Aspergillosis and Depression: A Personal Reflection August 2021
Now that I am not feeling quite so down I thought it a good time to write about dealing with bouts of “the blues” that verge on Depression.
I have really been struggling on and off for a week or two. The pleural pain from ABPA has become quite debilitating and fatigue frustrating and exhausting. Waves of feeling hot, especially at night and at times I become aware that my breathing has become shallow and rapid in an effort to bypass the discomfort of breathing. (Time to kick in good breathing techniques)
I have been back on Itraconazole for over 8 weeks & I think I was hopeful that it would bring about improvements; but not as yet. I also only have one kidney and a ‘contorted urethra’ that causes urinary reflux, so pain /discomfort and issues in the plumbing department. Osteoporosis from extended Prednisone treatment and neuro pain in my feet and legs. I ache all over. I feel like I’m living on Paracetamol, inhalers etc don’t seem to make any difference. Doctors confirm that I have no wheeze.
First thing in the morning my mouth is encased in dry foulness that then reconstitutes as a yellow brown foam until the sinuses and upper bronchial tract have been cleared; then it settles to a white or pale green foamy mucus. Getting the pain and the breathing back under control each morning seems like a huge mission that takes at least two hours for meds and gravity to kick. (And maybe also a little coffee ritual)
A patient recently reminded us about daily energy levels being visualised as 12 spoons for a day and every little thing we do uses up a spoon of energy. Of late my spoons have only been small teaspoon size!
None of the symptoms from all the above things listed, on their own, could be classified as major or significant; but they combine to make it feel like I have just got over a severe acute bout of pneumonia (but I haven’t actually been that sick). Passed experience leads me to think that with time, rest and rebuilding fitness ….. all can be well again.
However the reality is: What is caused by what condition and what is a side effect of medications is almost impossible to identify. The whole mess is a complex balancing act for the medical team between the various conditions and possible side effects to get a reasonable quality of life.
I was pushing on, learning to accept that I have to physically rest more often but had little sitting project I could do. “I can handle this” I thought. Then a couple more things went wrong; I ripped another layer of skin off my “prednisone tissue paper arms” that required medical dressings then NZ was plunged into a Level 4 Lockdown because of COVID Delta variant breaking out in the community. So a planned camping trip to celebrate friends 50th Wedding Anniversary and going back to my beach home to work on projects and collect belongings I hadn’t yet moved to the unit all got cancelled and I was confined to quarters. suddenly I was overwhelmed with despondency.
I have dealt with Depression many years ago and also as a Grief Recovery Facilitator, I have the knowledge and the tools to help myself through this. But it came in waves and the energy to fight was not available. It can be a very scary place to find oneself.
Depression is not rational (I have a great deal to be thankful for and conditions in New Zealand are far from difficult). As I was thinking through why I was struggling to throw off the despondency, I realised that to a degree I had not yet fully grasped the extent of how Aspergillosis effects my life. I had had some periods of feeling pretty good compared to how sick I had been when first diagnosed and Flares since then had been relatively short. This time not so much. A bit like when first working through a bereavement loss, you think you have grieved and come to terms with the loss. A bit of denial of the impact maybe. Then suddenly it hits…. Aspergillosis is Chronic. It will not be recovered from. There will continue to be readjustments in lifestyle needed.
These realities do not need to send me into Depression. Recognising and acknowledging the realities can then empower me to see the bigger picture. It can be managed. (To a degree). There are others who have overcome greater issues than mine. There are things that I can work on that will help. My struggle can be an encouragement to someone else. Talking with others and writing all helps.
More importantly, for me, As a follower of Jesus Christ, I firmly believe in the sovereignty of God and in the midst of any trial or difficulties I may be having in this world, He has a greater plan for my good, to draw me into a closer relationship with the Trinity of God the Father, Son & Holy Spirit, preparing me for eternity with Him. The trials that I face are instrumental in that process. I am currently rereading a very good book “The Pressures Off” by Larry Crabb that is helping with my thinking on this.
My story starts like many of yours. I was treated for bronchitis for over a year, mistakenly, then pneumonia, then I landed in the hospital with sepsis and pleurisy, and almost died. After sputum cultures by a pulmonologist in the hospital, they found Aspergillus Fumigatus, Macrobacterium Avium Complex, and pseudomonas. Sound familiar?
This was back in the mid-2000’s before they knew what to do about any of this in the USA. When I tried to connect with other sufferers, they were inhaling bleach to get rid of it! I was put on antifungals and continual antibiotics, oral and IV to try and control the pseudomonas… and later Stenotrophomonas. I was so sick! My kids were young then and they were helping to take care of me! How can this all happen?? My condition deteriorated from there and I was forced onto 24 hour oxygen with an “R2D2” machine at home and a backpack when I left the house. My fingers were blue and no one could get my infections under control. I was convinced I had Cystic Fibrosis or something else!
Finally, after many doctors and clinics, I found an Immunologist/Pulmonologist who diagnosed me with a rare Primary Immune Disorder. He put me on Methotrexate, an IV/IG, and 3 types of antibiotics. Within 3 months I was off of my oxygen. In 4 months I was almost back to normal and had to learn how to live as a non-ill person after years of being sick. Now, fast forward to 2020.
In December 2020 I came down with COVID. This unfortunately reset everything. We are talking almost 12 years in remission!!! I’m so sad and angry that I’m in this place again. Aspergillus in my lungs once more. Short of breath, my kids and husband banging on my back again. It’s so frustrating. The only positive part is that I’ve been through it before and know what we did 12 years ago. It’s a lot different going through this in my 50’s than it was in my 40’s though, and after going through COVID, too. Thank you for sharing your stories everyone. It’s very helpful to read!
