Living with Cystic Fibrosis (CF) presents many challenges, but with proper management, you can enjoy a fulfilling life. You have the power to take charge of your health by managing Cystic Fibrosis on a day to day basis.
How to Manage Cystic Fibrosis
With the many breakthroughs in the study of cystic fibrosis, professionals continue to develop many helpful treatments and medications for people with CF. But you have the power to take charge of your CF by managing it on a day to day basis.
1. Airway Clearance Techniques
Airway clearance techniques are ways that you can clear your lungs. These techniques benefit you when you use them several times each day. Chest physical therapy (part of airway clearance) usually involves having someone to help you with the process. By cupping their hand and clapping you on the back or chest, they can help loosen the thick mucus in the lungs. Make sure the person helping you has been educated on the process because clapping certain areas on the body could harm rather than help you. If you have a child with CF, this process is easy enough for you to perform on them in the comfort of your home.
People with Cystic Fibrosis may use another airway clearance technique called high-frequency chest wall oscillation or simply “the vest.” A vest fits over your chest and attaches to a machine. This machine causes the vest to vibrate rapidly which helps loosen mucus. After a period of time, you should cough to expel any loosened phlegm, and then resume the treatment. The process takes up to thirty minutes and repeats several times each day.
2. Medications for Managing Cystic Fibrosis
Your doctor will evaluate your condition and prescribe medicines that he/she thinks best for you. Common medications for CF sufferers include:
- Nebulizers to improve lung function
- Mucus-thinning medication to loosen mucus in your lungs
- Antibiotics to help prevent lung infections
- Medications for digestion to help the pancreas function correctly
- Stool softeners to treat constipation
- Pancreatic enzymes to aid digestion
- Anit-inflammatory medicine to reduce any inflammation in your lung area
3. Lung Transplant
For some adults with CF, they might consider a lung transplant. This procedure involves a process with complicated steps. This means that you should discuss the possibility of a lung transplant with your Cystic Fibrosis doctor well in advance actually needing one. If you decide to pursue this step, you will need to wait for a donor from whom you will receive your new lungs. During this waiting period, you should maintain a healthy lifestyle. This helps in the long process of recovery and adapting to your new lungs. After the transplant takes place, you will have to stay in the hospital for quite some time to recover from this serious surgery.
4. Diet and Lifestyle
Diet and exercise are so important for people with cystic fibrosis. Monitoring what you eat and how much physical exercise you get will help you live a longer life.
Cystic Fibrosis causes the body to have difficulty absorbing needed nutrition through the small intestine. This results in malnutrition. Because of this, it is important to follow high-calorie diets so you get enough nutrients and fats you need. A diet high in sodium helps replenish salt easily lost through the skin. Fiber also helps regulate digestion and aids in easier bowel movements.
Establishing a daily exercise routine for this helps loosen the thick mucus in the lungs caused by CF. This aids in keeping a healthy heart which leads to a healthier you. Taking walks, hikes, and biking all count as a great way to stay active.
Ask your doctor about getting a portable spirometer, like Aluna, to help monitor your lung health at home. Not only can the Aluna device signal poor lung performance, but it can help you minimize your trips to the doctor’s office. With the current COVID situation, it’s important to limit possible exposure to the virus, especially for those with Cystic Fibrosis.
5. Clinical Trials
A clinical trial is a study of a new treatment or test. The purpose is for experts to administer these new treatments to find out how they can better help those with a particular disease. There is much we don’t know about cystic fibrosis so clinical trials are a great way to learn more about CF treatment options. According to the Cystic Fibrosis Foundation website, medical professionals constantly develop new treatments and therapies. By participating in a clinical trial, experts in CF will guide you through the process and you will help the future of others with cystic fibrosis.
6. Staying Clean
Avoiding sickness is important if you have cystic fibrosis. Germs thrive in the mucus that accumulates in your lungs. Wash your hands often, especially after having contact with people and public areas. When you’re out and about, try to maintain a six-foot distance since germs have difficulty traveling this far. Make sure you properly care and clean your inhalers and nebulizers. Pesky germs hang out on these surfaces, and you can easily breathe them in while doing a breathing treatment. Stay up to date on all your vaccines since this reduces your chances of getting sick.
Mental Health & Cystic Fibrosis
Staying healthy mentally is just as important as your physical health. While you are managing Cystic Fibrosis, you may experience high and low points. Staying positive through it all can have a huge impact on your overall health. Anxiety and stress sometimes cause panic attacks, which greatly affect your ability to breathe. Combined with CF, this could make for a serious situation.
Take care of yourself by thinking positively and participating in calming activities such as meditation and spending time in nature. This helps relieve you of stress, improving your wellbeing.
Remember, you are not alone in this. With 30,000 other people suffering, there are many support groups for people with CF that can connect you to people who have similar experiences to you. Each person’s experience is different, but everyone can be helped.