My story – medical
I am 75 and I am writing this in the hope of encouraging new patients to believe that diagnoses which sound awful might not be as bad as they sound. So keep reading past the beginning!
ABPA and asthma (formerly included bronchiectasis, but this has disappeared from list)
Large granular lymphocytic leukaemia (results in neutropenia and low immunity)
Probable single vessel ischaemic disease.
and, on the way,: 2 sinus ops (Polyps and antroscopies), chronic cystitis and 2 attacks of pyelitis – kidney scan shows bifid ureter, a squint (obvious only to opticians, but I use only one eye at a time), two cataract ops, and hearing aids – and 3 healthy babies. My genes must be a bit odd, yet I have always recovered well.
Born 1937, wartime rationing of all kinds. Parents well, but both had allergies.
Tonsils removed at age 5 – then the fashion for any catarrhal child, even in the war! Made me worse not better, and missed most of first year’s schooling and long periods every winter until I was about 13.
I remember just 3 serious wheezy attacks as a child – never diagnosed. Coughed a lot every winter, but don’t remember anything coming up – perhaps children just swallow it all.
1955: work in an office, awful place, old gas heaters, no ventilation, almost everyone except me a chain smoker. Felt well, but now know first attack of ABPA was in 1956. Totally blocked nose and sinus; eventually consulted doctor who gave me some un-named white pills. Then one day I started to blow my nose – and blew and blew- a mass of sticky brown muck. All cleared within a couple of hours and I thought no more of it – until years later.
1962: We went to work in Nigeria (teaching). Based in a small town, very basic amenities by any Western standard; – paraffin fridge, calor gas cooker and oil lights, tap water not always available. Local ‘hospital’ just a clinic – very little equipment and just one doctor covering a very large area. Climate: 6 months very hot, wet, and humid, 6 months exceedingly dry and dusty – cool at night and very hot (100Fplus) by day. 1964 and 1966: birth of two sons – both well and breastfed for 12 months each. Beautiful country, lovely people, welcoming us as teachers they needed. All sounds idyllic.
But Independence had led to precarious government, which descended into violence – government coups, violence in the villages all around, and later the Biafran civil war – the stuff of night-mares. Told to leave home, and placed in house whose bedroom had large cracks in the wooden floorboards and an odd smell. We were sleeping over an old store-room full of a large colony of bats and their accumulated droppings!!
Biafran army retreated from our home area, we returned to home and school.. October 1967, 2nd baby aged 9 months developed tummy bug – good job I was still breastfeeding. I got tired, developed a cough – which got worse, and worse…… Did not realise how ill I was even though I was soon coughing non-stop for an hour or even two at a time, but nothing came up. No x-ray or blood tests available locally; Dr gave me asthma pills – didn’t help much.
Jan 1968: Returned to very cold UK where I quickly ran a fever; x-ray looked like pneumonia – or TB – or cancer…. In hospital a clever chest physician did bronchospy (with early rigid bronchoscope!), hooked out some brown muck – and was excited when lab diagnosed aspergillosis. Treatment: lying in PD position (head lower than body) and 15mg (I think) daily steroids. Also a green dye to be sprayed down my throat with a scent spray!!
Something worked – after 7 weeks of futile hours of coughing on my tipped up bed, I started to cough brown sticky plugs – long ropes of it, a beaker full in an afternoon when I was alone at home with no phone. At last I could breathe. Consultant appointment due in a couple of days – had nothing moved by then I would have been sent to Oxford for lung resection, now unnecessary. I was young (31) and quickly recovered to normal life.
Consultant warned me that Aspergillosis would recur, especially in later life, but I felt well, we settled, bought a house and had a third baby.
The rest of the story will be familiar to many who had ABPA so long ago. Kind and well-meaning GP had no experience of Aspergillosis, nor did the junior hospital doctors. I owe a great deal to the consultant who diagnosed it, but I did not get to see him very often. I caught all our children’s colds, and coughed and coughed. GP gave me antibiotic for every attack, but neither of us realised that I probably had ABPA flare-ups, so I got no steroids. I think doctors’ training in the 60’s and 70’s warned against over-prescription of steroids, also taught that reassuring the patient was important – but of course reassurance was useless when he did not know anything about ABPA. He was reluctant to give me steroids even when I thought I had a flare-up; in the very worst attack, a registrar at the hospital couldn’t find any sign on my x-ray, called me a ‘fraud’ and gave me a huge bottle of codeine linctus for my cough! On that occasion, I finally got the steroids by making a fuss, then after 10 days futile coughing, spent one whole evening coughing non-stop before I produced a huge plug (with intense pain), followed by a lot more fungal mass. I must have split a vein and coughed blood all the following day, as well as being very sore. My husband finally persuaded GP that I needed hospital – where they tested for all sorts of things like whooping cough! Only at 6 weeks check-up did registrar tell me the obvious – it had been ABPA! A positive test on the one bit I had coughed up at the beginning had been misfiled!
