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May 22, 2019

Ann’s Story

Sitting on the plane yesterday, flying back from Iraq, I vividly recalled a similar, but much longer journey exactly one year before. I am a TTP survivor. I had been helping facilitate a workshop in Guatemala as part of my assignment as a Humanitarian Aid worker. I had never really shaken off the bad cough I had had from a number of weeks previously when I had been helping with a similar workshop in India.

Despite the amazingly beautiful location and the lure of interesting people and workshop material I felt too wiped out to get out of bed one morning and decided to stay put and try and sleep it off.

Emerging a few hours later , I managed to shower, dress and sneak in to the back of the session already well underway. The venue was stunning. A beautiful flagstoned convent full of sunlit, flower filled courtyards with archways and vaulted ceilings. Surrounded by mountains, Antigua was beautiful and I was looking forward to spend a few days exploring once the event had finished.

Sitting at the back listening, I was feeling decidedly odd. It was hard to describe. I was lightheaded, a bit woozy, but the overarching feeling was exhaustion. Feeling a bit feint and not wanting to cause a commotion, I slipped out the hall and back to my room to crash.

For the next few days I stayed put. The intensity of my headache increased with every chest wrenching cough, I became shivery and achy. I started to throw up periodically. Fortunately one of the participants was a doctor and came and checked me out and prescribed me some antibiotics.

As the workshop drew to a close I knew I would need to find the energy to move on. One of my colleagues and friend made me promise to go to a doctor when I got home despite my protests as she said that it wasn’t normal!

Fortunately, an old friend, was now living in Guatemala City and was coming down to Antigua for a day with friends. She collected me in her car and we spent a gentle day seeing some sights between sitting in scenic cafes to rest, before depositing me at my air b’n’ b. There I slept for most of the next 48 hours, through the night and day. I emerged for a few hours early the next morning, determined not to miss out completely on visiting such an amazing city. Camera in hand and unshowered (far too exhausted to do that!) I ventured out at 6 am for a gentle stroll through the cool, empty streets to feed my desire to see the colourful and historic city and to take some photos. Two hours later I was back in bed sleeping again, exhausted but satisfied.

I slept in the back of the car on my way to Guatemala City, and again when we arrived at my friends flat. After much debate we contacted the travel insurance company in hopes that they could help establish if I was well enough to fly and help facilitate me in getting home, recognising I would probably need to lay down during the journey. They were of little help, first saying that I needed to be symptom free for 24 hours before flying and then saying they would get a doctor to me which never materialised. As the hours passed and our flight loomed, I felt a strong conviction that I should just get on the plane and get home. This wasn’t going to go away quickly.

The flights were long and tedious. I was nearly taken off one, as I threw up just as we were about to board. Fortunately the paramedics were happy that it was probably a response to the antibiotics I was taking and let me go. I did my best at each stage to try and look alert and well so that I could board and then crashed out on the seats during both flights and layovers.

Back in the UK, the taxi driver took pity on me and carried my bags to my flat which I then dumped in the hall before crashing on my bed. Several hours later I woke long enough to change out of my jeans and into PJs and plug in my phone. Late in the afternoon I dragged myself out of bed to answer a call from my sister in law. My head throbbed, I felt terrible. Honouring my promise to my friend, I phoned the doctor. Despite him initially seeming slightly irritated that I had left it late in the day, something I said must have triggered a response in him that made him feel that he needed to see me and he informed me he would come over straight after surgery.

He was kind. I fully expected to be told I had a nasty virus and to rest, drink plenty of fluids and take paracetamol . But after an examination and a discussion he called an ambulance and ushered me off to hospital, even packing a bag for me!

It felt a little over dramatic, but I was grateful that I no longer had to fend for myself. Laying on the bed in the draughty corridor of cubicles, hooked up to fluids and antibiotics I felt a bit of a fraud as I already felt somewhat brighter. Around me were others moaning and groaning and looking really ill. I was convinced I would soon be sent on my way. Instead I was periodically visited by concerned looking staff who would crouch down beside me and in gentle, hushed tones, would tell me that they didn’t know what was wrong but that I was very sick. I almost laughed as I was fully alert, just feeling a bit rubbish. It felt surreal.They would soon realise! They transferred me up to the critical care unit. Again I smiled, totally believing that I was about to be sent home.

At this point I was told again that I was seriously ill but they didn’t know what was wrong and they were getting me transferred up to a London hospital. I was asked if I had been bitten by a snake! When I said no, they asked if they could check anyway which they did. I had the indignity of having to change into a hospital gown and having a catheter inserted ( standard protocol I understand) and was whisked off in the back of an ambulance.

10 minutes into the chilly journey I was aware of a blue flashing light outside, asking the ambulance crew, it appeared the sirens and lights were for us…I was bemused just a little bit excited!

If you are reading this story, it’s probably because you have either been through the experience or know someone who has, and will know already what happens next!

UCLH staff were amazing. I was promptly diagnosed and treated for TTP. It takes a while to sink in and even after I was told and hooked up to all kinds of gadgets I still don’t think I registered I was actually really sick. My platelets were less than 4 and I was told at various points that it was a really good job I got on that plane when I did, otherwise it could have been a very different outcome. Although flying was not without considerable risk … apparently.

