Swimming for people with aspergillosis
How could you advise someone with aspergillosis who wants to swim but finds the local pool triggers their asthma?
Great question — and can be really important for quality of life. For someone with aspergillosis (especially ABPA or CPA) and asthma that worsens in chlorinated pools, here’s a tailored guide that balances safety with enjoyment:
🏊♀️ Swimming with Aspergillosis + Chlorine Sensitivity: A Practical Guide
💡 1. Choose the Right Pool Environment
Goal: Minimise chloramine exposure (which irritates airways).
✅ Best options:
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Ozone- or UV-treated pools: These significantly reduce chloramine levels.
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Saltwater pools: Gentler, although still chlorinated (just less harsh).
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Natural pools or lidos: Often free from chlorine, especially in outdoor settings.
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Seawater swimming: The ultimate in chlorine-free options if you're near the coast and it's safe.
🚫 Avoid:
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Indoor pools with poor ventilation
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Pools that "smell strongly of chlorine" — this usually means high chloramines
🕗 2. Swim at Low-Traffic Times
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Early morning swims are ideal — before other swimmers add organic matter (sweat, sunscreen, etc.), which reacts with chlorine to form irritants.
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Ask the pool when they clean/shock it — swimming after that is usually better.
🧤 3. Protect Your Airways
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Use a nose clip to avoid inhaling water vapor directly through the nasal passages.
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Consider wearing a light face mask (e.g., FFP2) on the poolside until just before entering, to avoid breathing chloramines in enclosed spaces.
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Ventolin (salbutamol) or another rescue inhaler should always be close by — even poolside if staff are aware.
💊 4. Pre-medicate if Needed
With your doctor’s advice, consider:
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Short-acting bronchodilator 15–30 mins before swimming (e.g., salbutamol)
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Leukotriene receptor antagonists (like montelukast) for added airway protection
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Nasal rinses or corticosteroid sprays post-swim if you’re prone to sinus issues
🚿 5. Shower Immediately After
To reduce any skin or airway irritation:
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Warm shower straight after
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Nasal rinse or saline spray
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Clean/dry clothes quickly to avoid damp mold exposure
🏞️ 6. Explore Alternative Swimming Options
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Outdoor pools or lidos
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Swimming lakes or sea-based pools (like Bude Sea Pool)
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Private or spa pools with alternative sanitisation systems
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Aquatherapy centres: Often use lower chemical levels and may cater to sensitive lungs
💬 7. Talk to Pool Staff
Many pools are willing to help. Try:
“I have a medical lung condition that reacts to chloramines — can you tell me when chlorination is lowest or if you use UV systems?”
You might be surprised how supportive they are.
Thinking about joining a clinical trial? What are your concerns?
Running clinical trials are how doctors and researchers improve your treatment and care, and how new forms of diagnosis for aspergillosis are advanced. It is particularly difficult to get volunteers when the number of people affected by a disease is small – and aspergillosis is one of those diseases. If we can’t get enough people in trials then the value of that work is weakened and there can be less chance that a new treatment will be made available, or a new way to diagnose those at risk from aspergillosis might be delayed.
That said, there are many perfectly good reasons why someone may not volunteer, and it is a very personal decision. If trials are not for you for any reason then you must not feel compelled to do so. We recently ran a poll on our Facebook group to try to identify some concerns that people may feel with volunteering. The most frequent were:
- I live too far away.
This is fair enough. Most trials are based in or close to large cities and will ask you to travel to the trial centre regularly. There is no point in joining a trial if that journey is arduous and you would be unlikely to be able to travel at any point. - Worried about side effects.
Side effects happen when you are taking many medications and may well happen if you are taking a new treatment. However you will have a dedicated member of staff looking after you to remedy any that crop up, and if the worst happens and you cannot tolerate the side effect you can leave the trial with our thanks. You are always in control. - I am worried that I might be asked to stop taking my current medication and be given the placebo.
Before trials are run in the UK and many other countries they all must be passed by an ethics committee. The rules of ethics are guided by a number of national and international bodies to ensure ethical conduct, patient safety, and scientific validity. Allowing one arm of a trial to leave patients untreated for an infectious disease is generally unethical and unlikely to be approved, particularly if effective treatments are available. In most cases a test drug will be offered with standard treatment and compared with a placebo also with standard treatment. Neither arm will be untreated. NB once a new drug has gone through this phase and been shown to be effective at controlling eg aspergillosis, then it may be offered on its own during the next trial if ethics agree. - I rarely hear about any trial that I might be able to volunteer for.