Such was the treatment by well-meaning and good doctors before they knew anything about ABPA, and had nothing written to refer to (nor did I).
Similarly, fungus in my sinus was not immediately recognised, but I was finally referred to a good ENT surgeon, who removed nasal polyps and opened up the sinuses – removing all sinus problems for good.
Youth, basic good health and lifestyle kept me going (though always very tired) until I asked for a second opinion and got referred to the Brompton in 1990. This transformed my life in some ways. Scan on first visit showed bronchiectasis, and plugs around my lungs. I was taught physio – breathing, and huffing – put on permanent steroids, and best of all, the report back to my GP proved that I had neither been hysterical nor imagining illness; I was at last understood, and could get appropriate treatment when I needed it. On daily prednisolone, the annual autumn and spring flare-ups largely disappeared, but every cold led to an acute flare-up.
1995: 3 successive virus infections. In-patient at Brompton – ciproxin and 40mg prednisolone, continued at home for several weeks. So weak I could hardly climb stairs or walk straight; strained both Achilles tendons (always take care when on ciproxin combined with high dose steroids); a friend took me out in a wheelchair; I wondered about my future.
1996: I was at last improving, able to walk again, and sleeping better. Routine appointment at the Brompton; registrar asked about general health and I reported a tummy bug that had taken a long time to clear up; immediate blood test. He phoned next morning – don’t worry but…
Superb haematologist at local hospital did a lot of tests – found a rare leukaemia (see top), which, she said, combined with the fairly rare ABPA, must be unique – yet I was feeling relatively well! Long discussion about possible treatment – all postponed as I felt well.
Since then I have to take any feverish infection seriously, and go into hospital for IV antibiotics if fever high (usually infections are in lungs, or in wounds in my tissue-thin skin). ABPA is not worse, but as I aged, I found the coughing traumatic. I had had to move from the Brompton back to Swindon in 2000. I finally got itraconazole in 2010 from a keen younger Consultant in the local hospital. This has made a huge difference – I still cough, but not so violently nor in such prolonged spells.
I have avoided crowds and public transport in winter ever since the 1995 illness, and amazingly at 75, I now have quite good quality of life. I get very tired and shaky, and have to pace myself both daily and weekly. Skin is very fragile, hair now thin, voice often croaky and sleep often poor. But I can still walk 4 miles or so on a good day, climb all our steep hills (very slowly) and generally enjoy life. Angina can be a nuisance, but I declined angiogram, afraid a vein might be punctured, or infection introduced. Very fortunate to still have my supportive husband and to enjoy simple things – we have not been abroad since return from Nigeria; very local holidays can be just as interesting.
For any interested in facts and figures:
IgE at last count: 11,000. RAST to aspergillosis 4. Neutrophils (the white blood cells most affected by the leukaemia) vary – as low as 0.3 a couple of years ago, and now around 1.0 (I think 2.5 is normal).
What made me ill? – tropical climate? stress of life surrounded by violence and civil war? bat droppings? – I guess I am predisposed genetically to get ABPA, but I also have ‘good’ genes from a very long-lived mother. Did the leukaemia come from all the scans and x-rays I’ve had? Or the result of the stress of the 1995 illness? I’ll never know. Current new patients can be grateful that gone are the days of a scent-spray full of green dye, useless x-rays, and doctors without the internet. The world has changed and I am very grateful for all the research which keeps me going, and to very many NHS staff for all their care.
What have I learned?
Stress is inevitable – avoid it when you can, or recognise and try to deal with it.
Take threatening symptoms seriously, but don’t panic. Always take medication prescribed –unless very good reason not to – then tell your medic.
Avoid all other infections when you can.
Keep away from massive presence of damp and mould, (like the compost heap) but don’t worry about the odd bit.
Make a friend of your GP – who can help you understand your problems and make important decisions.
Eat a healthy diet – plenty of fruit and veg, (I haven’t avoided any food).
When ill, I fend off depression by planning some useful activity each day, however small, and as soon as possible, walk – just as far as the next house, or the end of the Close, or as far as I can, doing a little more each day.
And good wishes to all who suffer – I’ve reached a happy 75 after all that – maybe you will too.