Hi, I’m Jamie and in July 2016 I was diagnosed with thrombotic thrombocytopenic purpura – or TTP for short. At the time I was 44 years of age and in what I thought relatively good health.
Two years on, I am sharing my pre-diagnosis story to help raise awareness of TTP and to emphasise the importance of being self-aware and how quickly life can change.
Five days pre-diagnosis
I made a GP appointment after noticing a persistent rash on my ankles. The doctor examined my ankles and suggested I have purpura, a symptom characterised by red or purple discoloured spots on the skin.
I had a blood test booked in for the following Wednesday. I left with the advice, ‘If you feel worse over the weekend, go to A&E’. I remember thinking I feel fine and it’s my son’s first birthday party on Sunday!
The weekend – pre-diagnosis
On the Saturday I attempted to get up in the morning, but I felt unusually tired and went back to bed. Two hours later I emerged, and although I felt better there was a dull throb in my head.
Sunday was the day of the party. The discoloration on my legs was reaching up on to my shins, and a massive bruise had appeared on my inner thigh. Both myself and my wife were puzzled about how this had appeared. After a busy day of pass the parcel and making tea and coffee, I collapsed onto the sofa. That evening I went to bed thinking that the hue of my skin looked yellow.
Two days pre-diagnosis
Whilst on my way to catching the train to work I had to stop. I was not feeling at all right though worrying I would miss my train, I carried on. The rash had now moved on to my arms, and despite keeping hydrated, my wee was pretty yellow. After wrapping up an afternoon of meetings, I told my boss I was headed back to the doctor. When walking to the station I began to feel wobbly and my chest heavy.
When I returned home I realised the whites of my eyes looked yellow and phoned 111. A nurse on the line arranged an out of hours’ appointment at a local hospital. After dinner I grabbed my things, said goodbye to my wife and drove to the hospital. I waited in A&E, had bloods taken, read my book, texted my wife ‘still waiting’, grabbed a hot chocolate and then heard my name called. I was then admitted. A junior doctor told me my platelets were low – I sort of knew what platelets do, although I was not quite sure what to do with the information.
One day pre-diagnosis
I was wheeled up to a ward and given blood and platelet transfusions. Myself and my wife were told by the haematologist I would be going to University College London Hospital (UCLH) because they thought I had something called TTP. I felt a little scared. I was also told TTP can sometimes be linked to other things, such as cancer, so I felt scared witless and upset – I knew I wasn’t right but I didn’t actually feel that ill!
My first blue light journey was a curious experience. The crew were great – I passed my office at the Elephant and Castle and then upon arriving at UCLH a team of haematologists explained the emergency. I couldn’t believe this was actually happening.
I had a vascular catheter inserted and experienced my first plasma exchange. This went on for hours and I was sick. I was dosed up on steroids and began to feel anxious and think about the ‘what ifs’.
I felt frail and really upset but to help, I wrote down what I was feeling and what I wanted to say to my kids and wife. Not knowing what was going on; what was wrong with me; what I had/didn’t have was all consuming – sleep did not come easily.
It was a relief to get the diagnosis – I then knew they could treat me. This meant exchanging my messed up plasma, full of ruptured red blood cells and broken platelets for fresh plasma. Oh, and stop my immune system destroying crucial enzymes!
The diagnosis was an important step in helping me get better – both physically and mentally. I like to think I am quite resilient. Although, the three weeks of treatment that followed tested that belief. Two years on, I do feel lucky to have the opportunity to share my story – I am an example of what our NHS does when at its best. I dedicate this to my family and our gorgeous baby daughter, born on 19 July 2018.
I am 46, married and have three kids – two boys born pre-TTP and a girl born post-TTP. I love reading – all sorts of genres although I relish reading about other cultures and beliefs. I am quite active – running, cycling, doing strength exercises and generally chasing after our boys. I have recently started to volunteer my services for the TTP Network – little bits at the moment, although as I work in the health sector I am keen to explore how to become a better advocate for patient empowerment organisations. You can find me on Twitter here.