My Story: When I was dying....

I shouldn’t imagine there are many people who are still here to be able to tell a tale with the above title!

Background:

For many years I suffered with periods of dreadful ‘flu-like symptoms, unable to stop coughing, night sweats and exhaustion – and was consistently treated with antibiotics and antihistamines (I am an allergic person – to animals, dust, mites and stings, etc.) and had been previously diagnosed with asthma. At times I would cough up brown mucus plugs (as I now know they are called) but was unaware of their significance.

My latest episode was around March 2015 and was very similar in intensity to some previous experiences, with constant pain in my right lung. Following several weeks endurance, I took an initial course of antibiotics to no avail. I waited a few more weeks, but the illness was by now completely debilitating. Then one of the GPs at my surgery, who is very thorough and caring, prescribed a further different course of antibiotics and, after examination, suggested that if there was no improvement, I should have an x-ray. I had never been given the opportunity of an x-ray or any further investigation previously.

There was no improvement, so I returned to the surgery, but there was no available appointment to see the same GP again. I was advised that I now had no infection, but it was noted that x-ray had been suggested and the forms were provided, with the advice that an appointment/ results could take up to six weeks. I was feeling so very ill and told him I could hardly breathe and that I was wheezing, and I suggested salbutamol inhaler may be helpful in the meantime (as this had given some relief on other occasions), but he responded by saying we should wait for the results. Once again, antihistamines were prescribed.

As it transpired, I was able to get the x-ray appointment quickly at Queens Medical Hospital, Nottingham, at end of May, and a very kind radiographer had the results through the very next day. The GP who had suggested x-ray rang me with the results and advised that the image had shown a ‘mass’ on my right lung, which would require further investigation – and that the next steps would be fast-tracked. She went through the various possibilities – and we agreed that, as I had not lost my appetite, nor lost weight, it was not very likely to be cancer. Following discussion I said it could just be ‘gunge’ – apologies for the ‘medic speak’! She had clearly listened to my observations of the appointment with the other GP, as she rang back later to say she had arranged for salbutamol to be prescribed to me, in order to relieve my wheezing.

Fast-Tracking Begins:

The next step was a speedily arranged PET/CT scan at Nottingham City Hospital at the beginning of June. Getting to these appointments was extremely difficult, as I was so ill and extremely exhausted, with months of no sleep – whilst travelling I was constantly coughing, so much so that the bouts were causing vomiting. Another appointment was made for two weeks later for the results at Royal Derby Hospital. I am a single lady and went alone for the results. The Consultant advised that he had examined the scan, that I had a tumour at the base of my right lung, which had “been there a very long time” – and that he and his team were unsure at this stage whether or not they could operate! As you can imagine, I was in total shock, but was able to think through the fact that I did not have the main symptoms of weight and appetite loss – and asked to see the scan. Very unpleasant – but I was still wondering how he knew this was cancerous (and not just gunge!), until I saw the ‘tentacles’ stemming from the tumour – and, of course, I also bowed to his very superior knowledge.

In discussion I mentioned the high fevers and strange symptoms and on examination, he advised that I was “still full of infection” and prescribed extremely strong antibiotics. He questioned my levels of fitness (very good up until this latest ‘episode’) and whether I was still doing everything for myself – Yes (and for everybody else!). He advised that I would need to have a further scan and a bronchoscopy prior to decision on whether there could be surgery. I discovered later, on receiving my medical notes, that the lung was also partially collapsed. The specialist nurse who was present during the meeting made the necessary appointments for me – and even wrote them in my diary. To this day, there are parts of the journey home that I just cannot remember! I do remember vomiting again!

