Pulmonary Aspergillosis: My Journey of Dismissal, Delay and Diagnosis

I was a healthy child

I’d like to introduce myself

Basically I’m dying

Grief in a Chronic Disease Diagnosis

First we might need to define what Grief is….

Tipping Point - when for a time it all just feels like TOO MUCH

A case study example of how the little things can become big

I have written about the initial journey and diagnosis before, but it is the ongoing journey that occupies my thoughts these days.

My story regarding Asthma, Allergic bronchopulmonary aspergillosis (ABPA) then Chronic Pulmonary Aspergillosis (CPA) with Aspergilloma

I was diagnosed with ABPA with bronchiectasis in August 2021 at the age of 58, after a year of investigations. Before my first symptoms appeared, I considered myself pretty fit (lots of cycling and some walking and gym work) and my health generally good (moderate asthma well controlled on inhaled steroids and long-acting beta agonist).

First I would like to wish everyone a Happy Christmas but especially a Healthier New Year for those that are struggling.

I am writing this blog mainly to give people, many people who are suffering now with this awful disease hope.

My experience of aspergillosis starts in 1976 when I lived on a farm in Leicestershire, the farmhouse was damp, mouldy and in poor condition and the farmyard around it an absolute mess. It was a dairy farm.

Aspergillosis is not a well-known disease, whereas cancer is extremely common. What happens when you have to manage the two together? I’m writing about my experience in the hope it will help other people.

My name is John Hill. As I’m sure is the case with many people, my diagnosis with ABPA was long & confusing and from the first point of the penny dropping that something really wasn’t quite right to my current situation was full of ups and downs.

This disease is so unpredictable!

Last year I had a relatively good year finishing with a week in Llandudno where I could walk up and down the prom most days.

This year I caught Covid on Boxing Day and haven’t been well since.

Right. From the beginning, well not totally from the beginning but from before I was diagnosed with Allergic Bronchopulmonary Aspergillosis and the lead up to it and how it has affected both my family and I.

I smiled when Jill Fairweather asked us to write a few words on how aspergillosis affects us. I am sure most of us could write a novel on the effects it has had on our lives, before and after being diagnosed. I could write a novel on applying, fighting and winning my personal independence payment (PIP) allowance with this disease alone.

It took about two years to finally be diagnosed with allergic bronchopulmonary aspergillosis (ABPA) in October 2008. In that time initially in the Autumn of 2006, I had a chest/lung infection about once a month, every month.

It took almost five years for me to get the correct diagnosis.

Previously to that, I had been given medication for adult asthma, angina, chest infections, bronchitis, rheumatism and many more ‘theories.’

My journey began with a wheeze, as I was born asthmatic. I had chronic asthma as a child growing up with many asthma attacks and chest infections. I had a respiratory Consultant and Physio sessions regularly.

I’m a fifty-two-year-old woman diagnosed with the allergic form of bronchopulmonary aspergillosis (APBA) in 2016 after three or four years of symptoms and signs; then developing semi-invasive chronic pulmonary aspergillosis (CPA) in 2017.