GAtherton, Author at Aspergillosis Patients & Carers Support

🩹 Caring for Fragile Skin and Wounds When You're on Long-Term Steroids

A practical guide for patients and carers

If you take long-term steroid medication (such as prednisolone or hydrocortisone), you may have noticed your skin becoming thinner, more fragile, and slower to heal. Even a small bump can cause the skin to split or bleed, and wounds can sometimes leave behind rolled-up or crumpled skin edges.

This guide offers practical, gentle steps to help you manage these wounds safely and support healing.

💥 Why does steroid-thinned skin split so easily?

Steroids weaken the skin by:

Thinning the outer layers
Reducing collagen and connective tissue
Making small blood vessels more fragile

This makes the skin prone to tearing and bruising, especially on the arms, chest, and legs — even from minor knocks or pressure.

🩸 What to do if your skin splits and bleeds

Step-by-step first aid:

Clean gently
- Use lukewarm water and mild soap or saline
- Pat dry — don’t scrub
Stop bleeding
- Apply light pressure with a clean cloth or sterile gauze
- Be patient — bleeding may take longer to stop
Protect the wound
- Apply a non-stick dressing (e.g. Melolin, Mepilex, or Adaptic)
- Secure gently with paper tape or soft bandage — avoid sticky plasters that may damage skin when removed
Keep it moist
- Use a simple ointment like Vaseline, Epaderm, or Cetraben
- Moisture helps the skin heal more quickly and reduces scabbing
Watch for infection
- Look out for redness spreading, pus, warmth, or pain
- If this happens, contact your GP or nurse

🟣 What if there’s rolled-up skin around the wound?

This is common when the top layer of skin tears and crumples. Here's what to do:

✅ If the skin is still attached:

Do not pull or cut it off
Gently lay it back over the wound like a natural dressing
Cover with a moist, non-stick dressing

✅ If it’s dead or dry:

Leave it in place for now
Ask a nurse or GP to remove it safely at your next dressing change

❌ Do not try to trim it yourself

Even small cuts can lead to bleeding, infection, or more tearing. Let a professional assess it first.

🧴 Daily skin care to prevent splits and bruising

Moisturise daily with thick creams (like Cetraben, Epaderm, or Diprobase)
Wear soft clothing to reduce rubbing
Use padding or bandages on vulnerable areas (e.g. forearms) if you're active
Avoid harsh soaps and antiseptics like Dettol or TCP
Use paper tape or silicone dressings to avoid trauma when removing plasters

🗣️ Talk to your healthcare team if:

Wounds are slow to heal
You're getting frequent tears or bruises
You’ve noticed signs of infection
You need help with dressings or pain relief
You're unsure about your steroid dose or if you're on replacement therapy

You may benefit from a review by a nurse, pharmacist, or dermatologist who can suggest extra skin protection or dressing supplies.

💬 Final reassurance:

If your skin is tearing more easily, it’s not your fault — it’s a known effect of steroids, and there are gentle, effective ways to protect yourself.
Don’t hesitate to ask for help with wound care — and always speak up if something doesn’t feel right.

by GAtherton

Understanding the Different Types of Chronic Pulmonary Aspergillosis (CPA)

CPA is a long-term lung condition caused by a common fungus called Aspergillus. It usually affects people who already have lung damage — from infections like tuberculosis (TB), conditions like COPD or asthma, or diseases such as sarcoidosis.

There are five main types of CPA. Knowing which one you have can help guide your treatment and follow-up.

🟠 1. Chronic Cavitary Pulmonary Aspergillosis (CCPA)

Most common form

Caused by Aspergillus growing in one or more cavities in the lungs
Cavities may slowly get larger or thicker
Often develops in people with previous lung disease

Symptoms:

Long-term cough
Fatigue and weight loss
Breathlessness
Sometimes mild or moderate coughing up blood

Treatment: Long-term antifungal tablets (e.g. itraconazole or voriconazole)

⚠️ 2. Chronic Fibrosing Pulmonary Aspergillosis (CFPA)

Advanced stage of CPA

Happens when long-term infection causes lung scarring (fibrosis)
Lungs become stiff, making breathing harder

Symptoms:

