At the National Aspergillosis centre we are always listening to the life experiences of our patients, both during our online ‘live’ chats with groups of patients and in our support groups on Facebook. We talk about many subjects and try to share any useful Hints & Tips with our wider patient groups. Here are some ways we have heard of to help you live with a chronic illness:
- Accept help: Ask for help with daily tasks like shopping, getting to appointments, or household chores. You can also ask your provider or social worker about services like meals delivered or home health aide.
- Build a support network: Find emotional support from friends and family, or join a support group where you can find people with experience of CPA.
- Set goals: Set short-term goals to help you feel more in control.
- Make changes: Focus on changing what you can, such as eating healthy, exercising, or avoiding certain foods (see other parts of these guidelines).
- Pace yourself: Stop activities before you get tired so your symptoms don’t flare up.
- Find a sense of purpose: Reconnect with your values, community, or extended family.
- Find a community: Join a community for people living with chronic conditions.
- Consider your family: Illness can be stressful for the whole family, so keep communication open with your partner and children.
- Explore stress-relief activities: Try meditation, a hobby or other activities to help you de-stress.
- Avoid negative coping mechanisms: Don’t use alcohol or substances to cope.
You can also consider reading books about living with chronic illness, such as Life Disrupted by Laurie Edwards, or checking out blogs about the topic.
Detailed advice
Living with Chronic Pulmonary Aspergillosis (CPA)
Living with CPA can be challenging, but there are strategies to help manage the condition and maintain a better quality of life. Here’s some advice tailored for individuals with CPA:
- Understand and Manage Your Condition
- Educate Yourself: Learn about CPA, its symptoms, and treatments to feel empowered in managing your health.
- Adhere to Treatment: Take antifungal medications as prescribed and attend all follow-up appointments.
- Recognize Symptoms: Monitor for signs like worsening cough, hemoptysis (coughing blood), or fatigue, and report them promptly.
- Optimize Lung Health
- Avoid Irritants: Stay away from dust, mold, smoke, and pollution. Use air purifiers and wear masks when necessary.
- Quit Smoking: If you smoke, seek support to quit, as it can worsen lung damage.
- Breathing Exercises: Practice techniques like diaphragmatic or pursed-lip breathing to ease breathlessness.
- Use Oxygen Therapy (if prescribed): Supplemental oxygen can help manage symptoms and improve daily activities.
- Improve Physical Health
- Stay Active: Engage in light physical activities like walking or stretching to maintain strength and stamina. Consider pulmonary rehabilitation programs.
- Hydrate: Drink plenty of water to thin mucus and help clear your airways.
- Eat Nutrient-Rich Foods: Focus on a diet rich in protein, healthy fats, and whole grains to maintain energy levels and combat weight loss.
- Manage Mental and Emotional Well-Being
- Seek Emotional Support: Join support groups or connect with others living with CPA to share experiences and coping strategies.
- Practice Relaxation: Try mindfulness, meditation, or yoga to manage anxiety and stress related to the condition.
- Consider Therapy: Talk to a counselor or therapist to process feelings of frustration or fear.
- Prevent Infections and Complications
- Vaccinations: Stay up-to-date with flu and pneumonia vaccines to reduce the risk of respiratory infections.
- Good Hygiene: Wash hands frequently and avoid close contact with sick individuals.
- Monitor for Complications: Be vigilant for signs of hemoptysis, secondary infections, or worsening symptoms.
- Adapt Your Living Environment
- Control Humidity: Use a dehumidifier to prevent mold growth, as mold exposure can exacerbate CPA.
- Maintain Clean Air: Keep your home well-ventilated and consider using HEPA filters.
- Reduce Exposure to Allergens: Avoid gardening or handling compost without protective gear.
- Communicate With Your Healthcare Team
- Ask Questions: Be proactive about understanding your treatment plan and any side effects of medications.
- Report Changes: Let your doctor know about new or worsening symptoms.
- Plan Ahead: Work with your care team to create an action plan for flare-ups or emergencies.
- Use Medications Effectively
- Follow Prescriptions: Take antifungal treatments like itraconazole or voriconazole as directed.
- Manage Side Effects: Discuss any side effects with your doctor, and ask about alternatives if needed.
- Consider Adjunctive Medications: Bronchodilators, mucolytics, or corticosteroids may help manage specific symptoms.
- Monitor Your Progress
- Track Symptoms: Keep a diary of symptoms, energy levels, and triggers to share with your healthcare provider.
- Get Regular Tests: Ensure routine follow-ups, including chest imaging and blood tests, to monitor disease progression and treatment efficacy.
- Stay Positive and Patient
- Focus on What You Can Control: Small lifestyle changes and effective management can make a significant difference.
- Celebrate Small Wins: Acknowledge progress, such as fewer symptoms or increased activity levels.
- Be Kind to Yourself: Rest when needed, and don’t feel guilty about prioritizing your health.
By combining medical management, lifestyle adjustments, and emotional support, it’s possible to live a fulfilling life despite CPA. Regular communication with healthcare providers and a strong support system are key to navigating the challenges of this chronic condition.
Useful resources
Living well with a long-term physical health condition (NHS)
Living with Long Term Conditions (NHS)
Coping with a long-term condition: the care plan | NHS