You remember odd things. I remember being thrilled at my amazing view from my private room on the 16th floor of the hospital. The BT tower became my trusty friend a short distance away wishing me good morning each day. I remember being asked random questions every few hours as they did the regular tests and never ever getting the date right. I was not impressed that I was changed into a disgustingly pink hospital gown. Why pink? I remember being given diuretics late one night to get rid of the fluid that had made me swell up, soliciting lots of references and pictures of Eastern European shot putters being WhatsApped to me by my kind friends. I had thought it could have been better timed as I spent the rest of the night needing to pee every half hour!

But as the days passed with the rounds of plasma exchanges, drugs, blood tests, and rituximab, I stabilised. I was touched by the kindness of the staff and the brief insights into some of their lives. The lovely nurse who stood with me at the window in the middle of a sleepless night watching the twinkling lights of the world outside describing her time at the Brit school for performing arts before becoming a nurse, the nursing assistant proudly showing me pictures of his small son’s birthday party, the TTP nurse sitting on my bed explaining again how TTP worked so that I could explain it to others and the the host of doctors bustling in and out doing their stuff to get me well!

I am grateful to them all for their kindness and their competence. I continue to be incredibly thankful to live in a country with the NHS there to look after me in my time of need.

I freaked out only once, and that was quietly hiding in the bathroom behind a locked door…the only place of private refuge. Not from the procedures or diagnosis, but from suddenly being told I was being discharged after only 10 days having previously been told I would be in hospital for a minimum of 2-3 weeks. I wasn’t ready, I didn’t feel well enough or strong enough to face the world on my own. It took a while to psyche myself up for it. Having no idea how things worked I asked in slight desperation for a loan of some money from one of my visitors thinking I would have to somehow catch a train home!

So a year on to the very day I was diagnosed, I have flown back home from a deployment in Iraq for a check up at UCLH. I am pleased to report my bloods are all good. I am a humanitarian aid worker and a TTP survivor, working with people affected by conflict, disaster or just living in poverty. it is a huge privilege to travel the world and meet so many amazing , courageous people affected by crisis and do even something small to help bring them hope and support them on the path to recovery. I am blessed to be born with a British Passport, have access to incredible medical care and a good education and I hope I don’t take that for granted.

It’s my passion and it’s my life. I was so worried that TTP would put an end to this. It’s been a rocky road to recovery, the exhaustion, the associated autoimmune issues I have subsequently developed but I am back!

My year has been a roller coaster ride of emotions:

  • In April 2018 I was first diagnosed.
  • In May my friends rallied around, took me in and looked after me after I was released from hospital.
  • By June I was at home and tentatively started to head back to work part time • July saw my first attempt at a holiday …a road trip to Wales.
  • August – I was faced with a significant milestone…stepping on a plane again, to Indonesia , then the Ukraine for work ( I remember the plane doors closing and thinking “what on earth was I doing?”.
  • In September I managed (just about) to do the TTP Bridgathon….although the last bridge almost killed me and I had to lay down in the grass for a good hour before being able to face the train journey home!
  • In October I had a trip to China aborted as I ended up back in hospital temporarily with a blood clot. (TTP still well in remission) – hello again BT tower!
  • October/ November – an amazing trip to host a workshop in the foothills of the Himalayas and Kathmandu in Nepal (significantly helped by a short course of steroids!).
  • By December -after a second aborted trip to China, I was temporarily back in hospital with low neutrophils and and an infection or virus, instead of flying to Iraq (but again TTP still solidly in remission.)
  • In January 2019 I was finally fit to travel and headed off to Iraq! And I’m still there.

Yes I sometimes get exhausted, sometimes I feel unwell and everything hurts but life is too short to hide away and let the after effects of TTP stop me experiencing the adventure called life!

I’ve had some truly dark moments when I have felt so bad and so helpless that I have perhaps wished I hadn’t survived… usually in those sleepless early hours of the morning. I’m nowhere near back to where I was pre TTP, but if I reflect at where I have come from, I’m streets ahead of where I was a year ago. I am regularly walking 4 or 5 kms whereas I was struggling to make it home from the station, I am back travelling, working in a high pressured job, I have climbed the millennium dome in London, and just starting climbing the odd small mountain in the beautiful Kurdish countryside . My friend came home one day and was horrified to find me playing a wild game of British Bulldog with my energetic God children rather too early on in my recovery! Sometimes I can hardly do anything as the exhaustion and pain and feeling of general unwellness sweeps over me, but it’s not so bad vegging out on the sofa watching films now and again….and as a seasoned, wise, fellow TTPer said…it’s early days…it’s only been a year! Who knows what the future holds.

My thanks to my lovely family, friends and colleagues who have supported me on my journey To the doctor that when asked…do you think I will be able to travel again…replied matter of factly “why wouldn’t you be able to?” Then patched me up and sent me off.

To the research doctor who kindly furnished me with facts and stats that helped me to draw my own conclusions and encouraged me to push myself, confirming I may get exhausted but would come to no harm and even do me good.

To the doctor that was touchingly thrilled to announce that I was finally fit to travel, confessing he was glad it was him giving me the good news having felt so bad at having to stop me going on two trips, one of which involved admitting me to hospital again!

To the lovely TTP nurses who patiently taught this coward to inject herself and always had a cheery word of encouragement and interest.

And to all the amazing, caring, hardworking staff at UCLH, my thanks!