Worsening breathlessness
Low oxygen levels
Severe fatigue

Treatment: Focuses on antifungals, symptom relief, and oxygen if needed

🟢 3. Simple Aspergilloma

A single fungal ball in a lung cavity

A round ball of fungus (aspergilloma) forms in an existing lung cavity
Often found during scans done for other reasons
Some people have no symptoms at all

Main risk: Coughing up blood (sometimes serious)

Treatment:

Monitoring if mild
Surgery or embolisation if bleeding occurs

🔴 4. Subacute Invasive Aspergillosis (SAIA or CNPA)

Faster-moving form of CPA

Occurs over weeks to months
Often seen in people with weaker immune systems (e.g. due to diabetes, steroids, or alcohol dependence)
Infection starts to invade deeper lung tissue

Symptoms:

Fever
Worsening breathlessness
Severe weight loss

Treatment: Prompt antifungal treatment and close medical monitoring

🟡 5. Aspergillus Nodules

Small lumps caused by Aspergillus

These are solid nodules in the lungs, often found by chance on a CT scan
They may be mistaken for cancer at first
Often cause no symptoms

Treatment:

Usually watch and wait
Sometimes surgery or biopsy if uncertain

🩺 Why Knowing Your CPA Type Matters

Understanding your CPA type helps your medical team:

Choose the best treatment for you
Monitor for bleeding or lung damage
Decide when to repeat scans or adjust medication

💬 Questions to Ask Your Doctor

Which type of CPA do I have?
Will I need long-term antifungal treatment?
How often should I have scans or blood tests?
What should I do if I cough up blood?

🧘 Final Note

CPA is a chronic condition, but many people manage it well with the right treatment and regular check-ups. You are not alone — support and information are available.

by GAtherton

🌿 The Different Forms of ABPA

Understanding Your Diagnosis and What It Means

Allergic Bronchopulmonary Aspergillosis (ABPA) is a condition where your immune system overreacts to a fungus called Aspergillus fumigatus, which can be found in air, soil, and compost. This allergic reaction happens mostly in people with asthma or bronchiectasis.

But not everyone with ABPA has the same experience. Doctors now recognise that ABPA can appear in several different forms or stages, depending on how far it has progressed and what’s happening in your lungs.

Here’s a simple guide to help you understand where you might fit — and what it means for your care.

✅ 1. ABPA-S (Serologic ABPA) — The early stage

This is the mildest form of ABPA. It means your immune system is reacting to Aspergillus, but your lungs haven’t been damaged yet.

What’s usually found:

High levels of IgE (allergy antibodies)
Positive test for Aspergillus-specific IgE
Normal or near-normal scans (X-ray or CT)
Asthma or mild chest symptoms

🟢 This form is often picked up with blood tests before any permanent changes in the lungs happen.

🟠 2. ABPA-CB — ABPA with Central Bronchiectasis

This is a more typical form of ABPA, where the ongoing allergic reaction has started to damage your airways. “Bronchiectasis” means some airways have become widened and scarred.

What’s usually found:

All of the features above plus
Changes on a CT scan showing central bronchiectasis
More mucus, coughing, or breathlessness

🟠 This form may need regular treatment to reduce inflammation and protect the lungs.

🔴 3. Severe ABPA — ABPA with frequent flares

This isn’t a separate type, but a more active or harder-to-control version of ABPA.

What’s usually happening:

Frequent flare-ups (exacerbations)
Need for ongoing steroids or antifungals
Possible use of biologic medicines (e.g. Xolair/omalizumab)
More serious asthma symptoms

🔴 This form can still be well-managed, but needs close monitoring and a good treatment plan.

⚠️ 4. ABPA-CPF — ABPA with Lung Scarring (Fibrosis)

This is the late stage of ABPA, where ongoing inflammation over many years has caused permanent damage to the lungs. It’s now much rarer thanks to earlier diagnosis and treatment.

What’s usually found:

Extensive scarring or fibrosis on lung scans
Breathlessness or tiredness
May overlap with another condition called chronic pulmonary aspergillosis (CPA)

⚠️ This stage needs careful support, but many people can still manage symptoms and improve quality of life.

