Hear Emily’s Story About What it is Like to Have a Chronic Antibiotic Resistant Infection

Colin Garner Uncategorised 2 Comments

We read about antibiotic resistance in the media and watch programmes on TV about the problem. Behind every antibiotic resistant infection statistic there is a real person. Watch Emily’s story about what it means to actually have an resistant infection and why we need new antibiotics NOW. Emily gave this most moving account of her ESBL infection and we have uploaded this to our Youtube channel.  Emily wants you to help us raise lots of money. Support her fiancee Ben when he runs the 2016 Virgin Money London Marathon.

If you have a story to tell as a patient with an antibiotic resistant infection we would like to hear from you.

Emily writes below. These are her actual words that she provided to us; she has given us permission to use them.

“I’m a young mum, a fiancé, a daughter, a granddaughter and have had the struggle of living with a resistance to antibiotics for nearly 8 years of my life. Affecting each and every person around me.

Before I was told of my resistant strain I was naive to the fact that antibiotics may not work on me. This is something I never thought I would have to think about, let alone worry about.

When it comes to my medical records it is pretty impressive for someone who has only just reached there 23rd birthday. Going back many years I was diagnosed with kidney reflux. This is something that runs in my family. Most of the women in my family only have one kidney and have always suffered from UTIs. I remember being in a lot of pain as a child and going in to early teens, this is when the hospital started investigating into my pain. I had mirror surgery’s and scans over the course of a few years for them to find nothing but an odd shaped uterus and a bladder infection. I was then diagnosed with painful bladder syndrome to put a diagnosis to my abdominal pain.

But it didn’t stop there..

In 2010 I got a call from my doctor, she sounded stressed, I was worried. She told me that a bug has grown in my urine culture. It was called ESBL ECOLI and has caused resistance to the antibiotics. Because of my symptoms she admitted me to hospital. I didn’t think much of it until the doctors put me in an isolated room and everybody that came into my room was wearing gowns and masks. I felt like I had the plague. Still not fully understanding what was fully going on, me and my family started to get worried. After some fluids and some IV antibiosis I was sent on my way.

Over the years getting admitted into hospital when I got UTI seemed to be a routine and it still never sunk in until my doctor explained me to how serious it really was. Each time I get a UTI it will cause my sensitivity chart to change. So only certain antibiotics will get rid of my infections. If not treated correctly or quick enough this can cause the infection to get to my kidneys and even cause septicemia or death. This was a massive shock to the system as i did not ever think that antibiotics would just stop working on me!.. It really hit me in the face when I saw my sensitivity chart decrease in sensitivity more and more over the years.

The hardest time was when I fell pregnant. I had an attack when I was about 5 months pregnant and then again when I was 8 months. I also had strep b infection in my urine, which could of caused danger to my baby. If the antibiotics they give me to stop the infection getting to my baby doesn’t work, what happens then?.. We had many consultations and microbiologist appointments; the antibiotic that would be guaranteed to work would be on stand by at the hospital in case I went in to labor. I mean who wouldn’t want to here that? But at the time that was music to my ears knowing we were prepared. The decision was also made that my son would go on antibiotics as soon as he was born for percussion. This was the scariest time of my life. Not only is this infection effecting my health it could effect my unborn child. This was a hard time for me and partner but with all odds against us, we had a safe arrival of a baby boy on the 23rd of July 2013. He was delivered via a planned c section at 37 weeks. This was decided as the safest option for us.

Since becoming a mum there is nothing scarier then the thought of not being there for your child as they grow up. With every sting and every pain, my heart sinks at the thought of how many antibiotics I have this time. What happens when my sensitivity chart says resistant to all? Or its not picked up quick enough?.. What happens to me? What will happen to my son?..

When I get an attack it wipes me out!, I feel sick all the time, and I sleep and sleep. I go pale and the pain when I try and go for to the toilet is horrendous! When an I get a UTI which is a lot! At least once a month I have to take time off work to rest as I get breathless and am in so much pain. This is hardest when I see my toddler running around and all I want to do is run after him and play.

I’m a young mum that is fighting every day to make sure this bug stays away. I will do everything in my power to keep bugs like this away from my boy and the future generation. This is not something that will get better unless action is taken. New antibiotics are needed to treat bugs like mine and treat bugs that can stop life threating illnesses all over the globe.

If we cant treat them, what will that mean for us?

What will that mean for our children?

Im praying for an answer to these questions, and for my case, soon.”

Editor writes

ESBL ECOLI = Extended spectrum beta lactamase resistant Escherichia Coli one of  several antibiotic resistant bacteria.

UTI = Urinary tract infection