Aspergillosis Trust (AT) Key Messages for Media Enquiries
We keep hearing similar stories. So AT feel it is important to get these key messages across to prescribers, mainly GPs and asthma nurses in the frontline, who see patients first
- Patients find it can take years to get a diagnosis of aspergillosis
- All of us potentially at risk until we know enough about the process of infection to say differently
- Aspergillosis is incurable and affects about 400,000 patients in the UK alone (1 in 160).
If patients are having asthma flare-ups despite using inhalers correctly, think of fungal lung infections. Aspergillosis can present as uncontrolled asthma.
If repeated attempts at treating lung infections with antibiotics fail, then think of fungal lung infections sooner. This will help to reduce unnecessary exposure to antibiotics. Therefore helping to limit antimicrobial resistance by implementing antimicrobial stewardship programmes (appropriate use of antibiotics, antifungals etc).
Aspergillosis is a ‘hidden’ lung condition, so it often gets missed. Patients appear ‘healthy’ even when really ill. Aspergillosis in all its forms is seriously disabling and life-changing. So refer to a specialist centre for expert guidance in managing aspergillosis.
AT would also like to convey these points too if possible:
- Using diagnostics i.e. point of care tests (POCT) will help to detect fungal infections earlier and initiate correct treatment, also avoiding unnecessary exposure to antibiotics.
- Monitoring antifungal levels
helpsprevent resistancedeveloping. Avoiding and managing any interactions with patients other medications will also help maintain therapeutic levels of antifungals. See www.aspergillus.org.uk/content/antifungal-drug-interactions for patient version and healthcare professional version.
Specialist Centres in the UK
- National Aspergillosis Centre, Wythenshawe Hospital, MFT, Manchester. Director, Dr David Denning, Professor of Infectious Diseases in Global Health at
- Royal Brompton and Harefield NHS Trust. Aspergillosis clinic being set up at Brompton. It is run by Dr Darius Armstrong-James, honorary consultant physician in Infectious Diseases and Medical Mycology. He is also a Clinical Senior Lecturer at the National Heart and Lund Institute, Imperial College, London.
For more details contact our press officer on email@example.com
ABC News Article, Australia 9th August 2019
Article in the Mail Online 7th July 2019
Article in Breathe – ERS Journal
Article in Bishop’s Stortford Independent 20th April 2019
Article in The Sunday Times 7th April 2019
Article in The Daily Mail 2nd April 2019
European Lung Foundation
Aspergillosis Trust are included monthly in their newsletter
The Road To The Correct Diagnosis
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 was always ill though, any slight cough or cold my siblings had I had it worse and invariably it turned to chest infections. I remember suffering an asthma attack on the way home from school when I was 9, we had moved and it was quite a walk for me, a man I didn’t know found me and carried me home to my mum on his shoulders, it turned out he was the postman! I would be taken home from school by a teacher in the middle of the day and left at the front door, my mum would be at work so the key was on a string through the letterbox! How times have changed. I had all the usual childhood diseases, always worse than anyone and always with either an asthma attack or chest infection. It really affected my schooling, and although I was often ill I belonged to every team at school, Hockey, Netball, Tennis and Athletics.
In 1992 (I was 32) I had my aortic valve replaced as I was born with a bicuspid valve which was discovered 2 years previously when I was in hospital for minor surgery. It had been gradually deteriorating, affecting my breathing and energy. I was referred to Cardiothoracic Consultant who called a specialist from London to check me over who within 5 minutes of meeting me told him I ‘just had asthma’! I insisted it wasn’t ‘just asthma’ and was told if I wanted to ‘waste’ her time I could go up to London for an Angiogram! I did and immediately after it I was surrounded by her colleagues all agreeing that I did need surgery. After that surgery I felt really well, a new woman and recovery was swift. I still had asthma and my life continued as normal except I had more energy to play with the children and do the usual things like housework and continue my job as a childminder.
I had a few good years lung and heart health and lived my normal life. I had so much more energy and was able to get a full time job managing a Herb farm which included Tea Rooms and 2 shops which I loved. Sadly I was only there for 18 months as my body let me down again with a bout of Glandular Fever which then was followed by more Asthma, chest infections and viral illness. Then I started having bad winters with lots of breathlessness and chest infections from October to February. I got in to see my consultant on a more regular basis but for all his tests and appointments all he could come up with was that I was Hyperventilating!? The best thing he did for me was prescribing Seretide which has kept my asthma symptoms under control ever since, my wonder drug.
In 2004 I was again facing Heart surgery as my previous valve had calcified and again the breathless and exhaustion side effects were showing themselves. I wasn’t worried about this surgery as I had sailed through the first and the recovery. However, this time when I woke up on the ventilator (you are on this for the first 24 hours) I couldn’t breathe. (It was a traumatic time and eventually left me with PTSD). My lungs were badly affected and all I could think about was getting out of hospital as fast as possible. I had a Ventolin inhaler with me and used it constantly over the next 3 days until they said I could go home I was so desperate to leave.