📈 How doctors track your ABPA

Some doctors will also use stages to describe how your ABPA is behaving, though this does not comply with the most recent guidelines (ISHAM 2024):

Stage 0 – No symptoms, but abnormal blood test
Stage 1 – Newly diagnosed (active symptoms)
Stage 2 – Responding to treatment
Stage 3 – In remission (no active disease)
Stage 4 – Flare-up
Stage 5 – Long-term lung damage (fibrosis)

🩺 Why this matters to you

Knowing what form of ABPA you have helps you and your healthcare team:

Choose the right treatments
Decide how often you need scans or blood tests
Spot early signs of flare-ups
Protect your lungs from long-term damage

💬 Final message:

No matter which form you have, there are treatments that work. Many people with ABPA live full lives with the right support.
If you're unsure what form of ABPA you have, ask your doctor — it can help you understand what to expect and how to take care of your lungs.

by GAtherton

🧪 Understanding Blood Tests in ABPA-S

How Aspergillus-specific IgE and Eosinophil Counts Help with Diagnosis

If you’ve been told you might have Allergic Bronchopulmonary Aspergillosis – Serologic type (ABPA-S), you’ve probably had blood tests measuring your Aspergillus-specific IgE and your eosinophil count. These markers help doctors understand whether your immune system is reacting unusually to a common fungus called Aspergillus fumigatus.

This article explains what those tests mean — and why normal results don’t always rule out ABPA-S.

🌾 What is Aspergillus-specific IgE?

This blood test checks whether your immune system is producing allergy antibodies (IgE) against Aspergillus fumigatus. High levels suggest that your body is reacting to this fungus — a key sign in ABPA.

What do the results usually look like in ABPA-S?

Above 0.35 kUA/L – this is the minimum level needed for ABPA diagnosis
Above 1.5–6.5 kUA/L – this is very common in ABPA-S
Above 20 or even 50 kUA/L – these are often seen in more active or severe cases

🔍 Low or normal levels (below 0.35) are rare in ABPA-S unless:

You are already receiving treatment
You are in remission
There was a problem with the test
Your condition might be a different type of fungal allergy

So if your Aspergillus-specific IgE is high, that strongly supports the diagnosis. If it’s low, your doctor may retest or look at other factors.

🧬 What is an eosinophil count?

Eosinophils are a type of white blood cell linked to allergic inflammation. In many allergic conditions, including ABPA-S, these levels can go up.

What levels are typical in ABPA-S?

Above 500 cells/µL – commonly seen in untreated or active ABPA-S
Above 1,500 cells/µL – often seen in flare-ups
Below 500 cells/µL – can occur in people with milder disease or if they’ve started treatment

🟡 Normal eosinophils are not rare in ABPA-S
Many people with ABPA-S — especially those already on steroids or antifungals — may have eosinophil levels in the normal range. Up to a third of people with ABPA-S may show normal counts at some point.

🩺 What This Means for You

Test	What’s Common in ABPA-S	Is It Rare in ABPA-S?
Aspergillus-specific IgE	High levels (often >1.5 or 6.5)	Low or normal levels are rare
Eosinophils	High counts often seen	Normal counts are not rare, especially during treatment

So if your blood tests show:

High Aspergillus-specific IgE → that strongly supports ABPA-S
Normal eosinophils → this does not rule it out

💬 What patients often ask:

“Can I have ABPA-S with normal eosinophils?”

Yes. Especially if you’re already on steroids, or your symptoms are mild, your eosinophil count may appear normal.

“Does a low Aspergillus-specific IgE mean I don’t have ABPA?”

Not necessarily. Your doctor will consider your symptoms, scan results, and other blood tests too. Sometimes the test needs repeating.

🤝 Patient voices matter

If you’ve had these tests and been diagnosed with ABPA-S, sharing your experience can help others feel less alone — and more informed when navigating lab results.

Need help understanding your lab report?

Ask your care team:

What was my Aspergillus-specific IgE level?
What was my eosinophil count?
Are these results typical for someone with ABPA-S like mine?

Understanding your blood tests can help you take more confident steps in managing your condition.

by GAtherton

🦠 From Baby Guts to Adult Lungs: Why Your Microbiome Matters More Than You Think

We often think of gut bacteria as something that helps with digestion—but new research is showing they do much more than that. In fact, the tiny microbes in your gut may be playing a major role in protecting your lungs, especially from infections and long-term inflammation.

