A young patient with an antibiotic resistant infection tells her story

Colin Garner Patient stories

Emily Collins, a young patient with an ESBL E coli infection contacted us for help. Here is her story in her own words.

‘My name is Emily Collins, born on 26th February 1996, a Piscean by default & therein lies the beginning of my journey…Quite literally!

I was born nearly 11 weeks early, so really I should have been a Taurean, dogged & determined by all accounts (my Dad says they’re the best, he would, he’s one). Those though are the qualities I have had to show since the Consultant Urologist sat me down, with my parents, and told me…”you have ESBL with E.coli and there is no cure.”

You may not even know what ESBL is, I’m damn sure I didn’t. I still have to look at my phone when people ask what it stands for. Nothing could have prepared me for the impact that this would have on my life. So just to fill you in, Extended-Spectrum Beta-Lactamases (ESBL) are enzymes produced by certain bacteria which are basically resistant to most of the available antibiotics. This makes ESBL infections so very difficult to treat. The two main bacteria which produce these ESBL’s are Klebsiella & E.coli, the one which I was diagnosed with.

Having been born so premature, it was found that I had scarring on my kidneys. From the age of around 3 years old I was susceptible to Urinary Tract Infections (UTI’s). The answer was always in the form of an antibiotic. When one stopped working, I guess they gave me another, it wasn’t a problem…there seemed to be a never ending list of them.

Under the blanket of care provided by regular visits to Birmingham’s Children Hospital, the recurrent infections would be managed for the next 13 odd years. Fast forward toward the brave new world of adulthood and things seemed to have settled down somewhat, it must have been one of those childhood things…‘So let’s get on with life’ I thought. I had always dreamt of becoming a qualified nurse, I gained a place at university and worked hard at making that dream a reality. Along with my studies I started work at a private care company gaining valuable experience and much needed funds to pay the bills on my new flat.

The recurrent infections returned though and this time with renewed vigour. Again the answer came in the form of prescribed antibiotics although the options seemed to be getting fewer. In the final year of my course, aged 21, things seem to get a whole lot worse. The UTI wasn’t clearing up, my health was at an all time low. Seven different oral antibiotics later and still no let up. Countless doctors’ appointments and visits to A&E only to be told “it’s just a simple water infection”. Then following a number of tests, the first mention of ESBL, after so many weeks of ill health and time off work and university, we finally had an answer…but not really with any explanation!

They ramped up the antibiotics, moving onto intravenously (IV) administered ones. The antibiotics would be given by district nurses at home, but poor veins meant regular trips to A&E waiting to be recanulated time after time and still really with no dramatic impact…and still no explanation!!

Eventually my parents looked at going private to find out what was going on and hopefully get me on the road to recovery. That is when the gravity of this condition was realised. The Urologist explained that we all have these bacteria in our gut and if they stay in there they do good work, but if they get into the rest of your body they cause all sorts of mayhem… “And there is no cure”. We were told to save our money; there was no point in being treated privately. Talk about bomb-shell news.

The infection seemed to get worse over the next week and again we went to Stafford A&E, where we were eventually sent to Stoke. There at Stoke I eventually, after spending nearly two days in a chair, got to see the Consultant Urologist whom we had seen privately. Things progressed and an IV antibiotic that seemed to have the beating of the infection was found. The two weeks I spent in the hospital were the longest and loneliest two weeks of my life, waiting what seemed an eternity to see the consultant each day. There seems a real lack of knowledge from my experience within the hospitals with regards to ESBL infections, no support or information for patients. It really is a mental and physical double whammy.

The upshot of the inability in diagnosing and treating my ESBL effectively is that my dream of a career in nursing was over; the university said I could no longer continue on my course. After such a long-term absence my employer asked for permission to ask my doctors for written assessment of my health and future ability to return to my position. Upon receipt of that report my contract was terminated. The Doctor stated that in his opinion I could never return to that line of work…Boom!.. Game over on all counts…No career, no job, no money and no real prospects.

Through the support of family and friends, some much appreciated advice from ANTRUK along the way and that dogged determination I spoke of at the start of my story, I am rebuilding my life and reassessing my life goals. The most important thing here is that we raise the issue of ESBL’s and other antibiotic resistant infections.

This is a ticking time bomb, antibiotic resistance is going to become a massive problem in the very near future unless challenged. Research and so investment in new medicines is a matter of urgency and that is why I have chosen to share my story with you. It’s a window into the future unless we do something about it today’.

Emily Collins