Lifestyle & Coping Archives - Page 13 of 15 - Aspergillosis Patients & Carers Support

Hazards of handing Ivy

Handling ivy (especially overgrown or decaying ivy) can potentially be bad for breathing and may exacerbate aspergillosis, especially in people with chronic lung disease, ABPA, or chronic pulmonary aspergillosis (CPA).

🧾 Why ivy can be a problem:

1. Fungal spores (Aspergillus and others)

Ivy—especially old, damp, or decaying ivy—can harbor Aspergillus and other molds on its leaves, stems, and especially in the underlying leaf litter and soil.
Disturbing ivy (e.g. cutting, pulling, or clearing) can release spores into the air, increasing your risk of inhalation.

2. Dust and bioaerosols

When ivy grows on walls or trees, there's often accumulated moldy organic matter behind or under it.
Handling it may release organic dusts, which can irritate the lungs or trigger inflammation or fungal flare-ups in sensitive individuals.

3. Environmental exposure risks

For patients with CPA, ABPA, or a weakened immune system, this kind of exposure is discouraged without protective measures.

🛡️ Recommendations if you must handle ivy:

Wear a P2 or FFP2/FFP3 respirator mask (not just a cloth or surgical mask).
Use gloves and long sleeves to reduce skin exposure.
Avoid handling it when it's damp, decaying, or moldy.
If possible, ask someone else to remove it or supervise from a distance.
Consider spraying ivy with water first to minimize dust/spore release, though this isn’t foolproof.

📌 Summary:

Handling ivy—particularly decaying or damp ivy—can expose you to airborne Aspergillus spores and worsen lung conditions like ABPA or CPA. If you have a form of aspergillosis, it’s best to avoid it entirely or use strict protection.

by GAtherton

🌱 Risks of Gardening for ABPA/CPA Patients

High fungal spore exposure: Soil, compost, leaf mould, mulch, and rotting vegetation are rich in Aspergillus fumigatus and other mold spores.
Spores can trigger ABPA flares or worsen CPA progression, especially in immunocompromised or structurally damaged lungs.
Bagged compost is particularly risky—opening bags or mixing damp materials can release a high spore load (documented in outbreaks and case reports).

✅ Benefits of Gardening

Mental health: Gardening reduces stress, anxiety, and depression, which are common in chronic lung disease.
Physical activity: Gentle exercise helps preserve lung function and general health.
Quality of life: A fulfilling hobby with strong therapeutic and social value for many.

🛡️ Risk Reduction Strategies (If Continuing Gardening)

If the patient chooses to keep gardening:

Avoid compost, mulch, and leaf mould – especially bagged compost.
Use sealed, peat-free, low-dust alternatives if composting is essential.
Wear a well-fitted FFP2 or FFP3 respirator when handling soil or dusty material.
Wet down soil before working to reduce airborne dust.
Garden in open air, not greenhouses or sheds, where spores can concentrate.
Shower and change clothes immediately after gardening.
Consider delegating high-risk tasks (e.g. compost turning) to someone else.

🧭 Summary: Risk–Benefit Decision

Patient Type	Recommendation
Stable ABPA	Can garden with precautions
CPA, mild/stable	Garden with strong precautions, avoid compost
CPA, moderate-severe or immunosuppressed	Avoid gardening unless cleared by specialist
Recent flare or hospitalization	Avoid until stabilized

Ultimately, this should be a shared decision based on:

Severity and stability of lung disease
Individual mental health benefits
Availability of safe gardening practices

by GAtherton

Living with Aspergillosis: What You Don’t See

An invisible illness that changes everything.

What is Aspergillosis?

Aspergillosis is a long-term lung condition caused by a common mould (Aspergillus) found in the environment. For most people it’s harmless, but in some it causes serious illness, lung damage, and long-lasting symptoms. It can come in different forms such as:

Chronic Pulmonary Aspergillosis (CPA)
Allergic Bronchopulmonary Aspergillosis (ABPA)
Aspergilloma (fungal ball)

These are not contagious, but they are serious.