A recent UK study found that newborn babies with a healthy balance of gut bacteria had half the risk of serious lung infections. But what does this mean for people living with chronic lung conditions like aspergillosis?

Let’s take a look.

👶 The Baby Biome Breakthrough

Researchers followed over 1,000 babies in the UK for the first two years of life. They found that those with high levels of Bifidobacterium—a helpful gut bacteria—were far less likely to be hospitalised with chest infections like bronchiolitis.

This protective effect was:

Most common in babies born vaginally
Linked to how the immune system developed early on
Thought to involve chemical signals from the gut to the lungs, helping the lungs prepare for infections

In short: a baby’s gut bacteria helped protect their lungs.

🫁 What Does This Have to Do With Chronic Aspergillosis?

If you have a chronic condition like Chronic Pulmonary Aspergillosis (CPA), Allergic Bronchopulmonary Aspergillosis (ABPA) or aspergillus bronchitis, this research might feel far removed—but it’s actually quite relevant.

Here’s why:

1. The gut and lungs are connected

Known as the gut-lung axis, this two-way communication means that what’s happening in your digestive system can affect how your lungs respond to inflammation, infection, and allergens.

2. Long-term medications can harm gut balance

People with aspergillosis often need antifungal medicines, steroids, or antibiotics—all of which can disturb the natural balance of gut bacteria. This may weaken the immune system’s ability to manage fungal growth or increase inflammation in the lungs.

3. A healthier gut may support immune stability

Although the research is still developing, supporting a healthy gut microbiome might help reduce flare-ups, inflammation, or secondary infections—especially if you’ve had lots of antibiotics or are steroid-dependent.

🌿 What Can You Do?

While we don’t yet have a proven probiotic "treatment" for aspergillosis, there are safe and practical steps you can take to support your microbiome and, potentially, your lung health:

Eat more plant fibre (e.g. oats, vegetables, legumes)
Limit ultra-processed foods
Consider fermented foods like kefir, sauerkraut or yoghurt—only if tolerated and not contraindicated (important in ABPA)
Ask your doctor if a probiotic supplement might help you—especially if you’ve had frequent antibiotics or digestive symptoms
Avoid unnecessary antibiotic use

⚠️ Always check with your healthcare team before starting new supplements, especially if you're on antifungals or immunosuppressants.

🧪 What’s Next?

Researchers are already testing whether giving newborns the right bacteria (like Bifidobacterium longum) in the first few weeks of life can prevent infections. Similar trials may follow in older children and adults with chronic lung conditions.

For now, the message is clear:

Looking after your gut health isn’t just about digestion—it could be an important part of protecting your lungs too.

by GAtherton

🧾 Why Do Some People Need Higher Doses of Antifungal Medication?

If you're being treated for ABPA or another aspergillosis-related condition, you might wonder why your doctor has prescribed you a higher or lower dose of your antifungal medication than someone else. You're not alone—this is a common and important question.

The answer is that antifungal medicines don't work the same way in everyone. Your dose may need adjusting based on how your body handles the medication.

🔍 Here's why doses can vary from person to person:
1. Absorption differences
Some antifungal medicines (like itraconazole capsules) are harder for the body to absorb.

Things like what you eat, how acidic your stomach is, or even other medications can affect how well your body takes in the drug.

For example, acid blockers like omeprazole can reduce absorption.

2. How your body processes the drug
Your liver breaks down antifungal medicines.

Some people process them very quickly (which can make the drug less effective), while others process them slowly (which can increase side effects).

This is due to genetic differences, and you can’t predict it without blood tests.

3. Other medications you're taking
Some drugs interfere with antifungals, making them work less well or increasing side effects.

Your doctor might need to adjust your antifungal dose to compensate.

4. Your weight and body size
People with larger body size or more body fat may need a slightly higher dose to get the drug to the right level in the lungs.

5. How severe your condition is
If your ABPA or infection is more severe, your doctor may aim for a higher drug level in your body to make sure it works well.