Most people will hear about a trial when they are asked to join one by their doctor. Most doctors running a trial will check that you fall within the specific trial criteria before approaching you. This saves time but of course, it can only be successful if you see enough appropriate patients to ask, which is why specialist centres with lots of patients run so many trials. If you do not attend a specialist centre but would like to be assessed to participate in a trial you can ask your doctors or do your own research – click on the link below.
Thanks for considering taking part in a clinical trial.
NHS Complaint Procedures
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The NHS values feedback, both positive and negative, as it contributes to service improvement. If you are unhappy about the care, treatment, or service you've experienced from the NHS or a GP, you are entitled to make your voice heard. Your feedback could instigate changes that benefit both you and others in the future, and there are many reasons why it is important:
Accountability
Healthcare providers are responsible for delivering a high standard of care. When they fall short, they should be held accountable. Complaints can serve as a mechanism for this accountability.
Quality Improvement
Feedback is essential for any organisation that aims to improve. By pointing out what went wrong, you can help the NHS identify areas for improvement. This can lead to changes in procedures, training, and resource allocation, ultimately raising the quality of care for everyone.
Patient Safety
If you've experienced a lapse in the standard of care, others may have too. By bringing attention to the issue, you could be helping to prevent future mistakes that compromise patient safety.
Transparency
Hospitals and GP practices benefit from being transparent about their successes and failures. Complaints can be a form of data that helps the public and the organisation understand how well it is performing.
Empowerment
Making a complaint can be empowering for patients and families. It gives you a voice and can help you feel like an active participant in your healthcare rather than a passive recipient.
Legal and Ethical Reasons
In some cases, complaints may lead to legal action or disciplinary measures against healthcare providers who have been negligent or have violated professional standards.
Resource Allocation
Complaints can highlight areas where resources are lacking. This could lead to increased funding or other resources being allocated to address the issue.
Public Trust
Maintaining public trust is crucial for a publicly funded system like the NHS. Addressing complaints effectively is an integral part of maintaining this trust.
Understanding Your Rights
Before you proceed with a complaint, it's crucial to understand your rights as a patient. The NHS Constitution outlines these rights, which include:
- The right to high-quality care
- The right to be treated with dignity and respect
- The right to confidentiality
- The right to complain and have your complaint investigated
Initial Steps to Take
Identify the Issue
Before making a complaint, clearly identify the issue you're facing. Is it related to:
- Medical treatment?
- Staff attitude?
- Waiting times?
- Facilities?
Clearly understanding the issue will help you articulate your complaint more effectively.
Direct Communication with the Service Provider
If you're unhappy with an NHS service, it's often beneficial to discuss your concerns directly with the service, either with the clinician or the service manager. Many issues can be sorted out swiftly at this stage.
Patient Advice and Liaison Service (PALS)
Before moving on to formal complaints, you may want to speak to the Patient Advice and Liaison Service (PALS) who can:
•Help you with health-related questions
•Help resolve concerns or problems
•Tell you how to get more involved in your own healthcare
PALS can give you information about:
•The NHS
•The NHS complaints procedure
•Support groups outside the NHS
You can usually find a PALS office in NHS hospitals, or you can search for your nearest PALS online.
NHS Complaints Advocate
If you're contemplating making a formal complaint, you can seek assistance from an NHS complaints advocate. They can guide you in drafting a complaint letter and may accompany you to meetings. However, they cannot complain on your behalf.
Informal Complaints
Verbal Complaints
Sometimes, issues can be resolved quickly through informal channels. You can start by speaking directly to the clinician or a manager. This is often the quickest way to address minor concerns.
Written Complaints
If you're uncomfortable speaking directly or the issue is more serious, you can write an informal complaint via email or a letter. Make sure to include:
- Your name and contact details
- A clear description of the issue
- What you would like to happen as a result
Formal Complaints
Identifying the Appropriate Body
You can complain directly to the NHS service provider (such as a GP, dentist, or hospital) or to the commissioner of the services. If your complaint involves multiple organisations, you need only file one complaint, and the organisation that receives it will coordinate with the others.