Why It's Hard to See

People with aspergillosis may look well but feel incredibly unwell. This condition is invisible but can cause:

Constant breathlessness
Severe fatigue
Chest pain or coughing (sometimes with blood)
Frequent infections
Side effects from long-term antifungal or steroid treatments

Patients may use walkers, oxygen, or mobility aids some days and not others. That doesn’t mean they are better or faking. This is a fluctuating illness.

"But You Look Fine..."

Looks can be deceiving. People with aspergillosis are often battling infection, inflammation, medication side effects, and mental strain every day.

Please don’t assume someone is well because they don’t look ill. If they cancel plans, rest more than others, or seem tired, it’s not laziness — it’s medical reality.

How You Can Support

Listen without judgement
Believe what they tell you about how they feel
Be flexible and patient
Offer practical help (shopping, transport, etc.)
Understand their limits can change daily

Final Words

Aspergillosis is an invisible disability. Your understanding makes an enormous difference. With the right support, people with this condition can live meaningful and dignified lives.

To learn more, visit: https://aspergillosis.org https://www.aspergillosistrust.org/socialmedia

Thank you for taking the time to understand what you can’t always see.

by GAtherton

🏊‍♂️ Indoor Pools & Aspergillosis — What You Need to Know

✅ Generally Safe IF:

The pool is well-ventilated and well-maintained
Chlorination levels are monitored and stable
There's no visible mould or damp damage in the building
You are not severely immunocompromised or recovering from surgery

In stable CPA or ABPA patients who are not on high-dose immunosuppressants, light swimming in clean indoor pools can be beneficial for:

Mild exercise
Airway clearance
Improving lung capacity and mood

⚠️ Be Cautious If:

Situation	Why It Matters
You’re on high-dose steroids or immunosuppressants	Increased infection risk from fungal or bacterial spores
The pool area is damp, mouldy, or poorly ventilated	Aspergillus spores may thrive in humid corners and vents
You have ongoing lung infection or unstable aspergillosis	Exercise and exposure may worsen symptoms
You’re prone to bronchospasm or chlorine sensitivity	Chlorinated air may trigger wheezing or chest tightness

🛑 Avoid if:

The changing rooms or walls smell musty or show black mould
There is visible condensation, damp, or poor ventilation
You’ve had recent invasive infection, surgery, or hospitalisation
You have uncontrolled ABPA or CPA with frequent exacerbations

✅ Tips for Safer Swimming:

Visit during off-peak hours (less aerosolised load)
Avoid hot tubs, saunas, and steam rooms connected to the pool
Shower immediately after swimming
Wear flip-flops to reduce risk of fungal skin infections
If breathless or chesty after swimming, hold off and speak to your respiratory team

🧾 Summary:

Yes, swimming in indoor pools can be safe for many with aspergillosis, but only if the environment is clean, dry, and well-maintained — and the patient is not severely immunosuppressed or unstable. Always discuss with your specialist before starting.

by GAtherton

🛁 Outdoor Hot Tubs & Aspergillosis — The Key Issues

For someone with aspergillosis (especially chronic pulmonary aspergillosis or ABPA), **outdoor hot tubs are usually not recommended — or at the very least, should be approached with serious caution.

❗ 1. Fungal Exposure Risk (including Aspergillus):

Hot tubs — even well-maintained ones — are prone to harbouring fungal spores, biofilms, and moulds, especially in:
- Filters and jets
- Under the covers and around the edge
- The aerosolised mist from bubbles and heat
Aspergillus and other moulds can thrive in warm, damp, organic-rich environments — exactly what a hot tub is.

❗ 2. Risk of “Hot Tub Lung” (hypersensitivity pneumonitis):

Caused by inhalation of waterborne organisms, especially Mycobacterium avium and fungal spores.
Can mimic or worsen chronic lung conditions and is dangerous in someone with underlying aspergillosis.

⚠️ 3. Chlorine or Bromine May Not Be Enough:

While disinfection kills many bacteria, fungal spores and biofilm-forming organisms can persist — especially in jets or hard-to-reach areas.

