Why Join an Online Support Group if You Have Aspergillosis?
You are not alone with aspergillosis
Join a friendly online support meeting — no pressure, just listen if you prefer.
Many patients find that even attending once helps them feel more reassured, informed, and supported.
Why Join an Online Support Group if You Have Aspergillosis?
Living with aspergillosis can feel isolating. Many people go for years without meeting another person with the same condition. Family and friends may be supportive, but they may not fully understand what it is like to live with breathlessness, fatigue, treatment side effects, uncertainty, or repeated hospital visits.
That is one reason online support groups can be so valuable. They bring people together who understand, often immediately, many of the challenges that aspergillosis can bring.
Key points
- Online support groups reduce isolation and help patients feel understood
- They offer shared experience alongside emotional support
- They improve confidence and understanding of the condition
- They help patients feel better prepared for appointments
- They are flexible — you can simply listen if you prefer
What changes when people join a support group?
Before joining
- Feeling alone with the condition
- Uncertainty about symptoms
- Limited practical advice
- Low confidence at appointments
- Worry about the future
After joining
- Connection with others who understand
- Better understanding of the condition
- Practical day-to-day coping ideas
- More confidence asking questions
- Feeling more supported and reassured
Why aspergillosis can feel so isolating
Aspergillosis is a relatively rare condition, and many patients never meet someone else with the same diagnosis. Online support groups help bridge that gap by creating a shared space for understanding and connection.
1. You realise you are not alone
Hearing others describe similar symptoms and challenges can be immediately reassuring and reduce feelings of isolation.
2. Shared experience can be deeply reassuring
Support groups provide practical, real-world insight into managing fatigue, pacing, work, and daily life.
3. You may understand your condition better
Listening to others and accessing shared resources helps build confidence and understanding.
4. It can help you feel more confident at appointments
Patients often feel better prepared and more able to ask the right questions.
5. Emotional support matters too
These groups provide encouragement, understanding, and a sense of belonging.
What happens in a typical online support session?
- Friendly welcome — no pressure to speak
- Open discussion — share or listen
- Optional topics — such as fatigue or treatment experiences
- Flexible participation — camera and microphone optional
- Safe, moderated space
Many people attend their first session just to listen — and that is completely fine.
What patients often say
“I wish I had joined sooner. Just hearing others talk made a huge difference.”
“I didn’t speak in my first meeting, but it really helped just listening.”
“It helped me understand my condition and feel more confident.”
Thinking of joining?
You can attend once, listen, and decide if it feels helpful. There is no obligation to continue.
View meeting times and book here:
https://aspergillosis.org/support-meetings/
Meetings are held online using Microsoft Teams. You will receive a joining link after booking.
Bottom line
Online support groups offer connection, reassurance, and understanding. They cannot replace medical care, but they can make living with aspergillosis feel more manageable and less lonely.
Please note: These groups are for support and shared experience. They do not replace advice from your own doctor or specialist team.
Donating Your Body for Medical Research in the UK
This is an uncommon request, but it can be very helpful to researchers. There is no compulsion at all to consider body donation. It is entirely a personal choice. Many people will decide that it is not for them, and that is completely understandable. For those who do wish to explore it, however, body donation can make an important contribution to medical education, training, and research.
What does body donation mean?
In the UK, donating your body means leaving it after death to a medical school or other appropriately licensed institution for anatomical examination, education, training, or research.
You cannot usually donate your body specifically to “aspergillosis research” alone. However, donation may still support work that is highly relevant to people affected by aspergillosis, including:
- lung disease
- infection
- immune responses
- medical training in complex respiratory illness
The most important point: consent must be given in advance
Under UK law, body donation must be arranged before death. This means:
- you must give written consent
- the consent must usually be witnessed
- your family cannot normally make this decision for you after you die
How to arrange body donation
- Choose a medical school
You need to contact a medical school directly. Most only accept donations from their local area. - Request an information pack
The school will explain its process, send consent forms, and set out any restrictions. - Complete the consent forms
Keep copies with your important papers and let your family know your wishes. - Tell your next of kin or executor
They will usually need to contact the medical school promptly after death.
