifestyle.Getting enough calories during the day can be a challenge, but it can be done with some planning.
Breakfast on the go can be a breakfast sandwich made with extra cheese, smoothies, muffins, full-fat yogurt with granola, or a bagel with cream cheese
Stock your backpack or locker at school with high calorie options like sports bars, trail mix, pre-prepared supplements (Ensure plus©, Boost plus©), peanut butter or cheese crackers.
Make your afternoon snack count: Try sandwiches with extra cheese, avocado, and bacon. Make super milk with whole milk and half and half and drink with some oatmeal, raisin, and walnut cookies. Make a mini pizza with an english muffin and double the cheese.
Dont forget the dessert. Having a bedtime snack or dessert can provide the extra calories you need. Make a sundae with high calorie ice cream, nuts, fruit, and other toppings.Have a bowl of cereal or granola with half and half. Make a homemade milkshake or smoothie with your favorite ingredients.
CF Related Diabetes
Some adults and teens with CF have cystic fibrosis related diabetes. This type of diabetes is different than the types of diabetes that occur in people without CF. In CF, the pancreas may be clogged with mucus.When this happens insulin is not secreted into the blood very efficiently.As a result, blood glucose may increase.This type of diabetes occurs often in individuals with CF, especially as they get older. For this reason, all people over the age of 6 are screened yearly with an oral glucose tolerance test. If blood sugars remain high, people with CF are referred to a diabetes specialist that will determine the best way to treat them.
Teens with CF can lead active healthy lives.Paying attention to nutrition and eating a high calorie diet, taking prescribed vitamins and enzymes, and monitoring for diabetes can help teens stay healthy and reach their goals!
Teens and Adherence to Medications/Treatments
“I’m going to the mall with my friends, see you later.” “What about your treatment?” “I’ll do it later.” “No, you have to do it before you go.” “But everyone’s meeting now! I don’t want to be late!”
“Take your med’s!”
“Not now…I’ll do it later”
“No, you need to do it now.”
Does any of this sound familiar? If so, you are not alone. And here’s the good news: you live in a perfectly normal household.
The teen years are a challenge for you the teen, as well as for your parents. This would be true even if you didn’t have CF. You are starting to assert yourself and test your independence, and this may be seen as rebellion by many parents. As a teen, you may want to take more control over your treatments, and want them to be a lower priority than your other activities – parties, sports, schoolwork or time with your friends. This is totally normal to you the teen, but may be completely frustrating to your parents.
So, how do you find a common ground so that both you and your parents get what you want?
First of all, having CF stinks. We all know that, and wish no one had it, but unfortunately that cannot change. And with CF comes all sorts of things that need to be done in the day. Treatments, medications, a high calorie diet and exercise are just a few of the things your doctor wants you to adhere to.
Teens often feel awkward and insecure, and may lose confidence in their abilities and skills. You probably feel frustrated because of all the drugs you need to take and the time you spend having to do the treatments. You may even want to pretend you are healthy when you are out with your friends. Because of this, you may not eat healthy foods, not take your enzymes, and some of you may even start smoking. Rebellion is a perfectly normal part of going through puberty. Unfortunately, teenagers with CF whose behaviors are rebellious can potentially lead to serious problems with their health.
Talk with your parents about when it is possible to be flexible on treatment times. If you try to figure out strategies together, then they may have an easier time respecting your increasing independence. But for this to succeed, you need to be responsible too. Your parents can be a tremendous help to you by allowing you the freedom to make decisions. Even if you fall down and get hurt, you can learn from your mistakes. However, parents do have the right to - and should - step in if you are neglecting your health to a point where it worsens.
All of the things you need to do every day to stay healthy may not seem like a huge list to your doctor, but to you it may feel like having to climb Half Dome in Yosemite. All of the things that we, your CF Care team, ask you to do are things that will help you live and maintain a healthy life with a chronic lung disease (CF).
CF and Reproductive Issues
Siri Vaeth, M.S.W.
Reproductive health may be hard to talk about, but it is important that you get answers to your questions, safe from embarrassment. Ideally, your care team will ask you questions and provide information to draw you out. If not, it is important that you choose the person on your care team that you feel most comfortable with, and that you have time to share concerns or ask questions in private.
For teens with CF, puberty is often delayed. This may be due to nutritional challenges, as lower body weight is directly linked to delayed puberty. Boys with CF may find that their friends are growing taller and developing pubic and facial hair before them. It is very common for girls with CF to have their first period later than their peers without CF. Often, girls’ menstrual cycles are irregular.
Many teens with CF have questions about fertility. It is estimated that over 95% of men with CF have CBAVD (Congenital Bilateral Absence of the Vas Deferens). While sperm is produced, the vas deferens tubes are blocked or absent, and no sperm is ejaculated with the semen. If you are a young man with CF you should not assume that you are infertile (meaning that males are unable to father a child without medical assistance; sterile means: inability to produce children). Until you are tested, you won’t know if you are part of the small percentage of men that have normal vas deferens. If you are part of the majority who have CBAVD, you should know that advances in medical technology have made it possible for men with CF to father biological children.