Time Constraints
Complaints should ideally be made within 12 months of the incident or of becoming aware of the issue. This timeframe can be extended under specific conditions.
Methods of Filing a Complaint
Complaints can be lodged verbally, in writing, or via email. If you're filing a complaint on someone else's behalf, their written consent will be required.
What to Anticipate After Filing a Complaint
- Acknowledgement: You should anticipate an acknowledgement and an offer for a discussion regarding handling your complaint within three working days.
- Investigation: Your complaint will undergo an investigation, and you'll subsequently receive a written response outlining the findings, apologies if warranted, and actions taken as a result of your complaint.
- Ombudsman: If you're not content with the outcome, you can escalate your complaint to the Parliamentary and Health Service Ombudsman.
Alternative Avenues for Feedback
- Friends and Family Test (FFT): A quick and anonymous method for offering feedback.
- Patient Reported Outcome Measures (PROMs): Specifically for patients who have recently undergone hip or knee replacement surgery.
Your opinion matters. If you're dissatisfied with the healthcare services you've received, you have the right to file a complaint. However, it's worth noting that the way complaints are made and handled is also important. Complaints should be constructive, specific, and based on facts to be most effective. They should be made through the appropriate channels and following the procedures set out by the healthcare provider.
For more in-depth information, you can visit the NHS website.
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Living with & Managing Chronic Illness
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As many of you know, chronic conditions like Aspergillosis require more than just medical intervention. Chronic illnesses necessitate emotional resilience, adaptability, understanding, and physical strength. Patient-centric strategies have proven successful in managing illness and improving overall well-being and health outcomes, irrespective of the condition. The journey can be challenging, particularly when first diagnosed, but having an illness like Aspergillosis doesn't mean enduring a life of constant suffering.
What do we mean by manageable?
"Manageable" does not mean that your illness will completely disappear or you will no longer feel its effects. Instead, it means that the symptoms can be controlled to such an extent that they do not dominate your life or altogether remove your ability to function. Managing a chronic condition involves developing a comprehensive and tailored approach incorporating medication, lifestyle adjustments, emotional well-being, and social support.
Chronic conditions require more than medication
Understanding Your Illness
Knowledge is power. Understanding your illness, its symptoms, triggers, and progression will help you manage it more effectively. Ask your doctor(s) questions, do your own research, and consider joining support groups where you can learn from others' experiences.
Acknowledging limitations
When we discuss acknowledging limitations while living with Aspergillosis, there's a metaphor that captures this struggle: The Spoon Theory.
The Spoon Theory, conceived by Christine Miserandino, is a valuable metaphor within the chronic illness community to explain the energy required to live with such conditions. In this analogy, 'spoons' represent energy units. Each day, a person has a finite number of 'spoons' and must budget their activities to ensure they don't run out of 'spoons' before the day ends.
So, how does this relate to acknowledging limitations with Aspergillosis?
Physical Limitations
With Aspergillosis, common physical symptoms like fatigue or breathlessness may require more 'spoons' than usual. Understanding your body's signals and resting when necessary helps you conserve your 'spoons'.
Emotional Limitations
Chronic illness can be emotionally draining. It's normal to feel uncertain and anxious about your condition. According to the National Institute of Mental Health (NIMH), people with chronic illnesses may be more likely to suffer from depression. Therefore, depression is a common complication of chronic illness.
Managing feelings of anxiety or depression requires 'spoons'. Acknowledging your emotional health and seeking help and support when you need it can assist in managing your emotional energy better.
Social Limitations
Every social activity costs 'spoons'. While it's crucial to maintain a social life, it's equally important to recognise when you might need to prioritise rest and recovery.
Work Limitations
The energy expended at work needs to be factored into your 'spoon' budget. Sometimes, it may require a conversation with your employer to adjust your workload or responsibilities to accommodate your health needs.
Understanding and applying the Spoon Theory to your life can be a powerful tool in acknowledging and managing your limitations. It's not about resigning yourself to these limitations but prioritising and becoming effective at working around them.
Each of you will have a different number of 'spoons' each day, and what may cost one spoon for some may cost five for another. That's why it's so crucial to respect and acknowledge our boundaries.
