Leslee Alexander’s Story - Road to the Correct Diagnosis

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.’

I had a Pulmonary Embolism approximately five years ago. It was quite a large one and I had blood clots on both lungs and down the side of the ribs. I was put on warfarin for six months. It took me about four months to recover but then I carried on life as before. Flying long haul too far away places for holidays with no ill effects. 
Four years ago we had decided to sell our family home and downsize to a bungalow with a very small garden. We found our ideal home and moved in.  It was a rented property as we wanted to be sure it was for us before we committed to buy.  Not long after we moved I started to become very breathless on exertion, multiple chest infections and generally felt unwell. I was very tired after doing the smallest of tasks. I was told I had adult asthma and given a couple of different inhalers. We had been there for about eighteen months when we were given notice to quit. The owners had decided to sell the property. It was January and we had booked to go to Portugal for two months to see if the milder climate would help me. My daughter told us to go and she would arrange for our furniture to be put in storage and we would move in with her on our return. I remember boarding the Ryanair flight at 7.30am on a freezing wet January morning. You had to walk out on the runway to board and my lungs felt like they were going to explode. 

After twenty four hours in Portugal, I could not believe the difference. I could walk for at least two miles or more without being breathless. I didn’t need or use my inhaler throughout the time I was there.

On return, we stayed at my daughter’s and almost immediately all the old symptoms came back. Chest pain, breathlessness, constant unproductive coughing, night sweats.
One night after climbing the stairs I started my usual coughing fit and then I felt a gurgling and an uncontrollable huge amount of blood came up. My husband phoned for an ambulance.  This was to be the start of many more of these bleeds and nobody could explain or knew what was happening. The bleeding always started at night after I had climbed the stairs and was breathless and coughing. Some were worse than others but I did have two major life threatening hemoptysis. During the first one, I was rushed into theatre and a Vena cava filter was fitted into the main aorta near to the heart.
It is like a tiny umbrella without the cloth and it is meant to trap blood clots and prevent them from reaching the lungs. I was also put on apixaban an anticoagulant, only this time it wouldn’t be for six months it would be for life. 

It was at this time that a ‘mass’ on the inside of the main pulmonary artery at the entrance to the lung was found. It was about the size of a walnut and was suppressing the flow of blood getting into my right lung.  This started a flurry of investigations, ct scans, pet scan, discussions with several respiratory consultants and one from Papworth hospital. It was concluded that the mass was an old blood clot from my very first pulmonary embolism, they could match it by looking at the ct scans I had taken twelve months previous that the Warfarin had not dissolved. It had solidified and now resembled a puma stone. Blood was seeping through it slowly and also getting passed the very narrow gap in my artery. I was told it would be far too dangerous to remove.
I now believe that this ‘mass’ was the main reason my aspergillosis went undetected for a further two years.  My future breathlessness, regular bleeds, chest pain were all attributed to this rare discovery. 

It was by chance that on one of my many admittances to a hospital, that I was treated by a consultant whom I had not seen before. He was Maltese and he said he was going to look at me with ‘fresh eyes.’  He believed that everyone was concentrating on my mass but that he was going to ignore that and delve deeper into my lungs.  Lots of blood tests, CT scan with contrast, sputum tests and eventually I was told I had ABPA and possible CPA.
I was started on voriconazole and although I was still getting bleeds I was feeling much better but I started to get side effects which included blurry vision, photosensitivity, headaches and so it was stopped. It was at this point i went to see Professor Denning.  30th December 2016. It was a 600+ mile round trip in not the best of weather conditions. I remember thinking do they not celebrate Hogmanay in Manchester.
I was started on posaconazole, prednisone reduced slowly from 30mg daily to 2mg daily.  
I am glad to say that i have not had a bleed from my lungs since i started on posaconazole, l managed to lose the four stone i had put on due to the steroids with exercise and diet.
I had four visits to Manchester in 2017 and i had a stable symptom free year. 
This year has been pretty bad with chest infections and three collapsed lung but i am turning a corner again and ready for the summer.  
I know we can never be sure of the exact source of me contracting aspergillosis.  I was 63 when i started getting the symptoms and 68 when i got a proper diagnosis. 
I used to spend a lot of time over the years gardening, in the greenhouse, looking after chickens, mixing the compost heap.  Was it any one of these that had caused it?

I came to the conclusion that it wasn’t. I am almost certain that mine started when we moved into the bungalow. Knowing what I know now I would never have dreamt of moving into it. We were surrounded by working fields.  At the back of us were huge grain silos.  When these were in use the dust and tiny corn ears in the air that would land on our car, patio set and window ledges was unbelievable. So much so that Brian phoned the environmental health on two occasions. They investigated and told us that the company would change the filters in the silos too much smaller ones. 

Because of the pulmonary embolism i had suffered, it had left scarring on my lungs and i believe all the dust coming from the silos and off the fields were sticking to the scarring. Brian had healthy lungs so it did not affect him in the slightest. 

We are also surrounded by berry fields. Blairgowrie is called the Berry Toon.

These are also a danger to people because of the pesticide they are sprayed with. 

I often walked through the strawberry fields picking strawberries so did this contribute?

We will never know for certain which one or maybe all left me with damaged lungs. 
What I do know is awareness and diagnosis of aspergillosis is now much quicker in my hospital. My respiratory consultant Mr Tom Fardon, who works with an excellent team of consultants have come on in leaps and bounds over the last five years with their knowledge of aspergillosis. Indeed some if not all are members of the Aspergillosis Trust.  I know this because two of them told me when I was last in hospital that they had read My Story on Aspergillosis awareness day this year.  
It will be a long way off until we have units like there is at NAC spread around the UK but I would hope that as awareness and knowledge is absorbed by more respiratory consultants, the need to be sent to Manchester may lessen.
I am fully confident with the treatment I am getting at my hospital now and i have seen a difference with the amount of knowledge the respiratory team have acquired. 
Hopefully the GP’s will start getting on board with this disease and begin to diagnose it sooner.