Important to understand
- Not every donation can be accepted. Even if you have registered, a medical school may not be able to accept the body in every circumstance.
- A backup funeral plan is important.
- Body donation is separate from organ donation. They are different systems and require separate arrangements.
Can I ask for donation to help lung or aspergillosis-related research?
You can certainly explain that your interest is in supporting research and education relevant to lung disease, infection, or aspergillosis. However, you cannot usually guarantee exactly how a donated body will be used. Even so, donation may still support education and research that benefits future patients with complex respiratory and fungal conditions.
Where to start: Human Tissue Authority
The best first step is the Human Tissue Authority (HTA), which provides UK guidance and a way to identify the correct medical school for your postcode.
Examples of medical school body donation pages
Please note: contact details and catchment arrangements can change, so it is wise to confirm current information directly on each medical school’s website.
- University of Manchester
Body donation / bequeathals information - University of Liverpool
Human Anatomy Resource Centre body donation page
Email: [email protected]
Tel: 0151 794 5442 - University of Leeds
Bequests information
Email: [email protected]
Tel: 0113 343 4297
Final thought
Donating your body for medical education or research is an unusual and deeply personal decision. There is absolutely no obligation to consider it. But for those who do, it can be a generous and lasting way to support future learning, better care, and research that may help people living with serious conditions, including aspergillosis.
Last reviewed: March 2026
Why Aspergillosis Is So Hard to Diagnose
Last reviewed: 18 March 2026
Key points
- Aspergillosis is often difficult to diagnose because its symptoms can look very similar to those of more common conditions.
- Diagnosis usually depends on several pieces of evidence being brought together, rather than one simple test.
- Doctors are trained to consider common conditions first, because this is usually the safest and most efficient approach.
- This approach works well for many patients, but it can delay recognition of conditions such as aspergillosis.
- Delays are often caused by the way healthcare systems are organised, not by lack of care or effort from individual clinicians.
- Patients can help by keeping a clear record of symptoms, tests, treatments, and how things have changed over time.
Why diagnosis can be difficult
Aspergillosis is not a single illness but a group of conditions caused by Aspergillus, a mould commonly found in the environment. These include:
- Allergic bronchopulmonary aspergillosis (ABPA)
- Chronic pulmonary aspergillosis (CPA)
- Other airway and colonisation-related conditions
Diagnosis usually depends on combining:
- symptoms over time
- CT scan findings
- blood tests (including immunological tests)
- sputum microbiology
- clinical history
There is rarely a single “yes or no” test, which is why diagnosis can take time.
What the patient journey often looks like
Early symptoms
Symptoms such as cough, breathlessness, fatigue, or sputum are common across many conditions including bronchiectasis, asthma, and infection.
Treatment for common conditions
Initial treatment often includes antibiotics, inhalers, or steroids. These are appropriate first steps based on clinical guidelines such as those from the British Thoracic Society (BTS).
Ongoing symptoms
When symptoms persist or return, further investigation is usually needed.
The turning point
At some stage, fungal disease may be considered and tests for Aspergillus are performed.
Why doctors tackle common conditions first
Why do doctors start with common conditions?
Doctors treat common diseases first, prioritizing efficiency, patient safety, and high-probability outcomes. This approach, considering the most likely diagnosis first, helps manage patient health efficiently and effecctively before investigating rare or complex conditions.
This approach is safe and effective for most people, but conditions like aspergillosis can sit outside these usual pathways.
Where delays can happen
Overlap of symptoms
Symptoms overlap with many conditions, including tuberculosis and lung cancer.
No single definitive test
Diagnosis often requires combining multiple test results rather than relying on one.
Gradual disease progression
Conditions such as CPA may evolve over months or years.
Multiple conditions
Patients may have more than one lung condition at the same time.
Why this is often about the system, not the individual doctor
Healthcare systems are designed to manage large numbers of patients efficiently and safely. This means prioritising common conditions first.
However, aspergillosis often requires specialist input. In the UK, this may include referral to the National Aspergillosis Centre, which provides expert assessment and management.
International guidance from organisations such as ESCMID (European Society of Clinical Microbiology and Infectious Diseases) also highlights the complexity of fungal diseases.
