World Tuberculosis Day: My Story
By Tilly Rose
This is a day pretty close to home for me. As lots of you who have been following for a while know, from the aged of 1023 I lived with 13 years of undiagnosed active Tuberculosis. In that time I was offered a place and graduated from Oxford University.
This year, my story (and my mum's who also had it for 18 years) was published in the foreword to the World Journal for Clinical Tuberculosis. The book arrived on my doorstep this week and it certainly felt like validation for all my family have been through, to see it printed in this large hardback book which will be read by medics from all around the world.
I hope my journey inspires you to see that whatever challenges you face, self-belief and hard work can go a really long way. I achieved, despite all the odds, and so can you!
Here are some extracts from our published story:
"This is the story of one overprotective mother and one lazy teenager. That 'overprotective' mother turned out to be right and that 'lazy teenager' went on to study English Literature and Language at Oxford University. Both lived with undiagnosed TB for over 18 years."
"I had always been a happy and healthy child. My mum was diagnosed with coeliac disease when she was 20 but this was 17 years on and it was very much under control. My grandparents, on my father's side, owned dairy farms in Ireland and it was on a visit to County Kerry that our lives changed. We were given a jug of warm, creamy milk to put on our cornflakes. Looking back now, it seems so obvious but then it was nothing out of the ordinary."
"Aged 10 I came home from school and collapsed in the hallway with what I can only describe as extreme weakness, a feeling I came to recognise as the years progressed...later that day I was admitted to hospital with pneumonia."
"The following year my appendix burst."
"Aged 14 the situation worsened. I lost a stone in a month, my appetite went and never returned, then the shivers and sweats began and only when I began to feel really ill, did the dry cough emerge. This was a pattern which repeated itself over the next 8 years; that dry cough used to send us into panic mode."
"Then my tummy began to grow, a bit of bloating to start with...but by 16 I was regularly being asked by doctors whether I was, in fact, pregnant."
"The consultants concluded the only option was a laproscopy...in the middle of the operation the surgeon came out and told my parents he was going to have to resect part of my terminal ileum which was non-functioning."
"At the start of this horrible journey of ill health, one day in the Easter holidays aged 10, when I was recovering from my burst appendix, my parents had taken me for a day out in Oxford. After stumbling across a sign outside Balliol College inviting the public to look around, I made up my mind I was going to Oxford University. In the years which followed, my academics got me through. When everything else was so beyond my control, studying became my unwavering focus. I taught myself from hospital and home and while, over time, other aspects of my life became more limited, studying was the one thing I could do 'from the sofa'. Oxford University remained the goal. You can, therefore, imagine the frustration and upset when doctors would suggest I was a 'lazy teenager', who needed to 'get of the sofa' and 'do some exercise' and that I must stop labelling myself as 'ill'. This couldn't have been further from the truth. All I wanted was to be 'normal'."
"Eventually all different parts of my body were being affected (gastro, respiratory, dermatology, rheumatology, endocrinology, blood pressure, sleep)...each department was trying to treat the symptoms but not the cause."
"By this stage I hardly went to school, but somehow I managed to achieve my grades and was offered a place to read English Literature and Language at Jesus College, Oxford University. The next problem: how was I going to obtain a degree at the top university in the world, when my life was becoming increasingly restricted to lying on the sofa? Well, I was given a ground floor room (stairs meant pneumonia), the dining hall was just a few steps away and a member of staff delivered books to my door. However, my worst fear was being labelled and I so desperately wanted to take part in all that Oxford had to offer. It was a constant toss up - is this night out worth being ill for? Is this party worth ending up in hospital for?
Prophylactic antibiotics were now a way of life but even those weren't preventing recurrent infections. It was in my second year of uni that things hit rock bottom. I was admitted to hospital with yet another bout on pneumonia and given 2 weeks on IV meropenem. The problem was the antibiotics weren't as effective as they once were and this infection returned within a few days. This meant a further week of Ivs and 6 weeks out of an 8-week term, off uni. I'd surpassed the residency rule at Oxford and was told I needed to take a year out to focus on getting better. I knew I wasn't getting better, only worse; what difference would a year make? My GP had referred me to the Mayo Clinic and it was around this time I was supposed to be going. This was our final resort but I was turned down, deemed too ill to travel. The doctors in the UK told me every test had been done. They had stopped looking for the cause; it was now a case of palliative care. Whatever it was, was going to kill me."
"On that final admission, my mum insisted the doctors did more tests. When I was discharged, the consultant called us at home. She had requested a QuantiFERON Gold TB blood test and was calling up to say it had come back positive. It was the first test in 12 years with a positive result."
"In total we went to 15 hospitals and were seen by over 30 consultants. We describe this illness as a cruel one, for our journey was not just a case of being ill, the way the TB manifested itself meant it was a battle; a battle to be listened to, a battle to be believed and eventually a battle to be treated.
My mum's story was equally horrendous and it was eventually under an amazing Professor in Liverpool that we both began 18 months of TB treatment.
"The picture is now very different, I obtained my Oxford degree (albeit in 4 rather than 3 years) and have set up my own business. My mum has returned to work and has an active social life. We eat, we exercise and most importantly, we no longer spend our lives on the sofa."
Our Professor noted in the Preface to the book: "Not since the second edition have we had a patient contribution to the book and it is high time we did. Their experience of being misdiagnosed and fobbed off by a host of medical professionals with supposed expertise in Tuberculosis is salutary. All workers in the field would do well to read their stories."
Our full story is available in Clinical Tuberculosis Sixth Edition.
*Unfortunately, as we ended up having to be treated with second line drugs, there was always a chance the TB could return. In December I, sadly, had to restart TB treatment. I am now using my Instagram @thattillyrose to open up about my life with Tuberculosis and Adrenal Insufficiency.