On returning home my GP visited and my breathing was so bad he put me on oxygen for a couple of weeks. I was still short of breath, my friends came to walk with me as I recovered from the surgery, but I never recovered to normal. Now I couldn’t walk so far or so fast and even a small slope defeated me. I was totally exhausted all the time. Nothing like the recovery of my previous surgery. I did the rounds of what’s wrong, again seeing Heart and Lung Consultants. The heart tests came back ok but my Cardio Consultant mentioned possible Bronchiectasis. This was early December 2005. I didn’t get this information until much later, I have no idea if this information was passed to my Respiratory consultant or got lost in transit. I was now seeing a new Consultant, he was a locum and took the place of the previous Consultant who had retired. He was very dismissive of any questions I asked and I asked a LOT of questions! I had explained what had happened to me and how it affected my lungs but he just kept telling me nothing was wrong, ’I just had asthma’! I told him that my asthma was under control and this wasn’t asthma but he wouldn’t listen. I also explained I couldn’t feel the air going into my right bottom lung, and requested seeing a physiotherapist to learn some techniques to move the vast quantities of sputum I now produced. He did agree but unhappily. The physio agreed I did have blocked air entry and lots of crackles. She took the time to teach me Postural drainage techniques to help me clear my lungs and taught my daughter cupping techniques to help. When I next saw him in late December 2005 he refused to take her results from me until I insisted it went into my files. At my next appointment in June 2006 he said ‘If you want to waste more of my time and insist you’re ill I will give you these last 2 tests and do no more for you!!’ (a by now familiar phrase). One was a CT scan with ‘to disprove Bronchiectasis’ written across the top and the other was a blood test for Aspergillus. Within 6 weeks I had my diagnosis of both conditions, Allergic BronchoPulmonary Aspergillosis, (ABPA) and Bronchiectasis. With a prescription for an anti-fungal medication, Itraconazole, I felt at last I was on my way to getting better.
My journey didn’t quite stop there as I was still just as poorly and the Itraconazole didn’t seem to work. I hadn’t used a computer much before but I researched support groups for both diseases. I found a really good online support group for Bronchiectasis and the Aspergillus Support group online too. On the Aspergillus website was a Patient/Dr Question and Answer board for patients as well as support and research articles. I put my questions as to why I wasn’t feeling better yet? Professor Denning answered (although I had no idea that’s who he was) and after that, I was saved. He invited me to get my GP to refer me to his clinic in Manchester and by October 2006 I was there for my first appointment. The Itraconazole was changed to liquid form as I wasn’t absorbing enough of it and it started to work but best of all my sputum was tested for any living thing and there was a fair few, including Stenotrophamonas Maltiphilia, Staphylococcus Aureas and Pseudomonas. Along with getting treatment for my Aspergillus and also for all these hospital acquired infections I started to recover some of my previous lung health. I could breathe again. Then at the end of January 2007 my sputum sample grew Mycobacterium Xenopii. An Atypical T.B. To treat it and the Aspergillus I was put on 3 different antibiotics that would carefully balance with Itraconazole. This treatment can last for 2 years and was pretty gruelling. At my next appointment in April I was told that my Aspergillus had shown resistance to Itraconazole and was prescribed Voriconazole. By the end of 2007 I was struggling still with not only Mycobacterium Xenopii but also E.Coli, all the antibiotics made me feel so ill I was prescribed nebulised antibiotic to fight E.Coli.
Going into 2008 my health seemed stable so in April it was decided I could come off the Mycobacterium drugs regime after 14 months. By June I was in my local Hospital Respiratory ward. A CT scan showed that I had a round patch of pneumonia now growing in my right lung I was admitted for 4 days IV treatment and oral antibiotics after. I was due at clinic in Manchester so got discharged to go to that clinic. Professor Denning did not agree with the diagnosis and said it was a cavity and so another 2 weeks in hospital on IV medicines up in Manchester. I was discharged with Nebulised Amikacin for a month and back on treatment for Mycobacterium Xenopii. I was also diagnosed with an azole resistant strain of Aspergillus Fumigatus and changed from Voriconazole to Posaconazole, which showed some sensitivity. In October I had an infection in my leg, Cellulitis. We had gone to stay with family and I remember waking my husband in the night with the pain in my leg but I have no memory just a few letters from Hospital. I was admitted to a local hospital and more IV’s followed. I then went back to Manchester for a clinic and was so unwell still that they admitted me to the wards. It was my Birthday and I remember I couldn’t eat the cake my family bought for me it was my favourite Toffee Lumpy Bumpy Cake! I had been for a bronchoscopy I have no memory of it just a vague recollection I was coughing lots of fluid continuously. After that I am told that I just continued worsening, going into Respiratory arrest. Professor Denning had been called by then and waited with my family until they got a bed for me in Intensive care and put me into an induced coma to try to save my life. While in the coma my Kidneys failed and I was put on dialysis, my family were called. It was a terrible time for them all. It took a long while to recover, not least as my legs were numb from the knees down and I was weak as a kitten, but it all cleared up over time and I’ve just been left with Peripheral Neuropathy in my feet and a deterioration in my short-term memory. I feel lucky to be alive!