31st July 2021
During the last weekend of February 2020, I had a bit more of a productive cough than usual. I stayed in bed, as I felt even more fatigued than usual too and that’s already a lot! I have aspergillosis, Nontuberculous Mycobacteria (NTM), asthma and bronchiectasis colonised with Pseudomonas. The underlying reason for these atypical infections is a rare primary immunodeficiency (PID) syndrome. I have to infuse immunoglobulin (antibodies) subcutaneously once weekly at home, as my immune system doesn’t make antibodies very well. That’s in addition to daily quadruple (antibiotic) therapy for NTM, another antibiotic as prophylaxis against Staph. aureus and PCP and IV caspofungin (antifungal) for 14 days every 8-10 weeks.
On the 1st March, I had a severe pain in my right hand side in my ribs and my neck. It felt to me like I’d pulled an intercostal muscle (ribs) and an accessory muscle (neck). The pain was so bad that I could hardly cough and I certainly couldn’t breathe in deeply. I also had worsening shortness of breath. I realised it was better to get on top of the pain, to be able to clear my lungs. It was a productive cough though, not a persistent, dry cough as listed in the COVID-19 symptoms. So I felt it didn’t really match with the description of the ‘red flags’ for it. I didn’t have a sore throat at any point. I did have a high temperature, which went up to 39.5°C during the first week of March. In addition to that I had the neurological symptoms of headache and dizziness, but not impaired taste and smell. The final symptom was coughing-up dark red, thick mucous (haemoptysis) a few times a day, for several weeks. I’ve never had haemoptysis to that extent ever before, or that dark a red. The mucous can sometimes be ‘pinky’ in colour. The improvements on my chest CT scan didn’t reflect the development of haemoptysis either. So it seemed to me like something else was going on in addition to the usual lung problems.
I had phone consultations instead of outpatient clinic appointments with two consultants. The first one was with my Mycology consultant on 25th March. He felt that it’s possible that I could have had COVID-19, despite not having the sore throat. We discussed if I hadn’t had it, should I go into hospital daily for my 14 days of IV caspofungin, due to being in the shielding category and having to stay at home for 12 weeks, or should I delay treatment? The balance of risks were in favour of starting sooner due to lower numbers of cases of COVID-19 in the UK compared to Europe at that time. We also talked about the SARS-CoV-2 virus entering the respiratory system via ACE2 receptors in the epithelial cells. We both thought that ACE inhibitors (medicines ending in ‘pril’ e.g. ramipril) used to reduce high blood pressure should help prevent infection, but that is pure speculation. There is confusion in this area, so research is needed!
The Immunology consultant also said on 27th March said that it was possible I’d had COVID-19. However, there is no way of knowing for sure if I have. COVID-19 blood (serological) tests look for the presence of antibodies produced by the immune system. If anti-COVID-19 antibodies are present, then that means a person has had the infection in the past. However, these tests might be inaccurate in people with primary immunodeficiency syndromes, who don’t tend to make antibodies properly. It differs in the various PIDs. Some people with PID will make a detectable antibody response but most won’t. Also immunoglobulins are manufactured from donated plasma from people in the US. In time there will naturally be antibodies to COVID-19 in these products. This will help provide protection, but test results for COVID-19 infection won’t be accurate. The consultant said that they don’t know yet if having COVID-19 confers immunity. He also said that if they need patients to come in for procedures then they pull the curtains inbetween beds, everyone wears masks, staff also wear aprons and gloves for infection control purposes.
The only benefit from having a primary immunodeficiency syndrome I’ve found so far, is that we might not have severe COVID-19 due to the lack of a ‘cytokine storm’. These cytokines (proteins) control inflammation in the immune system. If they go into overdrive they can cause havoc in the lungs and cause acute respiratory distress syndrome (ARDS) and respiratory failure. We may have mild to moderate COVID-19 if we become infected, rather than the severe form. This is due to our immune systems being dysfunctional and unlikely to become overactive.
So, I still don’t know if I have had COVID-19 but it is possible! I will probably never know. If this was mild or moderate COVID-19, it was still bad enough on top of the usual lung conditions though…
Important points to note:
- You don’t have to experience absolutely all of the symptoms for it to be COVID-19.
- So ensure you keep 2m away from people if you have any of the symptoms at all to avoid infecting them accidentally. It will also ensure that you don’t catch COVID-19 from them.
- It is possible to have COVID-19 without the sore throat for example. It can also be possible just to have neurological symptoms, such as dizziness, headache and impaired sense of taste and smell. Please see: www.pharmaceutical-journal.com/news-and-analysis/research-briefing/neurological-symptoms-common-in-covid-19-patients-researchers-say/20207915.article?firstPass=false
- Wearing a mask only prevents you from passing on the virus to others. It doesn’t stop you from getting COVID-19.
- Ideally, if you need to have any medical procedures where you can’t keep 2m away, for example, blood tests, ensure that you are wearing a mask and so is the person carrying out the procedure. Wash your hands afterwards. When you get home, remove your clothing and have a wash. Then put your clothes in the wash.
Self Isolation during Covid-19
I suppose we are fortunate than most during these weird times of lockdown during the worldwide Coronavirus pandemic. Despite a few early mis-steps, the Australian Government have been handling minimising the impact of the pandemic fairly well, with the federal and state governments fairly much in agreement as well as consulting with and listening to medical experts. We started 2020 with wide-spread bushfires across the nation with lives and homes lost. During that time, those with lung conditions were confined indoors as thick smoke enveloped large areas. Little did we know that was just practice for a much longer period of mandated lock down, once again isolated inside our homes.
Living with chronic illness I’ve learned to be careful with my health and I do my best to avoid exposure to germs. So I spend more time at home than most. Subsequently the thought of spending time at home in order to protect my health and my son’s health is not as overwhelming as others seem to be feeling about it. However my anxiety is perpetually high at the thought of me or my son, who has CPA, falling ill. I’m a germophobe. For years I’ve been counselled that my fears are unrealistic and I need to consider the prospect of falling ill more realistically, that is not as likely as I imagine. To wake up one day and realise my worst fears have come to reality has elevated my anxiety extraordinarily. I admit I have become pre-occupied with my anxious thoughts and what is going to become of this pandemic.