What patients can do
- Keep a record of symptoms and treatments
- Ask when diagnosis should be reviewed
- Discuss whether further tests are needed
- Use trusted information sources such as our diagnosis guide
A more balanced way to think about delay
Diagnosis is often not a single event but a process that unfolds over time.
The goal is to recognise patterns earlier and ensure patients who need specialist input are identified sooner.
Common questions
Why was I treated for other conditions first?
Because those conditions are more common and more likely.
Should I ask about aspergillosis?
Yes, especially if symptoms are persistent or unusual—but it should be part of a broader discussion.
When to seek medical advice
- Persistent or worsening symptoms
- Coughing up blood
- Unexplained weight loss
References and further reading
When Symptoms Are Real but Answers Are Not: Understanding Uncertainty
Last reviewed: 18 March 2026
Key points
- Many people experience a period where symptoms are real but no clear diagnosis has been made.
- This can sometimes feel like being told “nothing is wrong” or “it is all in your head”.
- In most cases, this reflects uncertainty in the system, not disbelief from clinicians.
- Conditions such as aspergillosis can take time to become recognisable.
- Physical and psychological factors can overlap—but unexplained symptoms are still real symptoms.
- Clear communication and ongoing review are key to moving forward.
The experience many patients describe
During a long diagnostic journey, many people reach a point where they hear phrases such as:
- “Your tests are normal”
- “We can’t find anything serious”
- “It may be stress or anxiety contributing”
Even when these words are carefully chosen, they can feel like:
“Nothing is wrong” or “it’s all in my head”
This can be one of the most difficult parts of the journey—especially when symptoms are ongoing, disruptive, and clearly real.
Why this happens
This situation usually reflects the limits of current medical systems rather than a lack of concern.
Tests do not always give clear answers
Modern medicine relies heavily on tests. But for many conditions—including chronic pulmonary aspergillosis (CPA)—tests may:
- be negative early on
- show unclear or borderline results
- require interpretation over time
This creates a gap between:
- what the patient is experiencing
- what can currently be measured
Medicine is designed to provide answers
Clinicians are trained to explain symptoms and reassure patients. When no clear diagnosis is available, they may turn to explanations such as:
- stress
- anxiety
- functional symptoms
These are real and valid factors—but if introduced too early, they can feel like the search has stopped.
Time pressure
Short consultations can mean:
- less time to explain uncertainty
- less opportunity to validate patient experience
- simplified explanations that lose nuance
What doctors mean vs what patients hear
Often, the issue is not what is said—but how it is understood.
| What may be said | What may be heard |
|---|---|
| “Your tests are normal” | “Nothing is wrong” |
| “We haven’t found a cause yet” | “There is no cause” |
| “Stress may be contributing” | “It’s all in your head” |
Understanding this gap can help both patients and clinicians move forward more constructively.
A critical clarification
Not having a diagnosis is not the same as not having a disease.
Unexplained symptoms are still real symptoms.
Medicine does not always have immediate answers—especially for conditions that develop slowly or do not fit standard patterns.
Physical and psychological overlap
It is important to take a balanced view.
- Physical illness can lead to anxiety, fatigue, and distress
- Anxiety can worsen physical symptoms such as breathlessness
This relationship is two-way, not either/or.
The problem arises when psychological explanations replace further investigation, rather than sitting alongside it.
Why this matters in aspergillosis
Conditions such as aspergillosis often:
- develop gradually
- have non-specific symptoms
- require multiple tests over time
This makes periods of uncertainty more likely, particularly before a diagnosis such as allergic bronchopulmonary aspergillosis (ABPA) or CPA is confirmed.
You can read more about this in Why Aspergillosis Is So Hard to Diagnose.
What patients can do
- Keep a record of symptoms and how they change over time
- Ask what the current working diagnosis is
- Ask when the situation should be reviewed
- Share concerns clearly, but remain open to different explanations
Helpful questions include:
- “What else could this be?”
- “What would make you reconsider the diagnosis?”
- “When should we review this again?”