🧪 Why do I need blood tests?
To make sure your antifungal is working properly, your doctor might check blood levels of the drug. This helps:

Avoid side effects if the level is too high

Make sure it’s effective if the level is too low

This is especially important for itraconazole and voriconazole.

✅ Key points to remember:
Your dose is personalised to you.

Don’t compare your dose to someone else’s—it’s not a one-size-fits-all treatment.

Always take your medication exactly as prescribed, and let your doctor know if you’re taking any new medicines, including over-the-counter ones.

by GAtherton

Are there withdrawal effects once voriconazole is stopped?

There are no classic withdrawal effects in the way we think of for drugs like steroids, opioids, or benzodiazepines when voriconazole is stopped. However, some patients do experience transient symptoms or rebound effects, especially if the drug was managing an active infection or inflammation.

Here’s what you should know:

✅ What Usually Happens When Voriconazole Is Stopped?

1. No physiological withdrawal syndrome

Voriconazole does not cause dependence or withdrawal at a chemical level.
You don’t need to taper it for pharmacological reasons — it can generally be stopped abruptly.

⚠️ But Some Symptoms May Still Appear

These aren’t “withdrawal” symptoms in the classical sense, but can occur:

A. Return of underlying symptoms

If the aspergillosis was only partially controlled, symptoms like cough, chest pain, or fatigue may recur.
Especially in CPA or ABPA, stopping antifungals too soon can cause flare-ups.

B. Immune rebound

Very rarely, immune reconstitution reactions (like in ABPA or after neutropenia) may occur as the immune system re-engages with fungal antigens.
This is not true withdrawal, but a host response shift.

C. Psychological or sensory changes

Some patients who had visual disturbances or strange dreams while on voriconazole report a brief “readjustment” period after stopping (often relief, but occasionally some lingering discomfort).
These effects usually resolve quickly.

👩‍⚕️ What To Watch For After Stopping

Symptom	Likely Cause	What to Do
Return of cough, sputum, fatigue	Infection flaring again	Recheck IgE, CRP, imaging, sputum
Headache, dizziness	Rarely linked to stopping, more likely underlying illness or fatigue	Monitor; seek review if worsening
Mood shifts, anxiety	Possibly related to underlying illness stress, or stopping long-term meds	Supportive care, discuss with clinician

🧾 Summary

No true withdrawal syndrome with voriconazole
Symptoms that return are usually related to underlying disease or immune changes
Best to stop under specialist advice, ideally with a plan for monitoring over 2–6 weeks

by GAtherton

🧠 Understanding Health Evidence: A Guide for Patients

This guide helps patients and the public understand how to judge the quality of health information, especially around treatments, supplements, and medical claims.

🔬 How Science Works

Medical advice and treatments are ideally based on well-tested science. Here’s how that process usually works:

Research is done by scientists who ask questions and collect data.
Peer review: Experts examine the study to ensure it’s fair and thorough.
Publication: If it passes peer review, it's published.
Replication: Other researchers try to repeat it. If they can't, confidence in the findings drops.

One study rarely proves something on its own. Medical certainty comes when multiple high-quality studies agree.

📊 Assessing the Strength of Evidence

🔎 Use these steps to check whether a claim is solid or uncertain:

Is it based on one study or a pattern of studies?
Has the result been replicated by others?
Is it a randomised controlled trial, or a weaker type (like a case report)?
Does it appear in a systematic review or meta-analysis?
Was it published in a known, peer-reviewed journal?

Always check with a trusted clinician if unsure.

🌐 Trusting Online Medical Information

Look out for:

✅ NHS, NICE, university, or respected charity sources ✅ References to studies or expert guidelines ✅ Recently published or reviewed content ❌ Claims that sound too good to be true ❌ Articles trying to sell you something

Good places to check information:

🧾 Scientific Journal Quality and Bias

Even good journals may publish studies with industry funding. That’s not wrong by itself, but look out for signs of bias:

Conflict of interest statements (often near the beginning or end)
Funding sources: Drug companies vs. independent organisations
How results are framed: Are benefits overstated? Risks ignored?
Compare with other studies: Are the results too good to be true?

The strongest evidence comes from independent replication.