Yesterday an enlightening thing happened. I was chatting on the support group. I’ve been finding this a calming activity, perhaps because I am craving the company of others, perhaps because I don’t feel different amongst others experiencing health issues and being concerned regarding their health, perhaps because we’re all doing our best to support and encourage each other, perhaps because there’s the occasional light-hearted post, perhaps because we are all seeking factual helpful information and not getting caught up in or enraged by media hype. Someone mentioned their garden then shared a video of their delightful backyard pond, which started a discussion about others’ yards or yard substitutes. I realised how fortunate we were in regards to our location and the circumstances in which we find ourselves. My son and I amicably share our space with our loving and entertaining cat Scarlet. We might only live in a small two bedroom unit but it has everything we need and a good-sized balcony on which to relax and breathe fresh air and catch some filtered sunlight. We have food and access to online shopping and home delivery. We are living inside our self-imposed home isolation bubble, which is keeping us away from direct contact with any Coronavirus exposure. So we might be here for a while, months in fact, but we can handle that if the alternative is falling ill with a potentially deadly virus.
Our location has its positives. When we moved in here we were overwhelmed with how new and functional our unit is, like a holiday unit I kept saying. We overlook the backyards of two of our neighbours – we get to enjoy the view without having to do the mowing or gardening. We have a good-sized balcony which we have made fairly private. Our cat entertains herself on our balcony – climbing the shade cloth, watching birds, lying in the filtered sunlight and rolling on the concrete, snuggling on the cushions of our outdoor seats when we stand up and leave a nice warm spot for her, occasionally leaping onto a bird shadow on the shade cloth thinking she’s caught a bird, sleeping on the table or the top of the cupboard or on the shelves or in one of her many boxes. Our home is cosy and comfortable.
Like everyone I am deeply appreciative of the dedication of our healthcare workers and the sacrifices they are making on our behalf!! I am appreciative of all those who are going to work everyday so that people like us are able to stay in the safety of our homes to protect ourselves.
So every day I’m going to take the time to appreciate our blessings, take time to sit and enjoy the view from our balcony, delight in the exploits of our cat and enjoy patting her as much as she enjoys being patted, savour the food we are fortunate to have in our pantry and fridge, listen to my favourite records, re-read my favourite book, finish knitting that scarf, start on the craft packs I have in my cupboard, chat with others in the support group, enjoy having this rare opportunity to enjoy tasks and activities around our home without other time constraints restricting my ability to do so. Really appreciate, not focus so much on the what-ifs. And remember the adage “Worrying won’t stop the bad stuff from happening, it just stops you from enjoying the good”.
A different kind of Easter.
Easter has now come to an end. A very different Easter to what we had planned. Our trip to the Isle of Skye had to be postponed until the first of ? nobody seems to know. A lot quieter than normal this year, but our table still had good food on offer. Hot cross bun, anyone?
Today is the start of the fifth week of shielding for myself and hubby. . We started a week before we were advised to batten up the hatches.
Listening to the news today, it was reported that vulnerable, high risk people may be asked to lockdown for up to a year! Whether or not it will come to that who knows?
My reaction was a shrug of the shoulders.
If that is what it takes to keep me alive so be it. However there was an outcry from others who just could not cope with the thought of being locked down for a year.
It must be awful for people on their own in isolation, becoming self isolated, with no family or friends to rely on. Another reason for more testing so that those people can be visited by nominated people who have been tested for corona virus, to offer them a little company/shopping etc.
Personally i know we could cope with a years lockdown. Having a chronic illness it is normal to stay indoors for weeks/months on end, going out only for GP/Hospital appointments etc. Our lives become about appointments. These visits become an adventure. A chance to sit with a coffee and fancy cake and watch the outside world go by.
I am a little worried about exercising. It doesn’t take long for muscles to weaken if doing nothing for days. I
had been attending a pulmonary rehabilitation course before lockdown and was beginning to feel the benefits from it. I don’t seem to have the same motivation to exercise indoors on my own. Having some sort of routine in place also helps.
Living in a rural town we don’t seem to be going short of any essentials . The panic buying seems to have stopped. All our local shops are offering deliveries.
Like Jill Fairweather (who is doing a fantastic daily music game on her own FB page should you wish to join in) our bedding plants will be getting delivered soon, so our garden will be full of colour.
Fortunately our grand daughter is able to drop off anything we may need at the gate and we have a quick conversation with her from the front door so that is lovely.
The tree pollen
season is upon us and being indoors does not stop it aggravating my sinuses which are working overtime, even though i am taking 180mg Fexofenadine an Antihistamine tablet daily.
My GP has been in contact to check on
my health which was very reassuring, reminded me that if i felt a chest infection beginning, to start my emergency pack of amoxycillin and prednisone tablets.
On another note there are now plenty of shows and concerts and individuals giving their time for free on You Tube/Facebook etc., that normally would cost a fortune to see:
Yesterday i watched
Boccelli…”Music For Hope” Live. Broadcast from inside The Milan Cathedral. Such a beautiful setting. He finished by singing Amazing Grace outside the cathedral to an empty piazza. Very strange but breathtakingly beautiful.
Having recently downloaded the app for Disney+ there is a National Geographic Channel which has some amazing programmes to choose from.
(Lady and The Tramp was excellent as well lol)
To be honest it has felt a little bit like Christmas for us without the tree. We have been playing scrabble, charades, monopoly and last night, play and name the tune using a Kazoo!
I do miss going out for our usual drives into the glens and countryside seeing the beautiful scenery we are surrounded by, but i am reminded that it will be there long after the lockdown has finished.
