Good question. It’s quite rare so no one really gets it when I try to explain. Leukaemia, no problem, everyone has heard of that.
Most people have an awareness of blood cancer. But Aspergillosis- nope. I’d never heard of it before either. Trying to explain that I have one disease because I had another gets even more long winded and confusing.
P.S Can I just clarify here that I don’t volunteer this information. I don’t like to play illness top trumps (a game no one really wants to win). When people ask me what is wrong with my lungs, which they inevitably do when they see me lurching around holding my oxygen ‘handbag’, if I say ‘aspergillosis’, they have no clue. Except for one taxi driver who asked me- he used to be a farmer in Italy and had kept chickens!
This is what the British Lung Foundation have to say about Aspergillus:
‘Aspergillus is a common type of fungus (mould).
It can be found in many places including heating or air conditioning systems and rotting material such as hay or compost.
Small particles (spores) of aspergillus which float in the air can be breathed into your lungs. This normally doesn’t cause any problems as the particles are destroyed by your body’s immune system.
But if they’re inhaled by someone with a weakened immune system *this was me after my transplant* or lung condition such as asthma or cystic fibrosis it can cause a range of problems. These include chest infections caused by growth of aspergillus or symptoms related to an allergic reaction to the aspergillus.
Because this condition is rare, it may take some time to get a diagnosis. Your doctor will need to consider other possible causes of your symptoms. You may need to have a few tests and you might need to see a specialist.
You can’t catch aspergillus from another person.’
After my second transplant I had six weeks worth of strong antifungal treatment and we believed that the aspergillus bug had gone.
I was signed off by the respiratory consultant with the notion that although I’d never run a marathon, my daily life would be unaffected by a reduction in my lung capacity.
For the next 5 years, this was true. I was keen to get back to work, back to reality.
A lot happened in those 5 years. I carried the Olympic torch, I skydived for charity and I bought a house on my own.
I met my partner just as the sale was going through and he helped me with my little project hobbit house. It was built in 1901, a tiny end terrace and we decorated it together. We backpacked around Vietnam and had many other wonderful holidays. We were planning to buy a house together (mine was too small for two people) when I fell ill.
It was 5 years since my transplant. We’d just celebrated the anniversary- my friends threw me a surprise party at a restaurant in town. Life was so good.
I bought my partner Matt a Zipwire experience in Wales for his birthday. It rained the whole time but it was awesome! I did struggle to walk up some of the hills though. It was concerning. By April 2017 I was in hospital with pneumonia. There were lots of bugs in my lungs having a little bug party. The aspergillosis had been growing like a tumour and created cavities in my lungs that were ideal conditions for bugs to live. I stayed on the Cystic Fibrosis Unit for 5 weeks and I’d just come home, exhausted, when I was made redundant (the company I worked for had gone into liquidation). That was not a good week!
From then on really I’ve been struggling to breathe. I had a lot of panic attacks but I did still manage to go out on my own. I even got another job, working part time doing some admin, but I was struggling getting up the steps to the entrance.
I remember going into town shopping once and lurching from street bench to bench until I made it back to the tram. It is terrifying when you can’t get your breath. I’ve never felt so vulnerable. People just looked at me funny and no one gave me a seat on the tram. Why would they? I didn’t look ill at all and I tried my best to hide it.
January 2019 this year I went back into hospital. I lost my voice which was scary as I was on a new ward- I didn’t know the nurses and I couldn’t communicate. I needed a lot of oxygen to breathe. I came very close to shuffling off my mortal coil, but my stubborn streak wouldn’t let me tip over the edge.
I made it out of there, but I still need the oxygen. Sadly this and my reduced mobility have meant that I am no longer so independent. My mum comes every morning and helps me get ready.
I’m living my life as a breathless sloth. There’s not much I can do. Hence the blog. I’m writing a book too, and learning Spanish. I have amazing friends who pop round and occasionally take me out. Matt is great and we always go somewhere at the weekend.
I go to hospital twice a week for intravenous antifungal drugs and I look forward to seeing the people there. The staff are brilliant and of course, I know everyone there. I like to have a chat with other patients too. They’re all on different stages of their journey and I watch them get better and stop coming, or deteriorate and stop coming. I still cry a lot when someone dies.
The medication isn’t making my lungs any better, only preventing the current situation from worsening. It’s damaged my nerve endings so I have pins and needles in my feet at the moment.
This was supposed to be funny and it’s really not is it? It should be from here on in. It’s too easy to just be honest when I’m writing.
Thank you for reading!