My Story

I was a healthy child. I suffered the usual colds, snotty nose and sore throats that I probably picked up in school. I had my tonsils removed when I was 6, a traumatic event that I still remember to this day but the abundance of as much ice cream as I wanted is remembered fondly along with the story book Peter Rabbit that my Nana bought me to keep me occupied in the hospital. After this I didn’t enter a hospital again as a patient until I was 26.

I think my story with respiratory illnesses starts in December 1996 when I was 26 and 32 weeks pregnant with my first child. I was found at home collapsed and the last thing I remember was that I was struggling to breath. I had suffered a pulmonary embolism caused by the blockage of an artery in my lung. I remained in hospital for 5 weeks on heparin to thin my blood. My baby was born at 35 weeks and although the circumstances were difficult as they had to take me off the blood thinning medication 12 hours before they induced me and then my Dr wanted me back on it within 12 hours, thus giving me a 24 hour window to have my baby, he was born a very healthy 7ib and still remains my biggest achievement to date. Once I was allowed home my medication was changed to warfarin and I remained on that for another 8 weeks. I remember the time I came out of hospital as the most wonderful time of my life, I think I was just so grateful that both me and my baby were alive and well. I remember the love from my family and friends as they felt the relief too and it just felt like a special time. Unfortunately 5 months later I suffered another pulmonary embolism and was forced to spend another 2 weeks in the hospital. This time without my baby as he wasn’t allowed in, that was a very sad time for me. My Dad used to tape him laughing and bring me the tapes in to listen to. Strange times. Once again I found myself on warfarin for another 3 months which meant regular trips to the hospital.

Over the course of the following 18 months I started suffering from regular chest infections that required antibiotics. They tested my sputum and it came back positive for the bacteria pseudomonas and haemophilus influenzae. I was referred to the respiratory unit at my local hosptial in 1998 where, after various tests they diagnosed me with bronchiectasis. The treatment at the time was rolling antibiotics. 3 different types that I was permanently on and simply rotated from week to week. I was still suffering from recurrent chest infections and found myself in and out of the hospital on a fairly regular basis. In 2001 a specialist decided that my bronchiectasis was localised and that we should remove the poorly bit of my lung. In July 2001 I had a partial lobectomy of my left lung. Hallelujah! I was cured, or at least I seemed to be. Over the following few years I suffered pregnancy complications, I had 3 ectopic pregnancies that eventually caused me to lose both my fallopian tubes. I remember the doctors were concerned about using anesthetics because of my previous medical history but unfortunately for me one of my fallopian tubes ruptured and I was suffering from a massive internal bleed so they had no option other than to take me to surgery. In addition to this I was suffering superficial pain from the wound site to remove my lung. I was taking very strong pain medication that seriously impacted on my quality of life and my ability to do my job. In 2002 I just decided to stop taking everything! I was fed up of being in a thick fog. I now manage the pain in my own way, with a combination of relaxation techniques and the occasional slow release pain medication.

By the time my son was 7 I had started to suffer from chest infections again. I often felt unwell and was tired all the time. I reduced my working week from 5 days to 4 to help with the fatigue and maybe have some energy left for my family. At some point around this time, I ended up back in hospital and this time I was diagnosed with pneumonia. Once again they identified hemophilus influenzae in my sputum (between you and me it is colonised now and is very happy living in my lungs) and I was told the bronchiectasis was back. This time in both lungs. I was devastated.

The next 7 years passed in a blur of ill health, regular courses of antibiotics, regular stays in hospital but never really getting better. By 2011 I was working 12 hours a week spread out over 3 days and at times even that felt too much. I was missing important family events and my husband and I had simply stopped planning things. We just never knew if I’d be well enough to do it. All holidays and events were booked last minute. It was how we had to live. I think I was at the lowest point I’ve ever been mentally and I started seeing a councillor to help with my thoughts. He recommended I use the internet to search for support groups and speak to other people who might be suffering like me. This was 2011 and social media wasn’t what it is today. I found a support group on line for bronchiectasis patients so I joined. My first contact was the groups administrator and the first thing he said to me was that it was very important that I had the right specialist. He pointed me to a consultant database so I completed it saying I was prepared to travel up to 100 miles. It came back with about 100 consultants and mine wasn’t even on the list! I asked my GP to refer me to the guy who was at the top of the list. Professor Denning at Wythenshawe hospital in Manchester.

4 weeks later I met Professor Denning or David as he introduced himself to me and my life changed overnight. The first thing he did was send me for an x-ray, then he set about understanding my family history. I had many tests to rule things out, PCD, CF and asthma. Then he set about looking at my immune system and of course he ran all the tests for aspergillosis. 4 weeks after first meeting him, he told me I had non cystic fibrosis bronchiectasis, aspergillus bronchitis and a mannose binding lectin deficiency (in fact I don’t have any MBL at all). He started treatment with antifungals and a daily macrolide antibiotic called azithromycin. Within weeks I started to feel more like myself. My cough had subsided, my breathing improved and I felt more energised. I was 40 years old. How had it taken this long to identify what was wrong with me and what the blooming heck was Aspergillus!

I realised that I had been part of the problem, why had a not sought better care? Why had I just let the doctors continue to treat me without there ever being signs of prolonged improvement. It’s how I had been brought up, we don’t question we simply trust and follow. Especially doctors and people who know more than us, but do they? Doesn’t our experience make us qualified? Isn’t it important to understand the nuances of our lives in order to help make us better? If the treatment isn’t working shouldn’t we all be asking, WHY?

I tried to find out as much as I could about aspergillus bronchitis but back in 2011 I couldn’t find a single thing! The bronchiectasis support group understood little things and Professor Denning and the wonderful respiratory nurses were always on hand to help but educating myself was difficult.

I stopped going to my local consultant for bronchiectasis and was lucky that when they created a bronchiectasis unit in Manchester alongside the aspergillosis unit I was referred there for care. The team are wonderful and my consultant Dr Heather Green has been amazing.

Since 2011, I have been in hospital a total of 3 times and one of those was planned as I now have to have occasional IV antibiotics and whilst I can have these in the community, Dr Green felt I could do with the rest. She, of course, was correct. The approach to my care now is very different, decisions are discussed and made as a team, any changes to my medication are very well thought out and nothing is done without my opinion being taken into consideration.

In 2020 I found the Aspergillosis Support Group on Facebook. In 2021, Jill Fairweather asked me if I would be a trustee for a new charity that they were trying to create. I agreed. In 2023 I took over from the existing chair, John Hill, when he resigned due to health issues. Some days it’s hard, we are only a team of 4 now and trying to advocate for patients all over the world. We are patients ourselves and dealing with fatique, infections and other complications, but we are committed. My vision is that everyone around the world who has a respiratory condition knows what aspergillosis is. Every GP and HCP knows what aspergillosis is but not only that, that they THINK FUNGUS when current treatment isn’t working. Not 10 years later but weeks/months later.

My son who started this adventure with me is all grown up now with a child of his own. Next April he will be running the London Landmarks Half Marathon with his girlfriend to raise money for the Aspergillosis Trust and of course help us raise awareness. I couldn’t be prouder!