The road in and out of Blairgowrie takes you past
Meikleour Beech Hedge. This is the longest hedge in Britain and the highest of its kind anywhere in the world. It was planted in 1745 and is over 100′ high.
I know a few people in the group are struggling with their health at the moment and it is an extremely worrying and stressful time for all of us. I sincerely hope that you are able to improve and come out the other side. This is an emotional time for many, i know when i received my letter from NHS Scotland reading in black and white brought home just how high risk we all our.
There are always people willing to listen and offer advice in The Aspergillosis Group.
Any worries or questions you may have about your health and medication especially if you are a ‘newbie’ to this disease, you may find an answer that will allay your fears.
Ending with a huge thank you to all our NHS workers, carers, key workers and to everybody who is obeying the lockdown.
The Road to the Correct Diagnosis
Hello, I’m Marie & I would like to share my story about how Aspergillosis has changed my life forever.
A little bit about me first. I turned 58 in December 2018 & enjoy an active life helping out with childcare on a weekly basis looking after my young grandchildren. I’m a keen cyclist loving my several times a week social cycling rides with a couple of groups & with my hubby for longer weekend rides. 100km rides for charity have become something to have on the calendar. Early on in 2018 we had already booked a cycling trip for fun, to cycle the Hebridean Way in the Outer Hebrides in June 2019 …185 miles over six days. We would be on hired bikes with paniers to hold our kit so already knew it would be a challenge, these bikes are heavier than our own road bikes.
I can pinpoint the start of my lung problem in November 2018 because before then I’d never had a chest infection or any lung condition at all, ever!
My grandchildren and I had grown sunflowers as part of a little competition to see whose would grow the tallest. They were beautiful & very tall, well over 7’ with giant heads that grew the size of dinner plates. Once they had died back I began drying out the heads for the seeds so that we could harvest them & grow more the following year. I forgot about them, and when I eventually looked inside the paper bag they were drying in I was upset to see them covered in thick mould. I took them outside to put in the garden bin, as I tipped them in a cloud of mould dust blew up over my head and onto my face, it was visible in the air. I knew instinctively that this would not be a good thing to breathe in so rushed indoors to rinse my face & blow my nose.
I thought no more of it until a couple of days later I started with a persistent tickly cough. It escalated over the next 6 days to a productive cough all day & night. I could not lay down to sleep without coughing & I was becoming exhausted.
I googled breathing in mould ( as you do) & I came across all sorts, however everything I found suggested you would need to already have lung disease to be affected, so I dismissed my worries & looked on the NHS website instead. Here the advice was to leave a cough 3 weeks as it would likely clear on its own. I had marked the start of my cough on my calendar & had kept a cough diary.
By day 15 I was beginning to feel short of breath as well as still coughing continually. I had to make an appointment to see a GP. I told my story of the sunflower mould & how my cough started so soon after this. My GP gave me a look & a shake of the head that I could even think this was related & almost laughed at me. I was prescribed a weeks course of antibiotics which I took hoping for relief, but no, they did nothing. So back I went & was prescribed a different type of antibiotic by the same GP. My coughing continued but I wasn’t getting any worse & Christmas was fast approaching. I kept myself busy & enjoyed Christmas with my family & the cough continued to annoy us all! My husband moved into the spare room as there was no sense in him not sleeping either. He could still hear me!!
It was a mild Winter & I carried on cycling throughout January after no cycling in December because I was coughing too much.
At the end of January I woke one morning feeling so tired, I literally had no energy. I had a streaming cold & my cough had somehow worsened over night, I felt dreadful & sounded awful. It was my childcare day & too late to cancel, so my daughter dropped her twin girls, who were 2 years old then, as usual on her way to work. Back I went to the GP with the little ones in tow ( I saw a different Dr at the practice who was running the emergency list) I told my sunflower story again when I was asked about the history of my cough. I remember being convinced I was right there was a link to my cough but this GP also dismissed my thoughts. Saying I sounded dreadful & it would be helpful to provide a sputum sample, I obliged but was disappointed that I didn’t produce anything like I had been previously at home. The GP was concerned about how unwell I was & could hear crackling low down in my right lung. I was prescribed a weeks course of the same antibiotic I had the first time.
Lab results later showed I had streptococcus pneumonia & I was then prescribed the same 2nd antibiotic as before to take if I still had a cough when the previous course ran out.
Are you still following.? To recap I had antibiotic A then B then A then B (Amoxocillin/Doxycycline)
My cough continued, I carried on with life.
The second week of February I started to get sinus pain, an achey face & painful teeth. The antibiotics did not work my cough continued & I was having coughing fits that left me exhausted. I was coughing up lumps & was feeling pretty miserable. I tried to manage the sinus pain with paracetamol & did some steam inhalation’s. I used information from the British Lung Foundation website to help me cough properly. I found this so helpful.
February 2019 My sinus pain became unbearable so off I went back to the GP & saw the same one as I’d first seen initially. I was prescribed prednisolone & sent for a chest X-ray. The steroids did the trick & cleared out my sinuses, thank goodness. In fact I had a full week of nose blowing & not much coughing before my cough returned again & this time there were streaks of blood.
Back to the GP again as I was feeling pretty rubbish. My observations were within the normal range & my chest was apparently clear & the X-ray results were not back. I was told sometimes these bugs hang around. On chasing the X-ray it was discovered inflammation was evident & I was prescribed a different antibiotic this time Clarythromycin ( the 5th course of antibiotics in case you’ve lost count) I would need another chest X-ray in 6 weeks.
If I was still coughing in 2 weeks a hospital referral would be considered.
The following day I felt really strange, I had coughed all night was tired & cold. My cough was making my chest hurt & I had a really painful left lower rib. I layered up & decided to go for a wander to a big supermarket. When I arrived I just felt dreadful so found what I had gone for & went home & off to bed to warm up. I lay there mid afternoon & noticed my hands & feet were freezing & tried to sleep. I rested.