🌿 Herbal Remedies and Industry Influence

Some believe herbal treatments are suppressed by drug companies. In truth:

Most herbal products haven’t had large, well-run trials.
Companies don’t fund them because they can’t be patented.
It’s not suppression — it’s a lack of commercial incentive.

Even if early research looks good, we need repeatable, well-controlled studies to ensure safety and effectiveness.

Doctors can’t recommend unproven treatments — not because they don’t work, but because we don’t yet know enough.

⚠️ Unrecognised Syndromes and Clinics

Some private clinics promote treatments for self-defined syndromes. They often:

Rely on a few early or small studies
Use unrecognised diagnostic tools
Sell unproven or expensive treatments

Mainstream medicine needs strong, repeated evidence before accepting a new condition or treatment. It’s about safety and evidence, not disbelief or conspiracy.

⚖️ Is It Legal — and Ethical?

In many countries, including the UK, it is legal for clinics to offer non-mainstream treatments if they do not break safety, advertising, or professional conduct laws. However, legality does not always mean ethical acceptability.

Offering treatments that are unsupported by high-quality evidence may be seen by many as amoral or unethical, especially when:

Patients are vulnerable or desperate
Treatments are expensive
Claims are overstated or misleading
Alternatives with better evidence are not discussed

Healthcare professionals are expected to put patient welfare before profit, be transparent about evidence limitations, and avoid offering false hope. Patients should always ask questions, seek second opinions, and verify claims with trusted sources.

Some private clinics promote treatments for self-defined syndromes.

They often:

Rely on a few early or small studies
Use unrecognised diagnostic tools
Sell unproven or expensive treatments

Mainstream medicine needs strong, repeated evidence before accepting a new condition or treatment. It’s about safety and evidence, not disbelief or conspiracy.

Other examples of self-defined or poorly validated syndromes promoted by certain clinics include:

Adrenal fatigue (not the same as adrenal insufficiency)
Leaky gut syndrome (distinct from recognised intestinal permeability disorders)
Multiple chemical sensitivity (MCS)
Chronic Lyme disease (as distinct from recognised post-treatment Lyme syndrome)
Sick building syndrome (& similar relating to treating those in a damp home)

These conditions are often treated with:

Specialised tests with unclear scientific validity
Supplements, detox regimes, or off-label drug use
Expensive personalised programmes with limited oversight

📉 Predatory Journals and Peer Review

Some journals publish low-quality or unreviewed research for money. Warning signs:

❌ Generic names, vague editorial boards, fast publication ✅ Indexed in PubMed, Web of Science, or Scopus ✅ Member of COPE or listed in DOAJ

Peer-reviewed journals differ in quality. Just because something is published doesn’t mean it’s reliable.

by GAtherton

✈️ Hints & Tips: Travel Guide for Aspergillosis Patients

This detailed article is designed to help patients with aspergillosis (including CPA, ABPA, SAFS, and those on antifungals or steroids) prepare for safe and enjoyable travel. It includes a complete travel plan, medication management, oxygen guidance, and destination risk information.

📚 Menu

Planning and Medication Management
Asthma, Photosensitivity, and Insurance
Travelling with Oxygen Therapy
Regions Riskier for Aspergillosis or Asthma
Driving and Motorbiking Concerns
Wheelchair Support When Travelling
Why a Pulse Oximeter May Be Useful When Travelling
Additional Resources
Final Travel Checklist

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🧳 Planning and Medication Management

✅ Plan Ahead

Request repeat prescriptions 3–4 weeks before travel.
Coordinate hospital-only meds (e.g. posaconazole, biologics).
Obtain a doctor's letter listing your diagnosis, meds, doses, and any special handling (e.g., refrigeration).

🎒 Pack Smart

Bring enough medication for the trip + 7 extra days.
Keep meds in original packaging with pharmacy labels.
Split meds between hand luggage and checked bags.
Carry a paper and digital medication list.

❄️ Storage Requirements

Use a travel cool bag for biologics or antifungals that require refrigeration.
Ask hotels for a fridge or minibar in your room.
Bring a digital thermometer to monitor storage conditions.

🌍 Getting Meds Abroad (Emergency Only)

Private doctors/pharmacies may help with basic meds, but antifungals are rarely stocked.
NHS prescriptions won’t be accepted abroad; some private scripts might.
Register for an EHIC/GHIC card if travelling in Europe.