🟡 If a patient insists on using a hot tub, they should:

Only use tubs maintained to hospital-grade cleanliness standards (rare in private settings)
Avoid if there's any cover of mould, visible residue, or musty smell
Use during off-peak times to reduce aerosol exposure
Avoid placing head near water jets or breathing in rising steam
Limit time in the tub and shower immediately afterward
Consider wearing a high-grade mask while near the tub when not submerged

✅ Safer Alternatives for Relaxation:

Dry saunas (if tolerated)
Warm baths indoors in clean, ventilated bathrooms
Gentle hydrotherapy pools with strict water quality controls

🔍 Summary:

For someone with aspergillosis, outdoor hot tubs are generally not recommended due to the risk of fungal aerosol exposure and potential lung flare-ups. Even “clean” tubs can harbour hidden risks.

by GAtherton

The Role of Speech & Language Therapy (SALT)

Did you know Speech and language therapists (SLTs) play a crucial role in the management of patients with respiratory conditions?

The Royal College of Speech and Language Therapists (RCSLT) comprehensive factsheet on Upper Airway Disorders (UADs), is an essential guide designed for patients managing chronic respiratory conditions such as CPA, ABPA, COPD, asthma, and bronchiectasis. This resource aims to highlight the often-overlooked possibility of co-existing upper airway disorders, which can significantly complicate the management and treatment outcomes of these chronic respiratory diseases.

Within these pages, you will find detailed insights into the symptoms, diagnostic challenges, and effective management strategies for UADs. The leaflet emphasises the critical role of Speech and Language Therapists (SLTs) in assessing and treating these disorders. SLTs are key to providing targeted interventions that can alleviate symptoms and improve daily life.

This leaflet also aims to raise awareness amongst clinicians about the importance of considering UADs in the differential diagnosis of respiratory conditions. Enhanced understanding of these disorders can lead to better patient outcomes and improved quality of life.

To access the leaflet, click here.

by Lauren Amphlett

Harnessing the Power of a Symptom Diary: A Guide to Better Health Management.

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Managing a chronic condition can be a challenging journey filled with uncertainties. However, there is a tool that can help patients take control of their condition and help them understand potential triggers and how lifestyle factors may impact their condition. This tool comes in the form of a symptom diary, a personal record that tracks information relevant to the patient, such as symptoms, ad hoc medication usage, exacerbations, food intake and activities.

Key benefits are:

Empowerment and control are at the core of why keeping a symptom diary is beneficial. It offers individuals a sense of ownership over their health, allowing them to monitor and manage their condition, rather than feeling overwhelmed by it. This proactive approach is not only beneficial for the patient's sense of well-being but also contributes to research and future planning. Documenting symptoms can help better understand the condition, aiding not just the individual but also the broader community by contributing valuable insights into chronic illness management.

Another benefit of maintaining a symptom diary is its ability to foster improved communication between patients and their medical teams. By providing a detailed account of symptoms and their impacts, a diary ensures that important information is communicated effectively, allowing for a focused discussion during appointments. This enhanced communication can lead to more informed and focused care, concentrating on what truly matters to the patient's health and well-being.

Beyond facilitating better dialogue, a symptom diary promotes self-awareness through monitoring and reflection, patients may notice patterns in their symptoms, identifying what exacerbates or alleviates their condition. This awareness is crucial in managing chronic illnesses like aspergillosis, as it empowers patients to make informed decisions about their health.

A symptom diary can also play a role in developing personalised treatment plans. Each entry can help the clinical team better understand the patient's condition, enabling in some circumstances the creation of a treatment strategy that is as unique as the individual. This tailored approach can improve health outcomes, making a difference in the patient's quality of life.

Starting a symptom diary involves a few key practices: maintaining consistency in entries, attention to detail, and regularly reviewing the diary to identify trends or changes. What to record in a diary includes the date and time of each entry, detailed symptoms, ad hoc medication usage, environmental exposures, dietary intake, physical activity, mental health, and sleep quality.

In conclusion, a symptom diary is a powerful tool in managing chronic conditions, offering benefits such as improved communication with healthcare providers, increased self-awareness, empowerment, and the facilitation of personalised treatment plans. By taking control of their health information, individuals can navigate their journey with confidence and clarity, paving the way for a better quality of life.
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by Lauren Amphlett

Patient Reflection on Research: The Bronchiectasis Exacerbation Diary

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Navigating the rollercoaster of chronic illness is a unique and often isolating experience. It is a journey that can be filled with uncertainties, regular hospital appointments, and a never-ending quest for a return to normal. This is so often the reality for individuals with chronic respiratory diseases, such as aspergillosis.