My daughter text me & became concerned that I wasn’t making sense in my reply. She phoned to see how I was, very worried she told me she was taking me to A & E as soon as she had fed her three girls after returning from work. My hubby was away.
We arrived in A & E a few hours later where I was told all my observations were abnormal & that I was being treated for chest sepsis/pneumonia & they were concerned I had a pulmonary embolism. I told the drs & nurses about my mould encounter & had the same reaction as my own GPs. I was given oxygen therapy & IV antibiotics. I was being prepared for the high dependency unit when my numbers started to improve. A pulmonary embolism was ruled out. I was admitted to the emergency admissions unit for IV antibiotics to continue.There I stayed for 3 days & saw various Drs, all were told my story but no one took interest. They did consider legionnaires. I was assured that I had been given ‘the big guns’ in terms of antibiotics & that my cough would get better.
I was told my left back pain was likely a broken rib from coughing as was the coughing up blood….just the mechanics of coughing. NB **This broken rib showed up on a later CT scan & I was asked about chest trauma!
I was discharged home with a cannula insitu & had to return to the hospital each day for a further 3 lots of IV antibiotics. I was switched back to oral antibiotic A at a clinic review in early March.
I was told that my bloods were still abnormal but improving & that my sputum showed that I had had a different nasty chest infection & not pneumonia again. There was still reduced air entry to my right lung.
My cough continued needing steam inhalation’s to help move the phlegm. I could now hear a sort of sticky sucking noise in my lung when breathing.
At my next clinic visit mid March I was told how stubborn chest infections can be. I expressed my concern that it ‘could’ be something else. The nurse said ‘it will just be an infection & if I’m wrong I’m sorry! We will see you in a month.
I was struggling daily now with shortness of breath & had to return to my GP again My oxygen sats were 95% which were of no real concern & indicated a ‘flare up’ of the infection. I was prescribed antibiotic A ( the 8th course now)
I struggled on, having to walk really slowly plus stop & sit because I couldn’t breathe when out walking anywhere. I was getting pretty fed up & saw my GP again at the beginning of April. My oxygen levels were now 93% but my chest was clear. I was given a deferred course of antibiotics which I was only to take if I was no better over the weekend. My next hospital clinic appointment was days away & I was asked by my GP to ask for a respiratory referral there. I saw no point in swallowing any more antibiotics & I wasn’t worse so I didn’t.
In clinic I saw a different nurse than before, I quickly told her I wasn’t going home until I had been seen by a Dr. She was really worried about me actually & went to the respiratory ward to find a Dr. They told me my X-ray was no better, my oxygen sats were low & I had reduced air intake on the right. I was booked in immediately for a CT scan with contrast! We were in clinic all day long. The result showed that my right lung had a blockage, & the lower lobe had collapsed in. They didn’t know what it was, it could be worrying. I needed to be admitted now for a Bronchoscopy the following day. I hated being on the respiratory ward, everyone was coughing but I was so young in comparison to the other patients.
The next day I went for a Bronchoscopy, an unpleasant procedure for which I was sat up awake but sedated a little. The Consultant could not pass the scope past the ‘blockage’ which looked like green slime to me. It would not budge whatever was tried. A sample was taken for the lab. I was taken to the ward to recover & later discharged home after being told ‘this could be worrying’ & with an appt for clinic in 2 weeks.
The biopsy was inconclusive/sludge. We were non the wiser. They were concerned though & referred me for a PET scan & lung function tests.
At this point I gave my problem cough the code name Sunflower 🌻 & announced it to family & friends. Everyone was anxious & concerned but they were there for me in every way.
** Whenever I was feeling anywhere near normal I continued to cycle several times a week. After the lung blockage/collapse my cough was much less productive & really just annoying & at times embarrassing. I was more determined than ever that we were going to go on our holiday & started to increase the miles on my bike gradually. We were going to be cycling the Hebridean Way I was determined **
By the end of April 2019 I had been for a PET scan & had lung function tests.
Mid May I was back in clinic for the results of the PET-scan. I was told they were worrying results that had highlighted ‘hot spots’ The gland above my collar bone, glands in my central chest, areas in lung & gullet. I was told this could be inflammation or cancer. I needed biopsies of the neck gland & gullet ASAP
Towards the end of May I had an ultra sound guided punch needle biopsy of the lymph node in my neck. I was awake for this ( local anaesthetic) & knew how horrid it must have looked by the strength with which the nurse was squeezing my hand! At the end of May I heard that the biopsy was clear of cancer. An endoscope into my gullet showed acid erosion which could easily be treated with medication. Two more ticks in my favour.
The next plan was a further Bronchoscopy but this time in theatre at a bigger hospital. I shorty received an appointment for early June for a pre -assessment clinic.
I met a surgeon who gently & compassionately went through my symptoms & the results of my scans & tests. He said I likely have a carcinoid tumour in my lung & this conclusion on which he was sure was based on all the evidence & his experience. I would need surgery, the first part would be a rigid bronchoscopy to confirm his thoughts & decide if surgery would be VATS key hole or the bigger operation surgical Thoracotomy. The plan was to remove the lower lobe on the right & possibly the middle as well. He would also remove 2 lymph nodes, these were enlarged on my PET scan. I consented given all the info & assurance that the bronchoscopy would diagnose either way first. Whilst I didn’t share my sunflower story anymore because the dozen or so clinicians I had told along the way clearly thought I was nuts, my thinking was at least they will see it’s not Cancer when the bronchoscopy is done & not need to operate as discussed.
We mentioned our holiday which was fast approaching & the surgeon agreed the holiday was important ( we didn’t let on how many miles we were cycling) & surgery would be as soon as possible afterwards. In fact they would contact us whilst away to book a date.