At this point, I did let my friends know the situation and spent the next couple of weeks deciding where to have surgery – and whether this would be a good thing, if it were possible. A trip to Switzerland was beginning to look extremely inviting! The thought of possible imminent death does make one re-evaluate everything – and I had the constant feeling of “But, I haven’t started yet!” I’m ok with the fact of being dead – we’re all going in the same direction, but the manner of dying is very scary! I also had to decide where I would be post-surgery (should it take place) and many of my friends offered to have me stay at their homes to recuperate. A friend in Liverpool, who is a radiologist, researched the best surgeons there on my behalf. I made ‘to do’ lists mentally – sort finances, plan funeral, etc. I received the most touching cards, letters and emails of support and prayers (Sikh, Muslim, Catholic, Jewish, Church of England, etc.) – all denominations were welcomed! My darling niece, Jan, currently living in Pakistan, arranged to fly home in order to spend a few days with me and provided lots of emotional and practical support. My very good friends visited, bringing gifts and my dear friend, Sam, came laden with lots of healthy food – they were all wonderful and amazing.

Me, centre, friends Maureen (l) and Maura (r) – Judith in mirror, taking photograph – June 2015

Following the next scan and (disastrous) bronchoscopy, a further appointment was made for results two weeks later. This was to find out whether surgery would be possible – and a very close friend, Colleen, accompanied me.

Another Shock – Another Diagnosis:

The Consultant’s first question to me was “Are you a gardener?” – I replied that yes, I was a very heavy-duty gardener (one of my passions). The next question was “Do you have a composter?” – I explained that I did have, but no longer. He also asked if I had coughed up brown ‘cauliflower’ shaped plugs – Yes! My friend and I could not understand where these questions were leading – but he then explained that he and his team had discussed the case and considered that I appeared to have the classic signs of Allergic Broncho Pulmonary Aspergillosis (ABPA), a rare condition brought on by allergic reaction to spores – although this did not discount the earlier diagnosis of a tumour – there could be a dual pathology. What brilliant, Ace Medical Detectives! It must be noted that the ‘copycat tumour’ caused by ABPA in the lungs does show on images exactly like a tumour.

I was to have an urgent blood test, was given a prescription of high dosage steroid treatment and further antibiotics – and advised not to commence the medication until I heard the results. With confirmation of ABPA, I would then be under the care of Royal Derby Hospital for the rest of my life. My friend and I were ecstatic – although not ‘out of the woods’ – there was now much more hope, even at this stage – the power of prayer!

Bloods taken, prescription drugs in hand – I arrived home and just a few hours later my niece arrived – happy days! My Consultant rang me that evening to say I had tested positive for ABPA, so much so that it was “off the scale” (greater than 5,000) and aspergillus specific IgE of 59, which is a grade 5 level and extremely high. I was to commence to treatment immediately. As the bronchoscopy had been a failure (on my part – still acute infection at the time) this would have to be repeated, as it would be too risky to wait another six weeks, this time probably under general anaesthetic – which also has its’ risks. He also reminded me that the original diagnosis could not at this stage be discounted and that a further scan would be necessary following six weeks on medication.

Almost immediately commencing the medications, I began to feel relief and was able to manage some sleep – heaven! I still had another six weeks before the next scan, so planned special things to look forward to – lunch with friends, hairdresser’s appointments, manicure sessions and re-joined my local spa for swimming and Jacuzzi – and employed a gardener. I also had my kitchen re-modelled, as I needed to keep myself busy, both physically and mentally. All this time I was well supported by my very good friends and as time passed and I appeared to be responding well to the treatment, I was becoming more confident. During this time my Consultant rang to say, having discussed with the team, they had decided not to put me through another bronchoscopy, but to wait until the next scan, so they too were, obviously, feeling more confident. Also during this time I researched information on ABPA, discovering that there is no cure, but that, hopefully, it could be managed. There are varying types and levels of the condition and, had the steroid treatment not been successful, other drugs are available, but with even more serious side-effects. As the spores are airborne, there is really no avoiding them completely.

