This image is on London buses from 7th January for 4 weeks so incorporates WAD. We have also written an article for magazines and Everton Football Club have published it for us.
There will also be a poster sent to Medical Schools and Hospitals showing all our supporters from our selfie campaign.
We also have a video to help with the campaign. https://vimeo.com/313364523
Two people organised coffee mornings to raise money for FIT.
Stories written by people with Aspergillosis
We have a lovely story that Leslee Alexander did for us as well. This has been posted on social media
I smiled when Jill Fairweather asked us to write a few words on how aspergillosis affects us. I am sure most of us could write a novel on the effects it has had on our lives, before and after being diagnosed. I could write a novel on applying, fighting and winning my personal independence payment (PIP) allowance with this disease alone.
Before I was diagnosed, I thought I had lung cancer. It has been five years since the start of my symptoms and about two and a half years since being positively diagnosed with allergic bronchopulmonary aspergillosis (ABPA) and chronic pulmonary aspergillosis (CPA). Worst part for me was the initial feeling of isolation and loneliness. I didn’t know anyone else who had this disease. My GP didn’t know anything about it, my friends had never heard of it. After a few months the phone calls to go to different events in my local area began to stop. I would say I could go and then on the actual day feel so unwell I used to cancel. So after lots of cancellations the requests to go became fewer and fewer.
I had to have a stair lift fitted because I was too breathless to climb the stairs. I experienced numerous episodes of bleeding from the lungs, two of them were life threatening. I was on 40mg prednisone daily and put on four stone. I had become very withdrawn. Apart from GP, respiratory appointments or hospital inpatient stays I didn’t go anywhere. I had become very frustrated and angry because I couldn’t get any answers as to what was wrong with me.
Since being diagnosed and put on the right medication for me personally, I have got my life back. Yes, I have bad days, i.e. pneumonia last year and more recently a collapsed lung but I can breathe, I can go out, I can socialise, I can exercise.
I know I am one of the lucky ones with this disease who has had some remission from it. I had tried voriconazole, but I was still getting bleeding and other side effects. Once under Professor Denning’s care my medication was changed to posaconazole, I stopped the prednisone gradually and went on a 6 week pulmonary rehabilitation course. I have since lost the four stone I put on, partly through diet and partly by exercising.
I also have a wonderful and understanding respiratory consultant who referred me to Professor Denning. I wasn’t keen to go as it is a 600+ mile round trip for me, but I am now so happy that I made the decision to attend the National Aspergillosis Centre (NAC) in Manchester.
I know for some Aspergillosis can be successfully managed, I am one of those. When I see how far we have come with raising awareness of this condition, from the five years that I first started with the symptoms, it is amazing. Who would have thought that we’d have an Aspergillosis Awareness poster on the back of some London buses for World Aspergillosis Day on 1st February 2019?!
My hope/dream is to arrive into A&E on one of my bad flare-ups and when they ask me what is wrong and I reply ‘Aspergillosis’, nobody asks me “what is that?”…
Each day to me is a blessing in disguise. I’ve had to learn not to be overwhelmed by having this disease and live life to the fullest. Some days are good, some not. I also wouldn’t have been able to face this without the support of my family and the Aspergillosis support group on Face Book, my fellow “Fungies” , to which I am forever grateful.
I have had ABPA since 2006 then CPA since 2013 amongst other lung problems, but Wythenshawe keep my health under control as best as they can.
I have Bronchiectasis and severe COPD. I have been successfully treated for Mycobacterium Avium Complex and Psuedemonas a few times. I have been in and out of hospital for a few years. I was diagnosed with Aspergillosis in April 2018 and at the time I could barely walk up a flight of stairs. My quality of life was poor, with more bad days than good. I was in Hospital in London for 3 weeks and this had a big impact on our lives. The cost of my family coming to visit and the distance was a big factor. I am currently responding well to 8 week cyclical treatment of Intravenous drug as an outpatient in our local hospital. My treatment is ongoing so obviously effects our lives. The good news for me, is I am responding well and breathing is good.