In this post, Evelyn embarks on a reflective journey, chronicling the evolution of her illness from childhood diagnosis to the present day, a timeline characterised by bilateral severe cystic bronchiectasis complicated by the colonisation of aspergillus and the less common scedosporium. For Evelyn, keeping a diary, noting symptoms, infections, and treatment strategies has been a way to make sense of the unpredictability of her health. This habit, instilled years ago by a forward-thinking consultant, transcends its practical utility, evolving into a critical tool for patient empowerment and self-advocacy.

When searching the web for help refining her symptom diary, Evelyn came across a paper titled: The Bronchiectasis Exacerbation Diary. This paper was a revelation of sorts. It cast light on often-overlooked aspects of the patient-experience and validated the often inexplicable symptoms that Evelyn experiences. It is evidence as to the power of patient-centered research and the impact of seeing lived experience acknowledged in scientific literature.

Evelyn's below reflection is a reminder of the broader implications of chronic illness on daily life and the need to adapt to navigate daily life.

As a result of a conversation with Lauren recently concerning the use of a symptom diary/journal, I came across a paper published on the internet, ‘The Bronchiectasis Exacerbation Diary’. Diagnosed in childhood with a chronic respiratory disease which has progressed throughout my life, I have bilateral severe cystic bronchiectasis with colonisation of aspergillus and the rarer fungi, scedosporium.

I have long been accustomed to keeping notes of symptoms/infections/treatment, having been encouraged to do so, many years ago, by a consultant for ease of reference at appointments. He emphasised treating infections should be dependent on the result of a sputum culture and sensitivity and not on a “Russian roulette” approach, as he called broad spectrum antibiotics; without knowing what type of infection was involved. Thankfully, my GP was co-operative, as at that time cultures were not routine. (I had dreaded acquiring a reputation as a bolshie patient!)

Reading the above mentioned paper was a revelation. It brought together the range of symptoms I experience daily, even some symptoms I felt were not appropriate to mention at clinic consultations. Moreover, I felt validated.

There have been occasions, albeit rarely, when I have doubted myself, none more so than when one clinician inferred I was psychosomatic. This was my lowest point. Thankfully, following this I was referred to a respiratory physician at Wythenshawe Hospital who, when a culture showed aspergillus, transferred me to Professor Denning’s care; as they say “every cloud has a silver lining”. Aspergillus had previously been found in a culture at another hospital in 1995/6, but not treated in the way it was at Wythenshawe.

Not only everyday symptoms were considered in the article, but also the immediate impact patients’ experience with daily living. Also, in a wider sense, the general impacts on our lives and the adjustments we all face in coping – all of which I can so easily identify with in my own life.

I felt so encouraged reading the paper as despite all of the various types of patient information leaflets I have read through the years, none were so comprehensive.

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by Lauren Amphlett

Thoughts on the Aspergillosis Journey Five Years On - November 2023

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Alison Heckler ABPA

I have written about the initial journey and diagnosis before, but the ongoing Journey occupies my thoughts these days. From a Lung/Aspergillosis/ Breathing perspective, now that we are coming into summer in New Zealand, I feel I’m doing ok, looking and feeling well.

Some of my current Medical Background:-

I started the biologic, mepolizumab (Nucala), in September 2022 after a really difficult 12 months (another story). By Christmas, I was much improved and, from a breathing and energy perspective, had a good summer; although the weather was so bad, it was hardly a summer.

I got complacent about precautions, and in early February, a grandson visited with what turned out to be a nasty flu that I then went down with. 6 weeks later, a follow-up X-ray on the lungs showed a heart issue that needed a cardiologist to check “well the aortic stenosis isn’t a big worry but the aortic duct never healed over as a child. We could repair but …..” the answer to that was “I’m over 70, had four pregnancies, I’m still here & the risk factors with all my other issues ….. not going to happen”

Once finally over those two hiccups, my 81-year-old sister was admitted to the hospital, and I was trying to advocate for her. She got Covid, which I subsequently got from her. (I had done well to stay Covid Free for 2.5 years). But yet again, any infection I get these days takes much longer to recover from; I still had it at four weeks, and at 6-8 weeks, my GP was concerned that I might have developed Long Covid as my BP and heart rate were still a bit on the high side! My sister was diagnosed with Myeloma and died within six weeks of diagnosis.