A shared understanding
This situation is not about:
- patients being dismissed
- clinicians not caring
It reflects a deeper reality:
Medicine does not always have immediate answers—especially for complex or evolving conditions.
The goal is to keep the process open, respectful, and moving forward.
Common questions
Does this mean doctors think I’m imagining symptoms?
No. It usually reflects uncertainty rather than disbelief.
Can stress really affect physical symptoms?
Yes—but this should not stop appropriate medical investigation.
What should I do if I feel dismissed?
Ask for clarification, a review plan, or a second opinion if needed.
How to Ask Fewer, Better Questions in Appointments
Focusing on what matters most to you—without feeling you’re wasting time
Many patients and carers worry about “asking too much” in clinic. Appointments are short, clinicians are busy, and you may already have a long list of questions in your head. The aim isn’t to stop asking questions—it’s to ask the right ones, at the right time, in the right way.
Here are practical strategies that help you stay focused, feel heard, and make the most of limited time.
1. Decide your Top 3 priorities before you go
Before the appointment, write down everything you’re thinking about. Then circle just three things that matter most right now.
Good priorities are usually:
-
A symptom that is new, worsening, or frightening
-
A treatment issue that affects daily life (side-effects, adherence, cost, function)
-
A decision you need to make soon
If it doesn’t change what happens in the next few weeks, it may not need airtime today.
If you remember only one thing: appointments are for decisions, not encyclopaedias.
2. Separate “need to know” from “nice to know”
It’s easy to mix curiosity with urgency.
Need to know (ask now):
-
Is this symptom important?
-
Is this treatment still right for me?
-
What should I do if X happens?
-
Are we monitoring the right things?
Nice to know (park for later):
-
Mechanisms, pathways, emerging research
-
Rare side-effects without symptoms
-
“What if” scenarios far in the future
Keep a “parking list” for later reading or discussion.
3. Frame questions around impact, not theory
Clinicians work best when questions are grounded in real life.
Instead of:
-
“I read a paper saying X might affect Y…”
Try:
-
“I’m noticing X in daily life—does that change what we do?”
-
“Is this symptom something you’d want to investigate?”
This signals relevance and helps clinicians triage quickly.
4. Ask one question at a time
Long, multi-part questions feel overwhelming and are easy to partially answer.
Break them down:
-
First: Is this important?
-
Then (if yes): What do we do about it?
-
Then (if needed): What should I watch for?
You’ll often find later questions become unnecessary once the first is answered.
5. Use the “Is this something we should…” test
This single phrase keeps questions concise and respectful of time:
-
“Is this something we should investigate?”
-
“Is this something that changes treatment?”
-
“Is this something I should worry about?”
A clear yes/no (or not yet) is often all you need.
6. Accept that not everything fits in one appointment
It’s okay—and normal—to say:
-
“I know we may not have time today—what should I prioritise?”
-
“Which of these matters most from your point of view?”
This shows partnership, not passivity.
If something needs more time, ask how best to handle it:
-
Another appointment
-
A nurse specialist
-
Written advice
-
Monitoring and review later
7. Bring written notes (but don’t read them all out)
A short list helps you stay focused under pressure.
Tip:
-
Highlight your top 3
-
Tick them off as they’re addressed
-
If time runs out, you still covered what mattered most
8. For carers: ask on behalf, not over
Carers often worry about dominating the conversation.
Helpful approaches:
-
Ask the patient first: “What do you most want answered today?”
-
Step in only if something important is being missed
-
Offer to follow up questions outside the appointment if possible
9. Reassure yourself: clinicians don’t expect perfection
You are not expected to:
-
Understand everything
-
Ask the “right” questions every time
-
Cover your entire condition in one visit
Good clinicians prefer:
a focused conversation
over
a rushed, overloaded one
10. A simple closing question that saves time
If time is tight, end with:
-
“Is there anything you think I should have asked but didn’t?”
This often surfaces the most important point of all.
The takeaway
You are not wasting time by asking questions—you’re wasting time by asking too many unfocused ones.