Young women with CF may have thicker cervical mucus that can inhibit pregnancy, but this should not be assumed. For sexually active teens with CF, birth control should be discussed with your doctor. For both young men and women, protection must be used to prevent sexually transmitted diseases (STDs). For female teens, CF can impact birth control options. For example, certain antibiotics may interfere with the effectiveness of oral contraceptives. It is important that your doctor knows if you are using birth control to ensure there is no negative interaction with your CF medications. As part of the transition process, your care team should give you an opportunity to speak privately, without your parent present.
Beyond reproductive questions, there are other issues that impact teens with CF but which may feel embarrassing to talk about. Many teenage girls with CF suffer with uncomfortable vaginal yeast infections caused by the antibiotics they are taking. This is very common and easily treatable. If you are experiencing this, let your doctor know. Additionally, many teens with CF - primarily girls - experience stress incontinence (put more plainly – wetting one’s pants) due to increased pressure on the bladder from chronic coughing. Many girls use pantyliners when they have an increased cough. There are also exercises that can help reduce these symptoms. If you ask your nurse or doctor (or whoever you feel most comfortable with), they can talk about these with you.
As teenagers, you are transitioning to take more control of your care. Finding a member of your care team to talk about the issues discussed above is key to your personal health.
Teens, Cystic Fibrosis and Emotional Health
Siri Vaeth, MSW and Lindsey Martins, MSW
The teen years can be tough – whether or not you have cystic fibrosis. Physical, intellectual and emotional changes are happening simultaneously. Your peer group is probably more important than ever, and it is normal to want to fit in, and not stand out as “different.” Having CF, with all its challenges and time-consuming treatments can be a huge burden. If you go through periods of depression, you are not alone. Teens with CF report being depressed for many reasons that you may be familiar with: feeling physically unwell, being frustrated by the challenges of endless daily treatments, experiencing negative side effects from medications, missing major life events (sports, parties, concerts, proms) due to hospitalizations, and feeling different from their peers.
Teens with CF are more prone to anxiety and depression, and a lack of sleep can worsen the situation. Few teenagers achieve the recommended nine hours of sleep each night, and because of the CF, your sleep may be regularly disrupted because of your medications and cough. In addition to putting you at greater risk of infection, the lack of sleep can lead to dramatic mood swings.
Adolescence is a time of experimentation, and this may include many things: new hair colors, body piercings, styles of dress, drug and alcohol use, and sexual activity. Just because you have CF doesn’t mean that you are immune to the pressures of the above experimentation. Unfortunately, the physical and emotional impact of this experimentation can sometimes be much harder for teens with CF.
Sometimes peer pressure is not the issue. Teens with CF have said they use alcohol or drugs to self medicate due to depression and anxiety, and to seek a temporary relief from the challenges of the disease. Depression also contributes to self-harm, namely “cutting,” as well as eating disorders. We know that the higher the level of depression and anxiety, the less likely it is that you’ll adhere to your treatments. It is very common for a negative spiral to begin.
Your parents CF care team and outside support system can help you to find support and develop coping mechanisms. These can include therapy, sports, artistic expression, spirituality and participation in CF-related or other social support networks. The social worker at your center wants you to feel comfortable talking with her. The most important thing is that you reach out to someone, so that you feel less alone and can get the support and resources you need.
Making the “Most-is” of Cystic Fibrosis at UCSB
By Lucy Barnes
I remember my first day at the University of California Santa Barbara (UCSB). It marked the beginning of living and managing cystic fibrosis on my own, among many other things. The weather was sunny and bright, mirroring the dispositions of all the new students. I was among the incoming freshmen beginning to get acquainted with our new campus, and curious where the next four years would lead me. The bike path overflowed with seasoned riders zipping by and I made a pact with myself that by the end of this journey, I would ride with these bicycle warriors. Until then, I was content walking to class with the other wide-eyed freshmen. Looking around at my fellow classmates, I realized I was not alone in this monumental transition from high school to college. Instead, I felt a great comfort and solidarity with these strangers because we were all connected by one thing: the unknown. At that moment I knew everything was going to be okay.
I also knew that things were going to be okay health-wise, as my parents and I had met previously with the head of the disability services program, who told me about the ways UCSB would support my health needs. We had also previously met with the manager of student housing to request a single dorm room, as well as the director of the student health center, who became my primary doctor.
That first year of learning to balance caring for myself and having a full academic and social life defined the next five to come. To say I made a great group of friends is an understatement; I made a second family. It took a few months to find my core group, but after that we were inseparable. With these friends, I felt comfortable sharing the intimate details of my daily health routine, and CF in general. They each were so supportive and non-judgmental, and offered their help in many ways. They were sensitive about cleanliness, stayed away when they were sick, got flu shots, and at gatherings, protected me from second-hand smoke. And by the way, it helped having a boyfriend who was willing to sterilize my equipment! It was because of their support, that I realized CF was not something to hide or be embarrassed about, but instead just an extra part of my daily routine and ironically, theirs as well. My days consisted of classes, exercise, hanging out with friends and my various health needs.