Since starting the Mepolizumab, I had noticed increasing problems with incontinence, and this developed in a full-blown Pyelonephritis (eColi Kidney Infection). As I only have one kidney, the anxiety level over this was a bit high as the symptoms were/are all very similar to when my other kidney was eventually removed. (No plan B here). Toss-up: able to breathe versus learning to deal with some incontinence?

I overlay all of 2023 with ongoing Mental Health issues with my 13-14-year-old granddaughter, so my daughter and her husband, on whose property I live, were totally preoccupied with trying to keep her safe and all the care that she requires. We are all grieving the loss of this child who is now in care.

Pain levels are high, and energy levels are very low. Prednisone has essentially killed my cortisol production, so I have Secondary Adrenal Insufficiency and Osteoporosis.

But I am Thankful

I am so grateful that I am blessed to live in a country that has a Public Health System (be it a similarly crumbling one as NHS). I was able to move to an area that has a good teaching hospital and be close to my daughter (Palliative Care physician) & her husband (Anaesthetist), I have access to free public health medications and an excellent GP who listens, looks at the whole picture and does her best to get all the Specialist to review the situation. Recent x-rays and Dexta Scan revealed the extent of the damage and deterioration of the spin: Info I need to bring to the attention of the Physio who is trying to help with my motivation/activation of strengthening exercises. Endocrinology suggested a 5mg increase in my hydrocortisone and a pushing out of the dose timing, and that has made a HUGE difference in how I cope with dealing with all that is going on and the pain. Urology has finally accepted a referral to review my kidney situation, although it still might be a few months before they see me. A recent checkup with the Physio found that the exercises had made a difference, and I was considerably stronger in my legs. I still struggle to do these, but this information informs me that I need to persist.

The Biggest Battle is Mental Attitude

Each of our stories will be unique, and for each of us, the battle is real. (When I write mine all down, it does sound a bit overwhelming, but generally, I don’t think of it in that way. I have shared my story only as an example of the complexity of the journey.)

How do we cope with all of the changes that come upon us? I knew that my health would change as I got older, but I feel like it has come upon me so rapidly. I didn’t think of myself as old, but my body is most definitely thinking and behaving that way!

Learning to:

Accept the things I cannot change,

to Work on the things I can change,

And the wisdom to know the difference

This process of letting go of dreams and hopes and setting new, more modest goals has been important. I have learned that after a more strenuous activity (by my current abilities), I have to sit down and rest or do something that allows me to rest and be productive. I have previously been somewhat of a ‘workaholic’ and not much of a planner, so this transition has not been easy. All of these changes are a Grieving Process, and like any grief, we heal better if we acknowledge it for what it is, then we can learn to live with our grief. We can move forward into all the ‘new normals’. I now have a planning diary with notes on what I want/need to do, but it is not planned out in detail as I have to “go with the flow” as it were on how much energy I have available to get things done. The reward is that I will eventually get things ticked off. If it’s only 1 or 2 daily tasks, that’s ok.

When I finally got a diagnosis in 2019, I was told that “it was not lung cancer; it was ABPA, which is chronic and incurable but could be managed”. What ‘be managed’ entailed, I most definitely did not take in at the time. Every medication that we take is going to have a side effect; antifungals and prednisone are way up there in that respect, and it is sometimes the side issues that are more difficult to cope with. Mentally, I have to remind myself that I can breathe and haven’t died of secondary pneumonia because of the meds that keep the aspergillosis under control. I am alive because I manage my intake of Hydrocortisone every day.