The power of exercise
Exercise plays an integral role in maintaining our health and well-being. Regular physical activity can significantly improve quality of life, boost mood, enhance lung function, and strengthen the immune system. However, the thought of exercise might seem daunting given the physical constraints of Aspergillosis. But it's about finding what works best for you.
Exercise that suits your abilities
Remember, the objective is not to exhaust yourself but to gradually improve your endurance and strength within your limits. Lower-intensity activities such as walking, stretching exercises, or chair-based workouts can be beneficial starting points. Even small activities like light household chores can contribute to your daily exercise.
Pulmonary Rehabilitation
These are programmes specifically designed for people with lung conditions. They involve a combination of exercises to improve lung function, education, and emotional support. Trained healthcare professionals supervise these programmes to ensure safety and efficacy.
Breathing exercises
Exercises like pursed-lip or diaphragmatic breathing can improve lung capacity and help manage breathlessness, a common symptom in Aspergillosis.
Yoga and Meditation
Gentle yoga poses combined with mindful breathing can improve flexibility, balance, and strength while also helping with stress management.
Staying consistent
The key is regularity rather than intensity. Even 10-15 minutes of exercise daily can make a difference. As your endurance builds, you can gradually increase the duration and possibly the intensity of your workouts.
Work with professionals
Always consult your care team before starting a new exercise regimen. They can guide you.
Listen to your body
Most importantly, listen to your body. If you feel excessively tired or experience difficulty breathing, it's time to rest. Remember, acknowledging your limits is not a weakness; it's an essential part of managing your health.
Mental health matters
Living with a chronic illness like Aspergillosis can be physically challenging, but it also exacts a toll on our mental health. Anxiety, depression, stress, and feelings of isolation are not uncommon. Acknowledging these emotions and finding ways to manage them is as important as managing the physical symptoms of the illness.
Understanding the Impact
Chronic illnesses can lead to a range of emotional responses: fear about what the future holds, frustration over physical limitations, feelings of isolation due to changes in lifestyle or others' inability to fully understand your experience. Understanding that these are normal reactions to your situation is the first step towards addressing them.
Communication
One of the most powerful tools in managing mental health is open communication. This could be with family, friends, a support group, or a professional counsellor. Discussing your feelings can provide relief and offer new perspectives.
Professional Help
Psychologists, psychiatrists, and therapists can provide strategies to cope with the stress, anxiety, and depression that can accompany chronic illnesses. Cognitive-behavioural therapy, mindfulness-based stress reduction, and other techniques can help you navigate your emotional journey.
Peer Support
We talk about this a lot, and many of you reading this will already realise the benefits because you attend our weekly meetings. Connecting with others who are dealing with similar experiences can be incredibly helpful. Support groups provide a platform to share experiences, learn from others, and gain emotional comfort from knowing you're not alone.
Self-care
Prioritise activities that you enjoy and that help you relax. This could be reading, listening to music, gardening, or any hobby that provides a sense of calm. Mindfulness exercises, yoga, and meditation can also be effective in reducing stress and promoting mental well-being.
Depression is not a weakness
It's not just the physical discomfort and limitations that pose a challenge. Still, the emotional burden carried with a persistent health condition can also be substantial. Thus, depression is a common complication of chronic illness. Still, it doesn't have to be a normal part of chronic illness. Depression can manifest through persistent sadness, loss of interest in previously enjoyed activities, difficulty sleeping, or changes in appetite. It's important to recognise that depression is not a sign of weakness or a normal part of living with a chronic illness. It's a serious but treatable condition. If you or someone you care for shows signs of depression, seeking help from healthcare professionals is crucial. Therapies such as cognitive-behavioural therapy, medication, or a combination of both can effectively manage depression. Remember, taking care of your mental health is a critical part of managing a chronic illness.
Remember, it's okay to have tough days. Your illness does not define you, and it's okay to ask for help when needed. Celebrate your achievements, no matter how small, and focus on the strengths that help you navigate your challenges.
