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July 3, 2018

Jamie’s Story

Hi, my name is Jamie and I was diagnosed with TTP in July 2016. At the time I was 44 years of age and in what I thought relatively good health.

I first noticed discolouration to my feet and legs which at first I thought was the beginnings of an infection in my eczema on my ankles.  Similar symptoms had occurred in previous flare ups of my eczema and so I booked a GP appointment with that in mind.

It was a Friday evening in July, the GP was attentive and identified it as purpura, booked me in for blood tests 5 days later and said if I felt any different over the weekend to go to A&E. I had a busy weekend as it was my youngest son’s first birthday party and whilst I felt tired I didn’t feel poorly.  However, by Monday morning I was wondering whether to go to work – I did, though by now I noticed the distinctive marks on my arms and back of my hands. I left work saying to my boss that I might go back to the doctor.

It was a hot summer evening and untypically I felt dizzy and out of breath walking to the London station to go home. When I got home, I looked in the mirror and knew something wasn’t right. The whites of my eyes were no longer white, more yellow a little like the hue of my skin. I phoned the out of hours doctor; drove to the hospital in Dartford; had tests; went to A&E for more tests; and got admitted. The following morning I was wheeled up to a ward where I received blood and the haematologists told me that they suspected I had TTP and was being transferred to UCLH in London! I wouldn’t get back home for another two and a half weeks, though I thank my lucky stars that I did.

The blue light journey was scary though as I still felt okay it was a curiously exciting experience. Arriving at UCLH it dawned on me what was going on and needless to say any other feelings were soon replaced with wave after wave of anxiety. Later that evening I had my first vascular catheter inserted and underwent the first of multiple plasma exchanges.

I was sick during my first exchange though a drip and/or crunching calcium tablets seemed to work thereon in. That first night was the toughest. Dosed up on steroids; anxious and sensing my frailty I poured out my feelings in a lengthy written account –  not knowing what was going on; what I had; what I didn’t have was all consuming. It helped a little though sleep did not come easily.

The blood tests that came back on the Wednesday morning confirmed the TTP. I could now focus, well a little bit better on what was needed. I consented to the Hercules trial and along with the blood tests; plasma exchanges; and trial injections succumbed to the routine of hospital life. I can’t say I looked forward to the removal of the catheters or their insertion though the experience was short and done so expertly that on reflection, afterwards, the anxiety leading up to each procedure felt misplaced.

I got used to the lengthy plasma exchanges and got obsessed with platelet counts which slowly and surely rose. My adamts 13 recovered and the rituximab seemed to do it’s job. The Docs, Nurses and Health care assistants were great and tended to me with great care and empathy. I feel lucky that I maintained my appetite and I looked forward to the meals, especially the puddings. However, despite this I still noticeably lost weight.

There were ups and downs whilst I was in the hospital though my visitors and importantly my family kept my spirits up. Being away from my wife and kids was the worst and whilst everyone rallied around and my folks came down from Yorkshire, I know it was a difficult time for them.

For me there were some long days, though I never got bored – I had my books; James Bond dvds; and the most amazing views from my room in UCLH tower. This inspired me to sketch scenes of West London, including a street scape of Euston road as it reaches up to Regent’s Park to the faraway Wembley stadium.

When the Docs stopped the exchanges I felt a little lost as my routine was broken – I even missed the lift and underground chair run to the Macmillan centre day. The day my platelets broke the 150 mark was an emotional day. The discharge took most of the day and the ride home through the city and down the A2 to Kent was unforgettable.

Getting home to my family was wonderful and writing this reminds me of how precious that time felt to me. Two days later me, my wife and our youngest were making the trip back into London for my weekly check-up and to replenish my trial drug or placebo. Yes, every day I was still administering my jab to the stomach.

I was signed off work for 6 weeks post-discharge and used that time to get my strength back though I kept in touch with the team – this was my longest time away from work for decades. This happened to fall during the summer holidays though with my wife back to work after maternity leave I had help with looking after the kids. We took time out to take the kids to the seaside and like the Victorians I recuperated on sea air and swimming in the sea.

Almost 2 years on, my platelets look to have found their level and my adamts 13 levels remains good; I feel fit and most days I don’t think about that acute episode. I am comfortable with that though I also think it is healthy to reflect. When I do I recognise how lucky I am to live at a time when our NHS and the people caring for us are able to treat rare diseases such as TTP. Here’s hoping for further advances over the next 70 years of the NHS. I owe a debt of gratitude to the fantastic clinicians and staff at Darenth hospital and most importantly the fantastic Haematology team at University College London Hospital who nursed me back to health.

I wear a TTP network wristband and if people ask about it, I share my experience mainly as I now know that you never judge a book by its cover. Recently, I volunteered my services to support the work of the TTP network and I hope that I can do my bit to give something back.

I am sharing my story as it seemed the right thing to do – to help others know they are not alone with their TTP journey and to help inform. I also wanted to say thank you to my family and friends – I live my life for my family and every day I thank my lucky stars that I have them.