The story of Harriet
It started with a big bruise on my hip that I hadn’t noticed getting, then a headache that kept me awake and then pins and needles in my cheek one evening whilst I desperatly glugged a large, post work gin hoping it would help me sleep through the 3 day headache. I went to my GP who suggested it was a stress headache.
The next day walking my dog alone whilst my husband was at work for a Saturday morning shift, the whole left side of my body got pins and needles and my face went numb. My feet felt huge and alien. I still don’t know how they walked themselves back home and into my bed where I began to feel more and more like I would throw up. My legs started to shake and bounce around on the bed (which I now know was blood clots bursting). I thought it was a panic attack (I’ve never had one before) and dialled my husband. I remember his voice: “I can’t really talk right now darlin I’m at work…” He waited and heard nothing but crying from me. I don’t remember crying. I remember thinking the words and willing them out my mouth but nothing came out. “You ok? What’s wrong?” After nothing but silence and tears from me, my husband left work. It didn’t take him long after seeing me before dialling 111, carrying me to the car and driving me to the out of hours Dr’s office. The Dr did a few checks including asking me to lift my arms above my head and legs off the floor… which to my surprise, I couldn’t.
Next stop A&E where my condition worsened but my illness remained a mystery. MRI scans showed nothing but the blood tests indicated almost no oxygen in my blood which led to a transfusion of plasma. It fixed all my stoke like symptoms instantly. I felt perfectly well and worried I was making a fuss about nothing. Although..I’ve been told I lied continuously at this point which I don’t remember doing but as there wasn’t much oxygen in my blood my brain, it wasn’t functioning well..se of those lies were quite funny in heindsight! An ambulance took me from hospital in Cornwall to a specialist ICU at the Bristol Royal Infirmary hospital as by this point they suspected a very rare disease called TTP. That was day 1 of the next month which I spent in hospital.
My treatments included 4 hours a day on a plasma exchange machine which filtered my blood and replaced it donated plasma. My body bruised with every touch due to my condition and I was black and blue. I had treatments with a lukemia drug called retuximub to sort of reboot my immune system and for manyonths after continued to take high doses of steroids. My family had to travel 3 hours to see me and my husband spent the month staying with nearby family and a Premier Inn. It wasn’t a good month.Â
Some years on, I haven’t relpsed as many do and feel very lucky as I now know that the odds are not the best for surviving that first bout of TTP. Difficulties in pregnancy, no longer being able to drink tonic in my gin (the quinine content) and regular blood tests are luckily the only hangover I suffer from this disease. These tests will detect changes in my immune system and blood very early so the Drs can treat the cause long before things get dangerous for me again.Â
Like many patients with a rare disease my medical records have joined part of a clinical trial to help improve the knowledge of this rare disease. I feel nothing but lucky as I know it could have ended very differently and at one stage I had resigned myself that it would. It’s easy to worry it’ll happen again but I try not too as a month on a haemotology and oncology ward puts things into perspective. Some of the people I met on that ward sadly never left.Â
The NHS is incredible. I’m only here because of them.Â