Our holiday was fabulous, challenging, hilly & hard work. The miles were manageable but the hardest day was in pouring rain & dangerous winds going over the Harris Hills. We ended up pushing our luggage laden bikes up the steepest of these hills. The journey down that hill with pouring rain pelting our faces was fab. I loved feeling the weather, I felt so alive. How could I have lung cancer? We cycled the Hebridean Way, we did it! The on-road route is 185 miles (297km) across 10 islands, six causeways and on two ferries. It was just what we needed.
The team didn’t contact us whilst we were away & a letter didn’t arrive either. I was fed up because throughout the past months there had been a lot of delays & I was forever chasing everything. I eventually phoned them & was given an operation date. July 3rd 2019 my twin granddaughters 3rd birthday. My heart sank but I promised myself that all would be fine.
I had my surgery as planned. I was first on the list that day. My hubby accompanied me to the hospital, walked me down to theatre & as we said goodbye I joked “ if this turns out to be a sunflower seed “ I actually hesitated for a moment & very nearly changed my mind about surgery, my intuition was making me doubt it all again.
I woke to find that I had had an open Thoracotomy, bi lobectomy & lymphodemectomy. I had a broken rib as a result of surgery to. I was wired up to all sorts & had a chest drain. I was sore & groggy & could not wake up properly. I had an uncomfortable night with nausea etc.
The surgeon came & explained his findings, the lungs he removed were a mess, he’d seen the tumour sat there & it seemed he was right after all. We would only know for certain when the lab had examined everything.
I recovered quickly, had the drain removed & saw the impressive scar on my back for the first time.
I was advised that in the weeks following surgery to concentrate on recovery & expect to hear results in due course. It could be weeks.
At the end of July I hadn’t heard a thing so I chased my results as was instructed. The hospital had sent them but my Consultant hadn’t received them, or so I was told.
At the end of the first week in August I received a clinic appointment for the end of August. The waiting/ not knowing was unbearable.
I then had a phone call on 7th August from my local Consultant to tell me the ‘good news’ that I didn’t have cancer but a likely ‘ball of fungus’ there had been a mis-diagnosis & you could argue that surgery wasn’t needed! I was actually so stunned I could not speak, I could not process quickly enough what was said. I just politely wrote it all down. My mind was whirring with so many questions that I phoned back. My questions could not be answered other than it was Aspergillus mould. I was told not to research but concentrate on recovery.
I did all the research of course I did, & just had so many more questions to save for my outpatient appointment.
That appointment was awful actually. There was no further information to share & the Consultant was not concerned about the findings. He couldn’t explain anything further & said ‘it’ had gone & wouldn’t come back. I should feel grateful it wasn’t cancer because it had been really likely it was & just get on with my life. He refused an onward referral to a specialist saying it wasn’t needed. I was the fittest person in his clinic. I walked away from that appointment feeling very concerned & not cared for.
At this point I spoke to the British Lung Foundation & was given the contact details for the Aspergillosis Trust support group on Facebook. After a couple of weeks or so & after sharing my experience in part on the groups facebook page I was advised to contact a specialist direct. I contacted a Consultant at the Royal Brompton by email ( I had been given a name) whose contact details & bio I found via a google search. I shared my brief history & was advised I needed investigating & suggested I ask my GP to refer. My GP agreed & a referral was made.
After several months I had my appointment at the Royal Brompton & blood tests were taken looking for IgE & IgG specific to Aspergillus
My follow up a few months later in 2020 was by telephone due to COVID 19
I was told that I had an allergy to Aspergillus. Everything that happened to my lung was as a result of the allergic reaction.
When it’s safe later this year to return to the Royal Brompton I will have further lung function tests to give a picture of how my lungs are now, if there is any indication of asthma & to determine if I need medication.
Note to self, I told you so, sincerely …your intuition.
It’s very hard to explain how I feel now ( I am honestly still processing it all) & I do still have unanswered questions. I can’t turn back time & change what has happened to me. I wish someone had understood the possible link from mould inhalation to Aspergillus infection. By sharing my story I can only hope that in the future it will change somebody else’s path to the correct diagnosis without invasive surgery.
Without the help of the Aspergillosis Trust support group members I would have struggled to find the specialist help & all the information I now have to hand. I can’t thank them enough. My mission now is to do my best to help raise awareness of Aspergillosis & fundraise when I can.
I got back on my bike 4 weeks post surgery for a very short flat ride to spin my legs. It was a monumental moment & a happy milestone. I have gradually built my fitness back up & can manage distance & hills. I do however get short of breath on those hills, walking upstairs at home & keeping pace walking with others. Some of this is to be expected given I’m two lobes of lung down now.
I have also built my fitness up by swimming again, I love long distance outdoor swimming & swimming was something I was particularly frightened to try again. The first time I went I was so out of breath after 2 lengths! Within 6 weeks I was more comfortable in the water & could swim for 30 mins front crawl.
Recently after a little gardening I developed a cough & wheeze. I was fed up that this could all flare up again but was reminded that it could. I don’t know what my future lung health will be like but I know I’ve got all the support I need if & when I need it.
Note to clinicians
Please listen to your patient’s history however ‘whacky’ it sounds. Dare to think rare, you just might be onto something.
I’m a fifty-two-year-old woman diagnosed with the allergic form of bronchopulmonary aspergillosis (APBA) in 2016 after three or four years of symptoms and signs; then developing semi-invasive chronic pulmonary aspergillosis (CPA) in 2017.
What I’d like to get across to you with my story is that over the last five years, I have experienced such kindness and innovation in the face of shrinking NHS resources, that although this condition is very scary at times, I have had the best care and the best coordinated care – which are two different things. At the very end of this story I’ll conclude by some comments on what the system needs to deliver for people with aspergillosis based on a wider range of patient experiences that I happen to know about through the Aspergillosis Trust.