Since being diagnosed with CPA I am no longer able to work. I also developed epilepsy which affects my long and short term memory. This means my wife Karen’s life has also been affected a she has to drive me around an accompany me to all appointments. I couldn’t live with this condition if not for her love and support.
Cliff and Linda Whitefoot
Right. From the beginning, well not totally from the beginning but from before I was diagnosed with Allergic Bronchopulmonary Aspergillosis and the lead up to it and how it has affected both my family and I. It all started in the early autumn of 2015, with a visit to see my G.P as I had a really nasty chest infection, I was wheezing and rattling like an 80 a day smoker, which I’m not I gave up smoking 10 years or so previously, well the usual round of antibiotics just didn’t cut it and so onto a second visit in the late autumn as I was feeling really ill at this time and constantly coughing and coughing up tiny little black bits that can only be described as looking like poppy seeds. So more, stronger and hopefully more effective antibiotics should do the job, but in the meantime I needed to go for some chest x-rays, just as a precaution and to see what’s going on. The doctor also noted that I had the same symptoms around the same time the previous couple of years.
Well that went well, I had the chest x-rays done on the Thursday evening and on the following Tuesday while I was at work, I received a phone call from my GP; now this in itself is unusual for our practice as the doctor herself rang me. She needed to see me as soon as possible and she wouldn’t tell me over the phone what was wrong, just that she needed to see me that day and made me an appointment for that evening. I said I reckon I’ve got an idea what you’re going to say but she would not budge. We duly arrived at the surgery around 5-ish, our then doctor proceeded to tell she who must be obeyed and I that they had found a large mass on my upper right lung and that it was 99.5% certain to be Lung Cancer. That went down well!!
Things started to progress quickly from here, the following Saturday saw me at the local hospitals Cancer centre for a CT-Scan with contrast, the results of which would be back at my doctors in the next few days. We return to the doctors in the following week to be told that they are 99.5% certain that this mass is lung cancer and that I now need to see the Cancer people ASAP and they got me an emergency appointment in a few days.
A few days later she who must be obeyed and I turn up to my hastily arranged appointment with the Cancer Doctor and after viewing the chest x-rays and CT-scan he is 99.5% certain it’s lung cancer. In the meantime we had to do the hardest thing that we have ever had to do and that is to tell the kids that I have a 99.5% chance of Lung cancer, watching the two kids go through the range of emotions that they went through was probably worse than being told I had the Cancer in the first place, the other heartbreaking thing for me was having to tell my mum and to try and keep calm and level headed when all around us was going to hell and then having to tell my brother who lives overseas, over the phone was difficult enough but trying to keep calm was even harder.
The Cancer Doctor now decides I need more tests and an urgently arranged Bronchoscopy and lung biopsies are set up for me at another local hospital. The lung biopsy result comes back no cancer and the mass has gone. they have no idea what is happening. We believe the constant bringing up rubbish for the next few days after the biopsies that is where the mass has gone. That is however only our opinion, as it was we were now left in a kind of limbo nobody seemed to know what was going on and none of the professionals either informed us or had much idea what the mass was or where it had gone. We were then discharged from the care of the Cancer clinic with no further follow ups from anyone at the hospital. The sense of relief when we told the kids that there was NO cancer was amazing and the sense of shear bliss when we told my mum was unbelievable, I can’t put into words how I felt telling my brother but it was a feeling as though the whole world had been lifted.
That Autumn and early Winter was a period of absolute hell for us as a couple and my heart goes out to anyone who doesn’t get the good news that we got. So another 12 months or so goes by and around September 2016, I’m hit with yet another really bad chest infection, by this time the GP who had been dealing with me had left the practice and I was now being seen by a young Doctor who once again didn’t like the sound of the rattle and wheeze in my chest and once again I was prescribed two separate lots of antibiotics without much effect. This time not only did I have the horrendous cough with lots of rubbish including the ‘little black seeds’ there was also some really hard chunks of mucus. I was breathless, very tired, weary, no energy and lacking in sleep.