Since then I have dealt with my IgE levels going Up and being treated with steroids and then going back down, then up again, not really stable for long. I also still have frequent chest infections, more recently E.Coli for 2 years. It became resistant to all antibiotics until I was prescribed Nebulised Tobramycin which worked. During 2017 I realised my sinus was starting to block up I spoke to Professor Denning who said best to see an ENT consultant. I did and went for a CT scan which showed much blockage in my left sinus and some in my right. He sent me away with Sinus Spray. Last year I started blowing out large amounts of infected mucus, I took photo’s and assumed they were fungal. I showed them to Professor Denning who advised I went back to E.N.T as I probably needed surgery. One day in June I started sneezing and about an hour later after much blowing and sniffing a round ball of brown seeds popped out!! I took a photo and put it in a postal pack for Manchester Laboratories and wrote a note saying this came out of my sinus, please test. Normally we send sputum samples between appointments if necessary. When I got to clinic a few weeks later I found it was Aspergillus Fumigatus and sensitive to, Isavuconazole a new Antifungal medicine, to help fight the fungal infection. Sadly, although It helped and I was getting rid of a lot of fungal infection from my sinus it also affected my Liver and I had to stop taking it. There were no more antifungals. Professor Denning told my husband we had reached the end of the road as far as antifungals go. I felt terrified and contacted Professor Denning and he agreed I could carry on with Amphoteracin B as I still had loads at home. At the end of last year, I started coughing nasty infected mucous up and sent a sample by Post. At my next appointment I was given the news I now am growing a new fungal infection, Aspergillus Niger, in my lungs and it is sensitive to all antifungals.
I now continue to nebulise Amphoteracin B as it will definitely help contain the Niger infection and ‘may’ do some good with Aspergillus Fumigatus. I have hope that more Antifungal drugs will soon be ready for patients like me, complicated with azole resistant strains of Aspergillus Fumigatus with Bronchiectasis adding bacterial infections the mix.
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
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
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
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 was started on posaconazole, prednisone reduced slowly from 30mg daily to 2mg daily.
I am glad to say that
I had four visits to Manchester in 2017 and
This year has been pretty bad with chest infections and three collapsed lung but
I know we can never be sure of the exact source of me contracting aspergillosis. I was 63 when
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
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
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
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.
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. These would take several weeks to recover from. Each time I
went to the GP, I was given amoxicillin, a broad spectrum antibiotic, with no
sputum tests taken and cultured. So treatment was empirical (or blind) as the
infecting microbe was unknown. That went on for about 6 months and I was told
by the GP, ‘some patients with asthma just do get lots of infections’. It’s
important to raise awareness so that frontline staff such as GPs and asthma
nurses think of fungal infections sooner, if repeated courses of antibiotics
aren’t helping. This will also help to limit unnecessary exposure to
antibiotics and help to reduce Antimicrobial Resistance (AMR).
Also in early Summer 2008, I contacted the GP whilst having a severe asthma attack and needed to be given nebulised salbutamol. I didn’t have a nebuliser at home at that stage. ABPA often presents as uncontrolled asthma, so it is ‘hidden’ or ‘masked’ which is why it isn’t picked up. GPs and asthma nurses can assume that patients aren’t using their inhalers regularly or correctly, when this isn’t the case.
It isn’t just people with asthma that can be affected by
aspergillosis, but those with cystic fibrosis, bronchiectasis, COPD, or TB.
Also people with Primary Immunodeficiency Syndromes (as in my case), or those
on immunosuppressive therapy for organ transplants, or those on cancer
chemotherapy or people with HIV/AIDS.
I had a quiet spell with the good weather, as ABPA can calm down when it’s warm and dry. No further investigations were made, until I needed an x-ray for what seemed like another bad chest infection in October 2008. I had sharp pains when breathing in, which were in the middle of my chest. Instead of another infection, my lung had collapsed! It was the left upper lobe that had collapsed, due to a mucous plug.
That was how the diagnosis of ABPA was eventually made, as aspergillosis causes hard, mucous plugs to form, which obstruct the airways. Choking-coughing fits, from trying to remove these plugs are a feature of ABPA and are exhausting. The treatment for the collapsed lung was prednisolone (steroid tablets) for two weeks, which allowed the airway to widen and for the plug to be coughed-up. The ABPA did cause permanent damage in the form of bronchiectasis (widening of the airway from mucous plugs and scarring). That meant damage to the cilia (tiny hairs) that line the airway and help to remove mucous. So it is harder to clear mucous in bronchiectasis and that creates a breeding ground for further microbes, causing infections and a vicious circle.
Things have progressed from ABPA unfortunately, as I now have lung cavities infected with azole-resistant Aspergillus. You can read more of my patient story, along with others on The World Aspergillois Day section of the website.