A quick history of me
From the age of four, I was a very atopic wheezy child and missed a lot of school. My asthma was scary, my eczema was limiting, and my hayfever overwhelming. Then I hit puberty and was transformed. I went on to enjoy 25 years of robust good health.
Cut to 2011, and I started getting regular bouts of what my GP said was bronchitis, which I put down to being worn out and stressed. I had a baby, a four-year-old, and my dad who I was very close to, had just died. Then in December 2013 after a night in A&E an hour’s drive away, with my mum who was having the latest emergency associated with the risky behaviour of early stage dementia, I felt absolutely terrible with an unstoppable foul-tasting productive cough and fever. The following morning my husband took our children, aged 3.5 and 7 at the time, to school. The next time he saw me I was in ICU at Homerton Hospital and I was gravely ill with septic shock and pneumonia [which I’d left untreated for 24 hours], and we were told the next six hours would determine if I lived or died.
I lived and oddly was completely well for nearly two years until I had the idea that I was going to develop a new career cultivating an apple orchard that had been left to run wild for thirty years [midlife crisis – don’t ask]. Tangled up leaves thick with furry mould and fungus brushed my face repeatedly… then I wondered why I had worsening shortness of breath over a three-month period. Because she was concerned we weren’t getting to the bottom of this, my super GP referred me for a chest x-ray in the gap between Christmas and New Year. I decided to go on New Year’s Eve because it would be quiet. Indeed it was, and I was home 20 minutes later, only to receive a call almost at once. I had to have a CT scan as soon as possible but services would be shut due to New Year, so I had to wait for a while. In the interim, my mind ran riot and I read up about every single lung condition on the internet. Aspergillosis sounded vastly better than many of the other conditions I terrified myself thinking about. When I was found to have some specks on my lungs that needed onward referral to a respiratory outpatient clinic, I told the doctors about the mouldy orchard and raised aspergillosis as a possibility.
Then two years of hopes raised, hopes dashed
There was early optimism – the kindly locum respiratory registrar phoned me on his last day at the Homerton, while I was doing some last-minute Easter shopping. He said – “yes it’s aspergillosis, I’m prescribing a few weeks of steroids, and by the time we review you in clinic, I’d expect those specks on your lung to be gone”. The sense of my good fortune was reinforced by a GP at my practice who said “Well that must be a relief not to have anything really nasty”. I felt very lucky and trusted the opinion I’d been given on how this would be sorted out.
Eight weeks later I was admitted to hospital for two nights with sepsis and chest infection. After the hospital admission my very kind local respiratory consultant fitted me in at the end of a massively long afternoon clinic and said “I don’t really know what to do with you next but I guess we could try antifungal tablets.”
I got a referral to the Royal Brompton Hospital as I felt I needed a doctor with experience and expertise in this condition. It was really reassuring to be assessed by exactly such a person and even better to hear I could immediately come off antifungals, and to be told that although I did have some bronchiectasis, it was at such an early stage it could be reversible, As a result I went on holiday thinking I was very lucky indeed and this was going to cause me few problems in life.
I came back from holiday, to a two page, very considered and helpful report from the expert consultant but written later by hand – ‘PSEUDOMONAS – VERY SURPRISING!!! There began two years of repeated heart-sinks. Over the next 10 or so months I did have various treatments for pseudomonas – culminating in a ten-day admission to the Brompton for IV antibiotics. Being in such a specialist centre, I had a lot of tests and got the blow that the speck had become a nodule, and I had the chronic version of the illness. My memory of ward round was hearing that this is not something that happens to every patient but of 220 patients in clinic with the allergic type of aspergillosis, I was the third person this has happened to. A couple of years on, I get the sense through other patient stories and some stats I’ve seen, that it may be more common for this transition to happen. Having a rare illness felt quite bad enough. When it made the switch, on a 1-in-70 chance, to the worse version of the rare illness, that was a blow that left me initially very down. I was reassured by what I’d been told, that the antifungal tablets I’d come home with would help my new problem. I was also on a high because the pseudomonas treatment worked like a dream and I left hospital feeling like I had new lungs, and ran two 10k races in the next few weeks, coming in just behind the elite runners in one of them.
Meanwhile a right old brew of life plus medical trouble was afoot, so even as I smashed my 10k times, I was blissfully unaware of what was to come next. Although I’d left hospital prescribed with antifungal tablets, my feet swelled up a couple of weeks in, and I was advised to come off the tablets and be reassessed in clinic at an appointment that was more than two months away. If I had not been preoccupied, I would have queried this length of time with no new care plan and no medication, and asked about alternatives. But as it was, I was deep in a time of huge stress and grief to do with my mother and the end stages of her dementia. Dementia is a very cruel illness and as an only child, I had no siblings to help. My mum had actually gone at this point in the sense that dementia had gradually been taking her, so I had lost my mum. Grief does unusual things to people. For me, I totally unprecedentedly ignored the onset of a chest infection and the start of a urine infection. I had literally lost my usual very strong will to live.
I got home from a stay at my mum’s therefore, and ended up unconscious on the bathroom floor with a broken nose and cheek bone. I had sepsis which had caused my blood pressure to drop. Lovely London Ambulance Service paramedics pulled me out from under the bathroom sink and I got admitted to the Homerton. This resulted in an eight-day admission and eight days of worsening news about my prognosis. But actually it was a turning point that I came to view as very fortunate in an odd sort of way.
Because there was a hiatus in my treatment plan, and I’d not really got started on antifungal tablets before I stopped them, the nodule had grown at what I was later told was an ‘alarming rate’. I got moved to a respiratory ward where the person in the next bed died a few minutes after I was installed in mine. I got told erroneously it turned out, and by a doctor who was very caring to me but unfamiliar with my condition, that nothing could stop my cavities from growing. My best friend from school turned up and wept all over my bed and told me I looked like the Elephant Man because of my bashed-up face. I was also negotiating when I felt well enough with Occupational Therapy services in another part of the country about the logistics of two carers hoisting my mum, back in her deteriorating dementia world. My husband brought our children in to see me and I had to pretend to be cheery. It was rock bottom.