🛃 Customs and Legal

Check import laws: www.gov.uk/travelling-controlled-drugs
Keep meds in carry-on during flights.

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🌬️ Asthma, Photosensitivity, and Insurance

Asthma Risks While Travelling

Triggers: dry air, cold air, perfume, anxiety, smoke
Always carry your rescue inhaler
Use a preventer consistently in the lead-up to travel
Pack a spacer if used

Photosensitivity (especially on Voriconazole)

Use SPF 50+, cover up with UV-blocking clothing
Avoid direct sunlight between 10am–4pm
Be careful near windows or during flights

Travel Insurance Challenges

Declare aspergillosis, asthma, biologics, antifungals, hospitalisations
Use specialist providers (e.g., AllClear, Insurancewith, Avanti)
Get a GP letter confirming stability

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🫁 Travelling with Oxygen Therapy

Planning Ahead

Get a letter from your doctor about oxygen requirements
Book a pre-flight oxygen assessment if needed

Flying with Oxygen

Notify airlines 3–4 weeks in advance
Check if onboard oxygen or POCs (Portable Oxygen Concentrators) are accepted
Bring enough batteries (150% of flight duration)

Travelling in the UK or EU

Arrange oxygen through providers like Baywater Healthcare or Dolby Vivisol
Outside UK/EU: you’ll likely need private supply — plan in advance

Legal and Insurance Notes

Declare oxygen use in travel insurance
Carry pulse oximeter and chargers

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🌍 Regions Riskier for Aspergillosis or Asthma

🔥 High-Risk Areas

Tropical/humid countries: SE Asia, India, Sub-Saharan Africa, Brazil
Dusty deserts: Arizona (USA), Middle East, North Africa
Polluted cities: Delhi, Beijing, Cairo, Lagos, some UK cities during heatwaves

Safer Destinations

Northern Europe, Scandinavia, highland areas, and coastal regions with good air quality.

Tips:

Avoid mouldy buildings, dusty markets, unregulated AC systems.
Wear FFP2/FFP3 masks in high-risk environments.
Stay indoors during dust storms or poor air quality alerts.

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🛵 Driving and Motorbiking Concerns

Medication Side Effects That Can Impair Driving

Medication	Risk
Voriconazole	Visual disturbance, hallucinations
Steroids	Mood changes, insomnia
Painkillers (opioids)	Drowsiness, slowed reaction

DVLA Guidelines

Inform DVLA if your condition or meds impair driving
Check: gov.uk/health-conditions-and-driving

Biking and Sun Risk

Long UV exposure while biking is dangerous on voriconazole
Use UV-blocking visors, wear protective clothing

Other Tips

Avoid long journeys without breaks
Keep hydration and rescue meds close

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♿ Wheelchair Support When Travelling

Airport Wheelchair Support

Request wheelchair assistance when booking your flight.
Arrive early and inform check-in or help desks of your needs.
Most airports have dedicated support staff to help with boarding, disembarking, and security checks.

Travelling with Your Own Wheelchair

Airlines allow you to bring your own manual or electric wheelchair free of charge.
Label your chair clearly and bring any detachable parts in your carry-on.

Hotel Accessibility

Contact hotels in advance to confirm:
- Step-free access
- Lift availability
- Wheel-in showers or accessible bathrooms

Rental Options

Many cities have wheelchair rental services — check availability online before travelling.

🩺 Why a Pulse Oximeter May Be Useful When Travelling

A pulse oximeter is a small device that clips onto your finger to measure your blood oxygen levels (SpO₂) and pulse rate. For aspergillosis patients, especially those with CPA, ABPA, or coexisting conditions like asthma or bronchiectasis, oxygen levels can drop unexpectedly during illness, flight, or physical exertion.

Having a pulse oximeter can help you:

Monitor for early signs of low oxygen during travel or exertion
Track changes if you're recovering from infection or flare-up
Provide data to healthcare providers during emergencies

They're small, affordable, and highly recommended when travelling, especially if you use oxygen, have unstable symptoms, or are flying.

