The Road to the Correct Diagnosis
My life changed because of this horrible thing called aspergillosis.
Everyone has a story and this is mine.
At the beginning of 2011, I was super fit. I could work for 9 or more hours a day gardening, every day for six days a week and not be tired. I started doing a degree in horticulture, I also had a grown-up family and dogs that I walked twice a day. I started coughing but was told it was a simple chest infection. I just ignored it, as I had other things to worry about as my son was in hospital after his lung had collapsed!
After 8 months of getting worse, coughing badly, I was so tired that I was unable to do a day’s work. I had a really bad taste in my mouth, accompanied by a bad smell. I mean an ultra stinky smell – so much so that people actually walked away from me! In October 2011, I had an X-ray. Then I was sent to the hospital where I was diagnosed with TB and put on TB treatment. I was treated like I was unclean for a week in quarantine in hospital with people in masks, gloves and gowns coming at me with needles and other horrible medical things. It was a big horror story, but I am trying to keep it short. I was sent home with medication and left to it.
After 3 weeks of treatment, I was getting worse and by six weeks I had such a bad pain in my side, that I couldn’t breathe when laying down. By December, I couldn’t sleep yet I couldn’t stay awake either. It was such a strange feeling that I can’t describe it properly. I felt I was being eaten alive from the inside and that I couldn’t carry on. I wanted to end the savage pain in my chest and stop the vile taste and the horrible stuff I was coughing up. The GP sent me for an X-ray. She said go to hospital if you feel any worse. I went to hospital a few days later and got sent home after being told it was a chest infection and given more antibiotics. I was relieved to go home but although my super fit body was fighting it, my mind was fuzzy, I couldn’t function. My husband knew it was serious and phoned my parents and they did the 150 odd mile journey to see me. They had just arrived when the phone went and it was the hospital asking me to go back. So I went back, that was when hell started!
I had a CT scan and the radiologist told me about the cavity. It was filled with pus and was the size of a cantaloupe melon. When I saw the scan, I found it hard to believe that was actually inside of my lungs. They put a tube (intercostal/chest drain) in my side while I was in the scanner and as the pleura popped, all I could say was ‘Oh la la’. It was so surreal as they pumped out a huge amount of pus and rubbish from inside me. The tube came out a bit overnight and I started swelling up (known as surgical emphysema). It was put back in and I slowly and painfully went back down. I had the tube for 7 days before being transferred to London where I had a thoracotomy and lobectomy. I was frightened having to lift myself onto a very strange operating table, with the tube hanging down from my chest and my bucket (at the end of the chest drain) bubbling from my efforts. I thought I would have keyhole surgery as I didn’t know what a lobectomy was. No one had explained that it was surgery to remove a whole lobe of my left lung, which is divided into two. The right lung is divided into three lobes.
We (my husband and I) have some jokes about me coming round from anaesthetic. For me, it wasn’t like you see on the TV, where they come round and are alert straight away. My mouth was dry and I couldn’t speak, so I pouted so he would wipe my lips with the lollypop. I had an X-ray, but couldn’t sit up so I slumped against the X-ray board with my husband laughing because I was so out of it. You have to laugh, well we laugh now but it was so difficult.
I was told if I could wee I could go to the ward. Me being me I was on that commode like a shot, as much as you can coming around from anaesthetic after a 3 hour surgery with tubes buckets, wires and stuff everywhere. It felt like a few minutes, but I fell asleep there and was woken up with them saying you can go to the ward, just to get me off the thing.
Spookily, I had the same room that my son had after his surgery! I don’t respond well to surgery, I was very sick. My puke (sorry) was blue and every time I opened my eyes I was sick. I had a blockage, I was really constipated from surgery and morphine-based pain relief. Once that was dealt with, I felt so much better. They said if I could walk about, then I could go home. My not-so-super-fit body (now a bit flabby after steroids and sitting around for 6 weeks) wanted to move. So, I marched up and down the ward swinging both of my buckets and chatting to others, who were not so keen to charge about the ward. Hubby and I went to the canteen (surreal with two buckets in tow) and finally, the bubbles stopped in one bucket, so that meant as there was no longer an air leak in my lungs that I could have a tube taken out. I had been told it was horrible having them taken out, but it was over and done within a second. I didn’t feel anything of either tube coming out. What I could feel was an awful pain in my shoulder and back. It was only when the tubes were out and I was told I could have a shower, that I saw in the mirror just how long the surgical cut was. It reached all the way from my spine to under my arm. Now I realised why it was so uncomfortable.
I was told that the surgeon had to take more of the lung than he had wanted. Also that it was Aspergillus that had grown in the sample. Luckily, I haven’t lost the whole lobe just enough for me to affectionately name my left lung ‘stumpy lung’.
When I got home, things got worse. I couldn’t breathe, I was looking grey (due to lack of oxygen from my lungs not working properly) and I was getting fed up. I remember saying to my husband ‘What the hell just happened to me?’ I am so grateful to him for being there.
I had the surgery on 2nd December 2011. Then I went back to work at the end of February 2012. Being the stubborn person that I am (a strong family trait!) it wasn’t going to beat me. I needed to get fit again and walked the dogs, even though I was looking like a zombie and went to work frightening old ladies with my greyness and sunken eyes, but thankfully no bad smell!
I have spent the last few years fighting off some strange lung infections – if it’s rare I got it! I’ve also been diagnosed with a rare genetic immune disease (primary immunodeficiency syndrome) that not many people (including doctors) have heard of.
I call myself lucky as I have been relatively well, but things are changing. I have pain again, legs, arms, inflammation in the blood results, but my oxygen is 99% (only because most of the machines only go up to 99). I thought the lungs were pretty good. I can breathe and I had a test on the bicycle with a mask on, measuring my breathing and fitness and I am once again super fit. But the CT scan showed two cysts. One is in the upper left lobe and one is in the lower right lobe where I get pain, but I am reliably told I wouldn’t feel them, they are too small. The pain in the front of my chest was due to fractured ribs. I have grown a lot of mould on my last sputum test and was told at my last appointment at Manchester that it showed resistance to itraconazole.
Now it is the waiting game. In the meantime, I try to stay fit, eat well (if you can include cake in that) and moan like hell, as it helps get it off my chest, although not literally. I thought it was just the smell making people walk away, perhaps it wasn’t.
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 Aureus 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 many blockages 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 Amphotericin 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 Amphotericin 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 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.
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.
Stories written for World Aspergillosis Day 2019
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 Amphotericin 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 please
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.”