Clarity, prioritisation, and relevance help everyone:
-
You leave with answers that matter
-
Clinicians can make better decisions
-
Anxiety is reduced, not fuelled
When Caring for a Loved One Becomes Overwhelming: A Guide for Family Carers
Caring for a spouse, parent, or child is one of the most loving things you can do — but it can also be one of the hardest. Many family carers feel torn: wanting to give the very best care, yet struggling with exhaustion, isolation, and the feeling that “no one else can do it as well as me.”
This guide brings together insights to help you recognise when caring is becoming too heavy, why it feels so difficult to let go, and how to build a sustainable balance that protects both you and the person you love.
Why caring feels so demanding with family
-
Loss of independence: Illness often leaves people feeling powerless. Demanding behaviour can be a way of trying to regain control.
-
Role reversal stress: When a child becomes a parent’s carer, or a spouse becomes more like a nurse, both sides can feel uncomfortable.
-
Emotional safety: Patients often hold back with professionals but show raw feelings at home. That can come across as extra demanding.
-
Blurred boundaries: With family, it’s harder to say “no.” A patient may expect more than they ever would from an outsider.
When the caring role becomes unreasonable
Caring is no longer sustainable when:
-
Your health breaks down from exhaustion or stress.
-
You are completely isolated, with no time for friends, rest, or hobbies.
-
The caree’s demands exceed real need, and everything revolves around them.
-
Boundaries disappear and you can’t say no without conflict.
-
You are the only source of support, with no outside help.
These are warning signs that it’s time to rebalance the situation.
Why it doesn’t mean “defeat”
Asking for help can feel like admitting failure — but it isn’t.
-
Caring is a marathon, not a sprint. Protecting your health means you can keep caring longer.
-
Strength means knowing your limits. Bringing in help shows foresight, not weakness.
-
Love isn’t replaced. Professional carers can take tasks off your hands, but your relationship and bond remain uniquely yours.
Think of it not as “stepping back” but as building a care team. You remain the anchor, but you don’t carry everything alone.
Why it’s hard to let others help
Many carers say: “They don’t do it as well as I do.” This is natural — you know your loved one’s habits and needs better than anyone. Professionals may work differently, and that can feel uncomfortable.
But:
-
Different doesn’t always mean worse — just not “your way.”
-
Perfection isn’t sustainable if it destroys your health.
-
Your role as spouse/child/friend is irreplaceable — letting others handle routine care may free you to keep that role.
Start small: allow someone else to take over one task or cover for a short period. Gradually, trust can build.
Can problems be predicted?
Yes — carers often see the signs early:
-
Constant exhaustion or resentment
-
Dropping their own health needs or appointments
-
Losing touch with friends and community
-
Feeling guilty if they take any time for themselves
If these signs appear, it’s time to bring in extra support before crisis strikes.
Practical steps to make caring sustainable
-
Have early, honest conversations about what you can and cannot do.
-
Ask for a Carer’s Assessment (in the UK) — this can open up respite care, day services, and financial support.
-
Bring in professional support early so it feels like teamwork, not abandonment.
-
Protect your own time — even short, regular breaks keep you healthier.
-
Seek peer support — carers’ groups and counselling reduce isolation.
Final thought
Caring is an act of deep love. But love alone cannot carry the whole weight forever. Sharing the load is not defeat — it is the wisest way to ensure that both you and your loved one remain safe, cared for, and connected.
You are not failing. You are leading a team, protecting your own well-being, and preserving the relationship that matters most.
🧾 Getting a Second Opinion for Aspergillosis: What If Your Hospital Refuses?
Many patients living with aspergillosis or allergic bronchopulmonary aspergillosis (ABPA) ask for a second opinion — often from a national centre like the National Aspergillosis Centre (NAC) in Manchester or from another specialist elsewhere in the UK. But sometimes, hospitals resist sending your case outside their own department.
Here’s what’s happening, why it might occur, and what you can do.
🤔 Why Would a Hospital Refuse an Outside Opinion?
It’s understandably frustrating when you’ve asked for expert help and your local hospital insists on keeping things “in-house.” Here are some reasons this might happen:
1. Internal Referral Rules
Hospitals sometimes have a policy to refer to another consultant within their own department first. They may consider this a “second opinion,” even if it’s not truly independent.