📄 Additional Resources

Asthma + Lung UK: Travel Safely with a Lung Condition

Asthma + Lung UK's web guide on travelling safely with a lung condition offers clear and practical advice for every step of the journey. Key topics include:

Planning ahead: Inform your healthcare team early and check vaccination and visa requirements.
Medication and equipment: Tips for transporting oxygen, packing extra meds, and navigating airport security.
Flying: How to prepare if you need oxygen or are concerned about air pressure and dry air on planes.
Travel insurance: Advice on declaring lung conditions and finding appropriate cover.
During your trip: Staying safe in heat or cold, managing humidity and pollution, and what to do in an emergency.

This guide is especially useful for patients with asthma, COPD, bronchiectasis, or those using nebulisers and oxygen.

📖 Read the full guide online: Travel safely with a lung condition – Asthma + Lung UK

📌 Final Travel Checklist

by GAtherton

🏥 Surgery in Patients with ABPA or CPA: Can It Worsen Symptoms, and Should It Proceed?

Patients with Aspergillus-related lung diseases, such as Allergic Bronchopulmonary Aspergillosis (ABPA) and Chronic Pulmonary Aspergillosis (CPA), sometimes report worsened symptoms after undergoing surgery under general anaesthetic. While this is a recognised clinical pattern, it does not mean surgery should be avoided. Instead, it requires preparation and close perioperative management to reduce risk.

🔍 Can Surgery Worsen Aspergillosis Symptoms?

Yes — and here's why:

✳️ 1. Airway Irritation from Intubation

Endotracheal tubes can irritate airways already inflamed by ABPA or structurally altered by CPA.
Mechanical ventilation can impair mucus clearance and exacerbate cough or infection.

✳️ 2. Postoperative Immunosuppression

Surgery temporarily suppresses immune function.
Perioperative corticosteroids or stress-induced immune suppression can permit fungal flare-ups or reactivation.

✳️ 3. Impaired Mucus Clearance

Pain, immobility, and sedation reduce the patient’s ability to cough and clear secretions.
In CPA or ABPA, this can lead to plugging, fungal regrowth, or secondary bacterial infection.

✳️ 4. Drug Interactions

Azole antifungals (e.g. itraconazole, posaconazole) interact with many anaesthetics, opioids, and steroids.
These interactions can alter drug levels, reduce antifungal efficacy, or increase toxicity risk.

✳️ 5. Stress and Inflammation

Surgical stress may worsen the inflammatory or allergic component of ABPA.
CPA-related cavities may bleed or become re-infected post-op.

✅ Should Surgery Still Go Ahead?

Yes — surgery can and often should proceed when it is medically indicated.

Delaying needed procedures (e.g. for cancer, fractures, or pain relief) can lead to worse outcomes than the potential risks related to aspergillosis.

🛡️ Recommended Precautions

🔷 Pre-Operative Planning

Ensure all care teams are aware of the diagnosis.
Review lung imaging, baseline oxygenation, and current antifungal/steroid regimens.
Arrange for pre-op airway clearance if sputum is a concern.

🔷 Antifungal Management

Continue antifungal therapy through the perioperative period.
Use IV formulations if oral administration isn’t possible.
Check for drug interactions with anaesthetic or post-op medications.

🔷 Steroid Cover (ABPA and CPA on steroids)

Patients on chronic steroids may need perioperative hydrocortisone supplementation (adrenal cover).
Apply “sick day rules” or use the patient’s adrenal insufficiency plan, if applicable.

🔷 Post-Op Monitoring

Watch for:

Worsening cough, breathlessness, or sputum
Fever or signs of secondary infection
Raised IgE (in ABPA) or haemoptysis (in CPA)
Any signs of antifungal failure or drug toxicity

⚠️ When Might Surgery Be Delayed?

Consider postponing non-urgent surgery if:

There is active haemoptysis
The patient has uncontrolled inflammation or fungal burden
A recent scan shows expanding cavities or new infiltrates
Antifungal resistance is suspected or not yet managed

💬 Key Message for Patients

“Having ABPA or CPA doesn’t mean you can’t have surgery — but we do need to take extra care around your airways, your antifungal treatment, and your recovery. With the right team and planning, we can safely support you through your procedure.”

by GAtherton