Weighing up the benefits versus the side effects. There are some medications that once I studied the side effects and contraindications and weighed that info against the benefits for relieving Peripheral Neuropathy, I consulted with a Dr, and we dropped it. Other medications do have to stay, and you learn to live with the irritations (rashes, dry skin, extra back pain, etc.). Again, we are each unique in what we can manage, and sometimes, it is the attitude (stubbornness) with which we approach the situation that will determine our direction.

A note on stubborn…. Last year, I set myself the goal of getting my daily average walking distance back up to 3k per day. It was a bit of a mission when some days I wasn’t reaching 1.5K. Today, I managed a 4.5 flat walk on the beach and, more importantly, saw the daily average over the past 12 months get to 3k per day. So, I celebrate a win for as long as it lasts. I make clip-on pouches for my iPhone so that I always carry it to record my steps, and I recently purchased a Smart Watch that includes recording all my health data statistics. It is a new normal to track this stuff, and the NAC research Team is wondering if such data could help us predict ABPA flares etc.

For me, my faith in the sovereignty of God is paramount in keeping me focused and moving forward.

“He knit me together in my mother's womb. My days are ordered by his hand.” Psalm 139.

I have been saved by Grace, by Christ alone.

Yes, a number of my medical conditions could/will contribute to my death; we all die at some point, but I can live the best life I can now, knowing that God still has work for me to do.

“This world is not my home. I’m just a passing through.”

Talking with others on Teams Video and reading posts or stories on Facebook Support or the website all add to helping me keep positive. (At least most of the time) Hearing other people's stories helps to put my own back into perspective … I could be worse. So, as best I can, with the Lord’s help, I hope to encourage others to keep walking on the difficult road you sometimes find yourself on. Yes, it can be very difficult at times, but look at it as a new challenge. We are not promised an easy life.
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by Lauren Amphlett

Understanding Sepsis: A Patient's Guide

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World Sepsis Day, observed on the 13th of September, united individuals and healthcare professionals worldwide in the fight against Sepsis, which accounts for at least 11 million deaths globally every year. Various healthcare institutions, including the NHS and organisations like the Sepsis Trust, actively participated in spreading awareness about Sepsis, its early signs, and the importance of timely medical intervention.

Facts about Sepsis from the World Sepsis Day Website

CASES & DEATHS

47 to 50 million sepsis cases per year
At least 11 million deaths per year
1 in 5 deaths worldwide is associated with Sepsis
40% of cases are children under 5

SEPSIS IS THE NUMBER ONE…

…cause of death in hospitals
…of hospital readmissions
…healthcare cost

SOURCES OF SEPSIS

Sepsis is always caused by an infection – like pneumonia or diarrheal illness
80% of sepsis cases occur outside of a hospital
Up to 50% of sepsis survivors suffer from long-term physical and/or psychological effects

Understanding Sepsis

Sepsis occurs when the body's response to an infection results in damage to its own organs. If left untreated, Sepsis can lead to septic shock, a critical and often fatal condition.

Recognising the Symptoms: The symptoms of Sepsis can be remembered with the acronym 'SEPSIS':

S: Slurred speech or confusion
E: Extreme shivering or muscle pain
P: Passing no urine (in a day)
S: Severe breathlessness
I: It feels like you're going to die
S: Skin mottled or discoloured

If you or someone else is experiencing any of these symptoms, seeking medical attention is crucial.

Early Intervention is Key

Early recognition and treatment of Sepsis can significantly improve the chances of recovery. If you suspect Sepsis, it's crucial to get to the nearest NHS hospital or contact your GP immediately. The NHS is equipped to provide rapid assessment and treatment for Sepsis, which may include antibiotics and other supportive measures.

Preventing Infections

Preventing infections can reduce the risk of developing Sepsis. Ensure to:

Keep vaccinations up to date
Practice good hygiene, like handwashing
Seek prompt medical attention for infections

Sepsis is a medical emergency that requires immediate attention. Understanding the signs and seeking prompt medical care can significantly improve outcomes. The NHS provides comprehensive care for sepsis patients, and it's crucial to utilise these resources if you suspect you or a loved one may be suffering from Sepsis. Through awareness and education, especially on platforms like World Sepsis Day, we can work together to reduce the impact of Sepsis and save lives.

For more information on Sepsis, you can visit:

Symptoms of Sepsis - NHS