2. Cost and Complexity
Referrals to another NHS trust — especially across health boards or into England (e.g. to NAC) — can involve extra steps and costs. Some hospitals prefer to avoid that unless they feel there’s no choice.
3. Professional Sensitivities
Some doctors may feel a national second opinion implies criticism of their care, even if your request is made respectfully.
4. Lack of Awareness
Some clinicians aren’t fully aware of what the National Aspergillosis Centre offers — or may underestimate how complex aspergillosis, ABPA, or recurrent fungal infections can be.
🧑⚕️ But Isn’t a Specialist Opinion My Right as an NHS Patient?
Yes. If your GP or hospital team believes it’s clinically appropriate, you have the right to be referred to another NHS consultant — including one outside your local area.
The NAC is nationally commissioned by NHS England to provide care for people with chronic aspergillosis. They accept referrals from across the UK.
💷 Why Private Care Might Not Be an Option
Some patients consider going private when local NHS referrals are blocked — but private care often means:
-
Paying for new scans, blood tests, and sputum cultures
-
No direct access to previous NHS records
-
Higher costs than expected, especially for complex tests
If you can’t afford this, you are not alone, and there are still NHS options available.
🧭 What You Can Do Next
Here are practical steps if you're being blocked from getting a second opinion:
✅ 1. Restate Your Request Clearly
Ask your GP (or write yourself) to reply to the hospital and explain:
-
You are specifically asking for an opinion from a national expert service (e.g. NAC or Dr Iain Page in Edinburgh).
-
This is not a rejection of their care, but a request for specialist reassurance, diagnosis support, or treatment planning.
✅ 2. Ask for a Tertiary Centre Referral
Use the term “tertiary referral” — this means a referral to a national or highly specialised NHS service.
✅ 3. Raise It with PALS
If you're still being blocked, contact your local Patient Advice and Liaison Service (PALS) or NHS complaints team. Explain:
-
You have a rare/complex condition,
-
You’ve asked for a national review,
-
And you’ve been offered only an internal opinion.
✅ 4. Get support on NAC Support Facebook Group
- https://www.facebook.com/groups/aspergillussupport/
💬 In Summary
-
You’re not being difficult — you’re advocating for your health.
-
It is reasonable and often necessary to seek input from specialists like those at the NAC.
-
If you’ve been told “no,” it may be due to policies or misunderstandings — not a reflection on your need for better care.
-
Keep asking, and if needed, involve your GP, or PALS.
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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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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The Benefits of Peer Support
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Living with chronic and rare conditions such as chronic pulmonary aspergillosis (CPA) and allergic bronchopulmonary aspergillosis (ABPA) can be a daunting experience. The symptoms of these conditions can be severe and have a significant impact on a person's daily life. The journey can be lonely and isolating, and it's common to feel like no one understands what you're going through. This is where peer support can be incredibly valuable.
Peer support is a way for people with a shared experience to connect and share their stories, advice, and coping strategies. It can be offered in various forms, including online support groups, peer mentoring programs, and in-person support groups. It allows people to feel understood, validated, and supported in a way that other forms of support cannot offer.
At the National Aspergillosis Centre (NAC), we understand the importance of peer support for people living with aspergillosis. While we offer advice and guidance on how to manage your condition, we recognise that much of the support comes from those with a lived experience of the condition.
Our virtual patient and carer support meetings are an excellent example of peer support in action. These meetings are hosted on Microsoft Teams twice a week and are open to everyone, not just those who are patients of NAC. These meetings provide a safe and supportive space for people to connect with others who understand what they're going through. They allow people to share their experiences, ask questions, and learn from others who have lived with the condition for a longer period.
Through these meetings, patients gain insight into coping mechanisms and strategies that help others live as normal a life as possible with their condition. We have seen many of our patients build lasting friendships with people who understand what they're going through.
So, if you are living with any type of aspergillosis, our peer support channels can be a valuable resource. Connecting with others who share your experience can provide benefits that are difficult to achieve through other forms of support. Our virtual patient and carer support meetings are an excellent place to start, and we encourage you to join us and see the benefits of peer support for yourself.
You can find out the details and sign up for our meetings by clicking here.
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