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Unblocking Airways: New approaches to preventing mucus plugs
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Excess mucus production is a common problem in people with Allergic Bronchopulmonary Aspergillosis (ABPA), and chronic pulmonary aspergillosis (CPA). Mucus is a thick mixture of water, cellular debris, salt, lipids, and proteins. It lines our airways, trapping and removing foreign particles from the lungs. The gel-like thickness of mucus is caused by a family of proteins called mucins. In individuals with asthma, genetic changes to these mucin proteins can thicken the mucus, making it more difficult to clear from the lungs. This thick and dense mucous builds up and can lead to mucus plugs, blocking the airways and causing breathing difficulties, wheezing, coughing, and other respiratory symptoms.
Doctors usually treat these symptoms with inhalable medications such as bronchodilators and corticosteroids to open the airways and reduce inflammation. Mucolytics can also be used to break down mucus plugs, but the only available medication, N-Acetylcysteine (NAC), is not very effective and can cause unwanted side effects. While current treatments can help manage symptoms, there is a need for effective and safe treatments to directly address the issue of mucus plugs.
To address this issue, 3 approaches are being explored:
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- Mucolytics to dissolve mucus plugs
Researchers at the University of Colorado are testing new mucolytics such as tris (2-carboxyethyl) phosphine. They gave this mucolytic to a group of asthmatic mice experiencing inflammation and excess mucus production. After treatment, mucus flow improved, and the asthmatic mice could clear mucus just as effectively as the non-asthmatic mice.
However, mucolytics work by breaking the bonds which hold mucins together, and these bonds are found in other proteins in the body. If the bonds are broken in these proteins, it could lead to unwanted side effects. Therefore, further research is needed to discover a drug that will only target the bonds in mucins, reducing the risk of side effects.
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2. Clearing crystals
In another approach, Helen Aegerter and her team at the University of Belgium are studying protein crystals which they believe drive mucus overproduction in asthma. These crystals, known as Charcot-Leyden crystals (CLC’s) cause mucus to become thicker, therefore harder to clear from the airways.
To address the crystals directly, the team developed antibodies that attack the proteins in the crystals. They tested the antibodies on mucus samples collected from individuals with asthma. They found that the antibodies effectively dissolved the crystals by attaching themselves to the specific regions of the CLC proteins that hold them together. In addition, the antibodies dampened inflammatory reactions in mice. Based on these findings, the researchers are now working on a drug that could have the same effect in humans. Aegerter believes that this approach could be used to treat a variety of inflammatory diseases that involve excessive mucus production, including sinus inflammation and certain allergic reactions to fungal pathogens (such as ABPA).
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- Preventing excess secretion of mucus
In a third approach, pulmonologist Burton Dickey of the University of Texas is working to prevent mucus plugs by reducing the overproduction of mucus. Dickey's team identified a specific gene, Syt2, that is only involved in excessive mucus production and not in normal mucus production. To inhibit excess mucus production, they developed a drug called PEN-SP9-Cy that blocks Syt2's action. This approach is particularly promising as it targets mucus overproduction without interfering with the vital functions of normal mucus. Normal mucus production plays a critical role in protecting and maintaining the health of the respiratory and digestive systems. Although the initial results are promising, further research is necessary to evaluate the efficacy and safety of these drugs in clinical trials.
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In summary, mucus plugs present uncomfortable symptoms in ABPA, CPA and asthma. Current treatments focus on symptom management rather than directly addressing reduction or removal of mucus plugs. However, researchers are exploring 3 potential approaches, involving mucolytics, clearing crystals, and preventing excess mucus secretion. Additional research is required to confirm their effectiveness and safety, but approaches have shown promising results and may in future be one way we can prevent mucus plugs.
Further information:
Phlegm, mucus and asthma | Asthma + Lung UK
How to loosen and clear mucus
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COVID Vaccination Side Effects
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="7px||7px||true|false"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]Now that the rollout of the second COVID vaccination (using the Pfizer/BioNTech and Oxford/AstraZeneca vaccines) are well underway in the UK attention in our aspergillosis patient communities has turned to the potential for side effects caused by these medications.
Most people suffer few or no side effects from either vaccine other than having a slightly sore arm for a day or two or feeling a few aches. Doctors are recommending that we take paracetamol to relieve those symptoms.
The UK government has now published more detailed information on side effects and all three vaccinations currently in use in the UK (a third vaccine named Moderna has recently started to be used). You can read this information at the links below:
You can also report any suspected side effect.
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