More tests were scheduled and after yet another CT-Scan another large mass was found,this time in the lower left lung, Once again nobody had a much of a clue as to why it had reappeared or why it had jumped lungs. Anyway my now regular GP could see that we were both getting stressed by this and she referred us to a particular Consultant at our local respiratory clinic, who on seeing me promptly ordered more Blood and sputum tests as she had an idea what may be going on but wouldn’t confirm to us until she had all the facts, especially after the “Cancer not Cancer” scare. Another appointment with the respiratory clinic quickly followed on from these blood and sputum tests, the Respiratory Dr was almost sure that we had a thing called A.B.P.A. which we had never heard of. More blood tests done to look for certain markers along with more sputum tests and she referred me to our County hospital for yet another Bronchoscopy with biopsies and lung lavage (wash out the lungs).Now the lung biopsies and lavage of both lungs was the most unpleasant procedure I think I have ever gone through, but it is through the lavage that an awful lot more rubbish is coughed out.
A week or so went by and we had to go to see the respiratory Doctor again and it was as she guessed, with all the tests that had been done she had confirmed A.B.P.A and referred me to Professor Denning’s Clinic at the National Aspergillosis Centre,Wythenshawe.
When I was told I had aspergillosis and was being referred to Wythenshawe Hospital, I cried. I cried because my brain heard ‘Asbestosis’. Well … who had heard of aspergillosis! Currently undergoing observation as to the best way forward as other meds are preventing the antifungals treatments from working. However, for me, steroids are the magic bullet and get tremendous relief within days. The worst side effect for me from this condition is fatigue. However, a good excuse to take extra care of myself and highly recommend Tai Chi as a gentle form of exercise that works on strengthening my lung function. We are a rare group.
My story is that I was diagnosed in 2001 after a dreadful summer of coughing, lung collapse and lots of different antibiotics by a very clever, persistent GP. I got mould plates to test my house and place of work from USA, I had to send a $50 in the post. My office was high in aspergillus reading (right under the eaves of an old building) and my bedroom where we had had extensive work the year before because of a rotten ceiling beam and damp wall. I had to do a lot of research myself as there wasn’t a patients’ network in those days. I was in hospital with pneumonia in 2000 and again in 2015 and 2017. In between whiles I’ve had various chest infections, sometimes I think because of aspergillus when I lose my energy totally and find it difficult to speak. In early 2015 I was very poorly with GP and hospital not listening to me. Persistence paid off and I was eventually given a blood test for aspergillus. The reading came back very high and since then the hospital (Kingston) is very helpful and aware of the condition. When I have been admitted to A&E subsequently everybody knows about aspergillus. The same with my GPs who now have other patients with the condition. I have been very fortunate in that a steroid inhaler(Fostair at present) has kept me going and I now have rescue packs of antibiotics. Since my last admission to hospital in December 2017 I have been monitored by Kingston Hospital by one of their consultants every few months. I think I joined the patients’ network about 5 or 6 years ago, I was 1001 member.
I don’t do selfies…..(not all illness can be seen – hence the back of my head…ha ha!!) … where are the emoji’s???
Me with my dogs, I now have four….My life savers…even though I’m allergic to them…sighs..
The worse thing before diagnosis was feeling like the biggest hypochondriac on the planet…I have been ill for many years. GP’s were as sick of me, as I was sick…
Finally getting a diagnosis after I (politely) demanded at CT scan was a blessing – or so I thought – I genuinely thought it was just a case of getting the correct antibiotics… Then the bomb shell hit….silly me, it was never going to be that simple. The first 18 months of treatment caused me to be worse than ever. Before the illness I’d been able to cycle 40 miles in the morning followed by 5-10 miles of walking in the afternoon….where as afterwards I could barely manage a mile…on foot or bike..
