‘I’M STILL STANDING – (ME ‘N ELTON!) by Elizabeth Hutton

… And Breathing! Reasons to be cheerful – thanks to Derby Royal Hospital I finally was given the correct diagnosis and, importantly, excellent treatment from the team of Consultants in the Respiratory Clinic, which means my breathing is the best it’s ever been!  After All This Time!

Problem is – everything else seems to be going wrong!  As the wonderful team at Royal Derby had successfully removed the fungal ball (covering about a third of my lung) and ‘dampened down’ my allergic reaction to spores (no more plugs blocking my bronchi), I fully expected to be back to ‘my normal’.  Didn’t happen – so, considered that as my condition had become critical, it may take quite some time for recovery and exercised patience – but it’s now over twelve months since commencement of treatment.

The fatigue continues, despite balancing keeping myself active with pacing myself, (light) exercise, healthy diet, and intake of numerous vitamins.  I was told at my last appointment that this was not likely to be a symptom (or result) of ABPA but, to my mind, it seems too coincidental.  Having now read up on this, it does appear to be a symptom that many with the condition suffer from – and the Consultants I am seeing are respiratory experts, so this may be outside of their ‘realm’.  Mainly in order to discount this being as a result of another condition, I requested a thyroid test, along with my usual blood tests and the results have been returned satisfactory.  So, I guess I shall have to continue to pace myself and accept the changes.  As I can no longer take care of my fruit shrubs and need to reduce garden maintenance, I’ve now had them removed and the bottom of the garden gravelled.

Asthma or Aspergillosis?

Another reason to be cheerful is my otherwise healthy genes, which have given me the strength to endure all the years without diagnosis / treatment!  Bottom line is, though, if you can’t breathe, little else matters.

Since my teens, I have been told that I have asthma – and this was a question put to me when ABPA was suspected – saying there is a link between diagnosed asthma sufferers and aspergillosis.  Many of the articles I have read support this view.  However, I’ve always doubted that I ever had asthma (the ‘symptoms’ were sporadic and the prescribed inhalers didn’t do much for me) – and now I am convinced of it!  There was never any diagnostic test to prove the case, merely a GP saying that my breathing difficulties were caused by asthma.  I do vaguely remember blowing into a bit of plastic tube, which supposedly measures strength of breath, but I don’t think this could really be called an effective diagnostic tool!

This leads me to believe that the label of ‘asthma’ may be given too freely and that condition, therefore, over-diagnosed – and that had I (and possibly many others) had the opportunity of further, early, investigation, the true diagnosis may have been reached many years before the condition became critical.  So, my laypersons’ advice to those who consider themselves to possibly be at risk of a condition other than asthma, is to seek further investigation.  The earlier a correct diagnosis is made, the less risk of serious and potentially fatal damage to the lungs.

My Love / Hate Relationship with Steroids:

I absolutely love steroids – I felt almost immediate positive results and, after six months high dosage, the fungal ball in my lungs had disappeared (leaving only minimal scarring) – and almost all other symptoms disappeared.  What’s not to love?  ….

Of course, I read all the possible side-effects, which included risk of glaucoma and cataracts, but had no choice in taking the medication.  For many years my eyesight has remained unchanged.  However, last week I had my annual check and, although my eyesight remains unchanged – yes, you’ve guessed it – I have the start of cataracts on both eyes and first indications of glaucoma (both conditions shown on the scan)!  On my optician’s advice (due to my family history of glaucoma, use of steroids and scan indications), I now pay just £6.00 per month for any number of scans throughout the year (should I notice any difference or have concerns), in order to monitor the situation.  At this stage, no surgery or medication is required.  Just have to ‘keep an eye on it’!

Feeling like a true survivor ……