I anticipated needing additional time to dedicate to my health regimen and my CF doctor recommended I only take 12 units per quarter (three classes), as she explained that my daily CF care should be thought of as “just another class.” I scheduled my classes around my two treatments and daily exercise so as not to over exhaust myself. In addition, I developed a close relationship with an amazing primary doctor at the student health center who was familiar with CF. She was always available to answer questions, do routine tests such as spirometry, throat cultures and bloodwork, prescribe various medications, as well as consult with my CF doctors at home. She was even willing to make house calls if needed. She also acted as an ally when I was sick by writing letters to my professors explaining my absences so I could have extra time to make up missed work. My doctor and my friends formed a circle of support and I feel lucky to have created these ties because they made my college experience significantly easier.
Five years have passed since I first started UCSB, and in two months I will be graduating and receiving my degree in Psychology. I have confronted the bike path and am now a proud bicycle crusader. I continue to have a family of friends whom I see regularly. And I am looking into graduate school for the future. It is surreal that college is coming to an end, yet I’m excited about what lies ahead. I now know that navigating the unknown is possible with supportive friends and family, and caring doctors. I also learned that I have the ability to direct my future, and that with an optimistic disposition, anything is possible. I do not regret a single moment or decision I made, and I am so proud of my dear friends and myself for accomplishing this chapter of our lives.
"First printed in CFRInews, Summer, 2012
Step by Step: Tips for Transition to College and Beyond
By Bridget Barnes
Going away to college is a big transition for many people. Going away to college when one has cystic fibrosis (CF) can complicate this transition, as the student must negotiate the delicate balance of becoming an independent adult, while still depending on various people, places and things to maintain his or her health. As the mother of a college student who is about to graduate, and who lives five hours away from home, here are some practical tips my daughter and I learned which made the transition to college easier.
After sending in the intention to register, or acceptance letter, for college:
Meet with the campus disability office to register and inquire about accommodations and/or services they offer (i.e. providing note takers and advocating to professors when classes are missed due to illness, etc.).
- Contact student housing to request a single dorm room. Ask about the frequency of housekeeping services and request increased attention if necessary, including vacuums with HEPA filters, as well as extra care of shared bathrooms.
- Sign up at the campus recreation center to use the exercise facilities (personal trainers are also available).
- Meet with the director of the student health center to find a primary care doctor, preferably one who knows about CF, and then schedule an initial meeting to make introductions.
- Meet the campus pharmacist, as there may be times when a medication must be ordered on short notice and the campus pharmacy is the most convenient location.
- If using a mail-order pharmacy, coordinate orders regarding the time of delivery and mailing address where medications are to be shipped, especially chilled medications that are sent overnight.
- Check on the college’s health insurance program and see how it interfaces with any existing coverage.
- At 18, the Health Insurance Portability and Accountability Act (HIPAA) affects parents’ ability to have access to their child’s medical records and participate in his or her medical decisions. Consider having your son or daughter sign release forms for each health care provider, pharmacy, and insurance carrier, etc. in advance. See: http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/index.html
- Ask your CF doctor from home to send standing orders for routine procedures such as sputum cultures, spirometry, blood work, etc. to the primary doctor at school in case a change in health requires an immediate diagnosis.
- Get a recommendation from specialty doctors at home (i.e. endocrinologist, gastroenterologist, etc.) for an equivalent care provider near the college campus.
- CF-related diabetes requires special attention: alert the dorm’s resident assistant and possibly a neighboring student, and provide them with necessary information in case of an emergency.
- Create a binder to take to college with copies of the following: 1) a complete list of medications including their dose and frequency; 2) insurance contact information and copies of health insurance cards; 3) names and contact information of all CF and CF-related doctors and nurse practitioners (this contact list makes it a lot easier for local doctors to fax or email test results).
- Space is tight in a dorm room, so consider assembling a “med cart” with drawers and trays for the storage of medications, nebulizers, and the sterilization equipment (try the “ELFA” storage system). A lamp on top and it doubles as a nightstand!
- Make sure the sterilization process for nebulizers, etc. will work easily in a dorm setting.
- Get a small refrigerator for medications that need to stay cold.
- Stock an ample supply of paper towels, hand sanitizer, “Clorox” wipes, Kleenex, etc.
When scheduling classes:
- Consider a reduced course load, as our doctor recommended. A person with CF needs to devote one or two “extra class periods” per day to respiratory treatments, cleaning equipment, exercise, etc. This way treatment times are built into the course load and will not run the risk of being sacrificed due to academic and social pressures.
- Schedule classes around treatment times, if possible.
Going to college is an important step towards becoming independent. Creating a supportive environment is crucial for every student, and developing relationships with key people on campus ahead of time helps to ensure a positive experience. For those with CF, a few extra steps to ease the transition to college can set up a successful model that lasts far beyond graduation.
"First printed in CFRInews, Summer, 2012