However this emergency exposed the growth of a cavity in my lung and the seriousness of my situation, some weeks ahead of a routine clinic appointment. The admission started the superb communication and joint working of my case between the Homerton and the Brompton that has characterised my care ever since. No one else I’m aware of with this condition has been as lucky as me in this quality and level of communication, much of which includes me, between specialist aspergillosis team and local respiratory team.
It also saw me taking control of my own care. I was assessed for IV antifungals and was the first Homerton OPAT (Outpatient Parenteral Antibiotic Team) patient to be lined up for home administration of my IVs, starting with the next round. I was taught how to mix my meds, prime a line, and set my drip up for a 90-minute infusion. I was able to base myself in the kitchen at home once my line was in, and the freedom this gave me was empowering (not a word I use lightly). My mum went into the final days of life, and as misfortune would have it, it seemed very likely she would die during my IV week. I talked to the nurse and consultants about this, and they came up with a solution that quite honestly overwhelmed me – I could take three days of IV supplies with me, leaving right away, because they trusted me to do the self-administration. And the consultant rang her opposite number in my mum’s locality to say I might turn up if I got in a mess and could they be prepared to help me. I coped, and on the second day, my mum died and I was with her. This would not have been possible without the can-do attitude of the Homerton OPAT.
This can-do attitude was apparent as I continued my routine of six weeks off IVs, one week on. During 2018, an infection called Mycobacterium abscessus gradually took hold of me. The Homerton team had long exchanges of emails with my consultant at the Brompton to see if the treatment could be done as an outpatient there. Reluctantly having read what it was going to consist of, we all agreed that I had to be admitted to the Brompton. One of the many things that I think is great about the Brompton is that a lot of thought goes into making what I guess are complex treatment decisions concerning people with aspergillosis. Another consultant there also knows me a little, as an inpatient. I was hugely impressed and reassured to hear he had made his team, who were looking after the inpatients the month I was admitted, sit down and recreate the timeline of my illness from my records, so they knew about me. By now I had an issue with believing anything positive, which is unusual for me, and I felt fearful of where I was going to end up with the combination of semi invasive aspergillosis and Mycobacterium abscessus. I felt I had had my hopes raised the previous year, repeatedly, only to become alarmingly ill with aspergillosis and then to find out I had Mycobacterium abscessus as well, which sounds as though it can be difficult to treat. I asked to see the psychologist attached to the team, and while I was admitted we did some work on this issue of trust between doctor and patient. I was blasted with three different IV antibiotics for two weeks, and the outcome was that, looking at my CT scan, my consultant said the outcome was better than he’d hoped for and the improvement dramatic.
In the intervening period since I have became unwell, to the vastly better place I am for the moment, my specialist consultant has been unfailingly kind and above all responsive to me. This is so different to what I think the popular conception of a patient / consultant relationship can be. One example of this responsiveness has been that from the time I came into clinic following my emergency hospital admission and the revelation about the speed at which one of the cavities in my lung was growing, until very recently when he semi-retired, my consultant asked me to communicate directly with him via email. I also used this to talk to my equally responsive local OPAT consultants so we all had a dialogue which I was part of. That really is empowering.
My aspergillosis is currently stable and I don’t have to have my IVs every 7th week. The freedom is amazing. I’m carefully monitored. To go back to the hopes raised / hopes dashed, this is part of the developing relationship of trust between doctor, the rest of the MDT, and patient. When I was an inpatient at the Brompton and very low, I asked the other consultant who knows me whether I should be downcast or optimistic. He said I was someone who for some time, the concern had been that they couldn’t really get a handle on my situation. He now thought I was about to turn a corner and could foresee a time when I could do without IV antifungals and just be taking the tablets. I happened to re-read my diary of that admission the other day, and this is what has in fact happened. I think with all my doctors now I have frank conversations about what the odds are for certain things and I ask more questions. Alongside that I now feel very solidly included in decision making, respected, and treated as an individual.
I was lucky because of the communication around, and co-ordination of, my care. I’d like to move out of London but daren’t disrupt my perfect quartet of specialist hospital, local OPAT and hospital, GP practice, and endlessly helpful pharmacist round the corner. I figure this is a bigger prize than living somewhere with cleaner air. Co-ordination is what all aspergillosis patients should have, and especially when we are too unwell to do it for ourselves. Even I, who have a dream team, still spend substantial time on liaison. I get the best care, and I feel anger and outrage reading other people’s experiences in our patient group, because this should not be a postcode lottery, but it is. Communication and advice from the expert to the less experienced local respiratory team is essential. I’m again unusual in having that working as well as it does. Primary Care is where even bigger variation lies. For some people with aspergillosis, any sense of a team working to support them is non-existent.
Medical teams are only part of our lives. The Aspergillosis Trust and also the virtual patient groups established and moderated by the National Aspergillosis Centre in Manchester, are huge sources of support. We are not just patients – I was the mum of young children frantically juggling a demented old parent, somehow being a together sort of professional, and doing a bit to try and support other people who have aspergillosis. All the other people I know virtually with this illness have the same rich backstories but I’m not sure they are always heard or responded to.
I include here
the link to a film made with the Homerton OPAT which covers their work with me and has me talking about aspergillosis. *Vanity disclaimer: Unfortunately I had fallen over running two days before and broken my jaw and cut my chin. Also I wore what I thought was the most perfect blue shirt for ‘on camera’ only to discover it was the same colour as the hospital curtains, which has the effect of making me look like a disembodied head.
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.”
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