But, thanks to Graham Atherton, and the facebook site, I found Wynenshawe, and Amphoteracin B (the amber nector!) – Life is not the same, and never will be….but, I now have some good days…I’m one of the lucky ones. I just need to get that bike out!….
I look ‘healthy’ in this recent photo with my Labradoodle,
Toby at Men-an-Tol, Cornwall, as aspergillosis is a ‘hidden’ condition – but
infected lung cavities meant I struggled to walk up the gentle incline to reach
it. Just getting to the top to admire the Bronze Age stone site and scenery
felt like a real achievement.
I’d already had lung surgery in October 2015. This was to remove the left upper lobe, due to a large cavity infected with Aspergillus (fungus), Non-tuberculous Mycobacteria (NTM) and Pseudomonas. These bacteria commonly co-exist with Aspergillus, especially in bronchiectasis, which is permanent widening and scarring of the airways making it difficult to clear mucous. This is a vicious circle, because mucous ‘lurking’ around in the lungs makes a lovely home for microbes to thrive in. They all end up having a party in there! It makes me a ‘reluctant host’ though. Sadly, the lung surgery didn’t eliminate these infections and they’ve spread to other parts of my lungs. Currently the Aspergillus infection is resistant to all azole (oral) antifungals. The NTM isn’t responding to quadruple antibiotic therapy either. Usually triple therapy is sufficient for many people. So further research is urgently needed, to extend the range of treatments available for everyone in a similar, alarming situation. I never expected to be the poster person for antimicrobial resistance! That was never in the 5-year career plan…
It’s incredibly tough making the transition from being active and fully able-bodied – I enjoyed walking my dog for miles, to being limited in what I can do physically now. It really frustrates me and I rail against it. I would love to be able to run still. I was no marathon runner, but I did participate in several charity fun runs. I used to really enjoy playing tennis, badminton and squash, but can’t any longer. I would also like to go swimming and sailing again. Maybe even buy that Kawasaki motorbike I dreamed of, as I did pass my motorbike test a while back – a big tick on the bucket list! These activities are all off-limits now too, due to frequent lung infections or exacerbations of the existing long-term infections.
Despite all of this I am actually a positive, motivated, resilient, determined (my husband may even say stubborn!) person and prefer to focus on what I can do, rather than what I can’t any longer. That’s why most of the time I try not to reflect too much upon what life was like before getting the aspergillosis diagnosis, but think about what I can do to make a difference and help others instead. I wanted it to be something meaningful and to provide me with a sense of purpose. Hence co-founding Aspergillosis Trust with Jill Fairweather, Cliff Whitefoot and Dimpke van Nijnatten, with help from a few others, notably Jean Jones who does a fantastic amount of fundraising by holding coffee mornings. We are all working tirelessly to raise awareness and funds for research, but we are all fighting aspergillosis too and have good days and bad. So we would really appreciate extra help from anyone that would like to get involved with volunteering. Whatever your skills or however much time you can spare, we can find something for you to do to help us out – see our contact details below.
Writing and sharing this ‘patient story’ hasn’t been easy, because I could quite happily keep quiet and stay in the background, working behind the scenes as I’m a shy, private person. Everyone else’s courage in writing their story has inspired me to share mine, along with the need to raise awareness.
Please help us to help others get earlier diagnosis and treatment, as this is essential to improve outcomes. If repeated attempts to treat lung infection with antibiotics fail, then please think of fungal infections sooner. Similarly, if people have asthma flare-ups, despite using their inhalers correctly or have choking-coughing fits, sometimes with lung bleeds (haemoptysis) then
Written by Emily Perl Kingsley, adapted by Lizzie King Donaghy
I am often asked to describe the experience of living with an incurable condition – to try to help people who have not shared this unique experience to understand it, to imagine how it would feel. It’s a bit like this.
Looking ahead in life is like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a filthy place, full of crime, and famine. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream of that life is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”