Marie’s Story

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. 

Gut feelings. 

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.