Jacqueline’s Story

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

I was born in 1972 premature, only help then was an oxygen tent over cot in Scarsdale Hospital.  As a new born was diagnosed with Asthma and Pulmonary Fibrosis.  Mum was taught how to do mixing of powders etc to aid digestion, had an allergy to milk products.  The Hospital thought I could have Cystic Fibrosis, but only had the Pulmonary Fibrosis part.

All my life on and off I had bad spells of Asthma and was a regular patient at the old Chesterfield Royal Hospital.

The first two houses I lived in from birth had no mould or damp issues.  This changed when we moved to Hunloke Avenue in March 1980.  The chimney had been removed from the gable end of the house and the council did seal, ventilate or damp proof the job properly.  My mum’s uncle who lived next door said that we’d suffer from damp and mould problems as a result.

We lost count over the years of the damp issues and black mould on the walls of bedrooms, bathroom, kitchen, dining room.  Black mould on the windows and seals.  Problems with the outer walls, lack of pointing meant rain soaking through the walls and into the house.

We tried many approaches to improve the problem, from using tin foil on the walls before wall papering.  Painting the walls with black tar like damp proofing.  It was a losing battle.  Mum recalls me waking up with a soaking duvet from where it had touched the damp wall.  No wonder I had countless Asthma attacks as a child and growing up.

Consultants kept changing my Asthma medications to see if it was because they weren’t strong enough that I wasn’t making any improvements.

In December 2005 I got Flu which turned into Pneumonia, and countless times was put on antibiotics and prednisolone medication which only helped in the short term.

By January 2006, there were no signs of improvement, in fact was getting worse.  Constant coughing day and night, sweating on and off, grey to black or green phlegm samples.  Sometimes I had trouble producing samples, so I did physio exercises.  My weight dropped to six stone and was getting worse. Mum insisted that the Doctors refer me to a Respiratory Clinic.  I was seen by Dr. Crookes who tested me Tuberculosis with Mantoux test and had a bronchoscopy to get more scraping off lungs to test for TB.  I was given Rifater medication until the tests came back from the specialist lab.

In April before my next appointment, I collapsed and was rushed into hospital.  I was at this time that I was diagnosed with Allergic Broncho Pulmonary Aspergillosis.  I kept on having infections on/off for years, with the consultants at Chesterfield not being able to figure out why they couldn’t control the problem.  I reality it was from living in a mouldy house where the local council made excuse after excuse not to remedy the problems.

By 2013 I was rapidly going downhill again.  Mum at this time was told about The National Aspergillosis Centre which had opened in 2009 in the Manchester’s Wythenshawe University Hospital.  Mum therefore insisted that I was referred by the Chesterfield Consultants to them, as I was showing no signs of improvement.  It took from late 2013 to the end of 2014 to get a referral sent to Wythenshawe.

I started there on the 2nd March 2015.  My consultant was Professor David Denning and was also to start at the Severe Asthma Clinic with Dr. Robert Nivan.  I underwent numerous tests from MRIs, blood tests, x-rays, lung function tests and allergy testing.  The result showed that I was very allergic to different types of fungi.

The most important treatment at that time was to remove my aspergilloma, which was rendering my left lung with reduced function.  Half of my left lung was removed in August 2015 and remained in hospital for ten days.

I immediately felt an improvement in my chest and breathing post-operative.  But with our house still having issues with mould and damp, it took until 2019 to get my Aspergillosis under control with antifungal medication.

Our house was finally repointed, and the damp issues rectified in summer of 2023.  I started with Xolair injections in August 2022 to go along side my other Asthma medications – controlling my severe asthma with fungal sensitivity (SAFS).

Since being on the eight injections a month, my Asthma is stabilising.  Our house is drying out nicely inside now and have had some of the rooms recently decorated.

Things are looking up.