Aspergillus & Aspergillosis Website:

“Aspergillosis is an infection caused by the fungus Aspergillus. Aspergillosis describes a large number of diseases involving both infection and growth of fungus as well as allergic responses. Aspergillosis can occur in a variety of organs, both in humans and animals. The most common sites of infection are the respiratory apparatus (lungs, sinuses) and these infections can be:

Invasive (e.g. Invasive Pulmonary Aspergillosis – IPA)

Non-invasive (e.g. Allergic Pulmonary Aspergillosis – ABPA)

Chronic pulmonary and aspergilloma (e.g chronic cavitary, semi- invasive)

Severe asthma with fungal sensitisation (SAFS)”

I could now breathe without pain in my lung and I was not wheezing nor coughing and I was sleeping, although still very tired, sometimes to the point of exhaustion. Six weeks later, I had the next scan and then, whilst waiting for the appointment for the results, found difficulty remaining so positive – at times doubts came creeping in.

Colleen and I went together for the results (as she accompanies me on all appointments). We did not have time to sit down in the consulting room before the Consultant happily advised us “There is only good news!” The latest scan had shown that the ‘copycat tumour’ had disappeared, leaving only minimal scarring. So – I’m no longer dying (well not in the immediate future, anyway)! I was to continue with the treatment on a reducing regime, which I did for a total of six months, with six-weekly IgE level checks and consultations. Following this, I now take inhaled steroids (Clenil Modulite) twice daily. Having responded so well to treatment, it was then decided that this could be reduced to three-monthly appointments. It is possible that I may progress to the next stage, Chronic Aspergillosis, but there does not appear to be a definitive prognosis – just a “wait and watch approach”.

Currently I would say my breathing is the best it has been for decades and at my last consultation it was indicated that the Respiratory Clinic may not be the most appropriate place for me, and that it may be better for me to be seen by an Allergy Specialist.

Living With ABPA:

I am not allowed house-plants and fortunately, my ground floor is not carpeted, so I am able to keep it dust / mite free. As this is an immuno-deficient disease, I take Vitamin C daily, also I am now seriously deficient in Vitamin D, so take that as a supplement, and to counteract the exhaustion/fatigue, I have started taking Vitamin B100. I do have other ‘strange’ symptoms, which I never know whether these are related to the disease or not, but I guess everyone with a specific illness experiences this. I am currently in remission, but should there be any deterioration, my surgery is to contact Derby Hospital immediately. I am often told how well I look (even when I was at my worst health-wise), which does make me feel good, but I think it’s important to remember that looking well, does not equal being well! Due to the steroid treatment I have gained over a stone-and-a-half in weight, which is not easy to lose, but I do take gentle exercise by swimming. I am retired, but continue with my voluntary work with the Agency with which I was employed in Nottingham and with another charity in Derby (although find the need to pace myself) – keeps me busy, I thoroughly enjoy it – and it keeps my mind off my own worries!

My garden – I have to wear a HEPA filter mask when gardening – but don’t have the energy anyway!

I have joined the Aspergillosis Support Group, which is part of the patient support services of the National Aspergillosis Centre at Wythenshawe Hospital (UHSM) Manchester, and has direct access to specialists in many of the fields involved in aspergillosis research and treatment and which is very informative about the condition and provides monthly meetings at Manchester Hospital. Another member, Stuart Armstrong, who is keen to raise awareness, had his story in the Daily Mail on 15 February 2016. 

Read more: www.dailymail.co.uk/health/

I consider that it is important to raise awareness of this serious disease, particularly amongst GPs, as a simple blood test can confirm diagnosis and treatment can commence early. If left untreated, it can cause serious and potentially fatal damage to the lungs. Another member is ‘testing’ wool-filled pillows and duvets as, apparently, house-mites do not like wool – looks like it may be a worthwhile investment!

I survived …. thanks to a caring GP who decided on investigation, the wonderful team at Royal Derby Hospital, the support of my very dear friends, some very influential guardian angels, and an inner strength I wasn’t aware I possessed! My new motto: “You only live twice ….”

Mostly I remain positive in my outlook but, at times, do succumb to being a little ‘down’ – always remembering that no-one has perfect health and that most people have some type of illness with which to deal. I always remind myself that at least I do now have a diagnosis (better than the original one) and could not be in safer hands than the brilliant team of consultants at Royal Derby Hospital.

February 2016