My name is Martina, I’m 32 years old, and I was diagnosed with TTP in October 2011. I am originally from London, UK but a month prior to being diagnosed, I moved to Australia on a working vacation. One day, my housemates and I went out for a few drinks to celebrate one housemate’s (Rita) completion of her General Practitioner exam. When I got home, I began to feel extremely sick, and was vomiting with a really bad headache. Luckily for me Rita woke up to me being sick and checked to see if I was ok. The next day, I still felt very ill and stayed in bed all day. Rita came home to check on me and as soon as she looked at me she said, “We’re going to the hospital.” I remember being in Emergency for about an hour that day and then nothing until I woke up a week later in intensive care to find that my aunt, my mum and her partner had flown in. This is when I knew things were really bad.
When I woke up, I had a tube in my mouth and nose. My mum and aunt told me I had been diagnosed with TTP and tried to explain to me what it was. I’d never heard of TTP before. At first, doctors believed that I’d always had TTP and that it had been dormant. I later found out that was not the case but still doctors had no idea what had triggered it. I had lots of questions but I couldn’t speak because of the tube in my mouth, so the doctors gave me a pen and some paper. My first question was “Am I going to die?”. I was completely freaked out, realising I’d been in hospital for an entire week and had no memory of it whatsoever. The first day I woke up, I remember being really tired but I was too scared to sleep in case I didn’t wake up again. It was at this time I found out that if Rita had not taken me to the hospital when she had, it is more than likely I would’ve died. She saved my life!
I did go through a phase of questioning “Why me?”, but I quickly overcame this because of the overwhelming love and support I had!
Initially, I was treated with plasmapheresis everyday but it was not working and my platelet count remained at 8. It got so bad at one point, they called my mum and basically told her to prepare herself for the worst. They decided to try a drug called Retuximab/Mathera and gave me 4 doses over a period of 4 weeks and it worked! My platelet count went up daily, my red blood cells were slowly no longer attacking themselves and I began feeling much better.
I spent a month at the Royal Prince Albert Hospital in Sydney, two weeks spent in intensive care and two weeks in the hematology ward. In the hematology ward, I was able to access a computer and I began researching more about TTP. It was during this research that I realised I’d had symptoms of TTP at least 6 weeks prior to going to the hospital, when I was still at home in London. I’d been getting random bruises on my arms and legs but did not remember hurting myself so I would just dismiss it. As an outpatient, I received plasmapheresis three times in my first week and required only one more plasmapheresis session after that.
It has been a year and a half since I left the hospital and I have since moved back to London where I go to Guys and St Thomas’ Hospital for my check ups and blood tests every 3 months. I feel almost 100% back to normal since my diagnosis with the exception of my memory, which is extremely poor, from what it was before my TTP Crisis. I have been downloading memory game apps on my phone to try and help with that. Touch wood, I have not relapsed and really hope that I don’t in the future! At first I was under the illusion that once the treatment was over I would no longer have TTP (where it was going to go, I didn’t know) but my Doctor informed me that I would have to be monitored for the rest of my life at regular intervals. At first this upset me, but to be honest, now I’m just grateful to be alive!
At first I was apprehensive about my future and travelling to developing countries, but I know the symptoms now so I am confident that I’ll be fine. I’ve ordered and now wear a medic alert bracelet everyday, it makes me feel more comfortable that if something happened, people would know that I have TTP and would have a number to call if needed. It’s still a relatively new diagnosis for me but I’m coping well with TTP. I’m alive and look forward to enjoying new experiences. Life is good and I hope to go travelling again soon!
I am so grateful for the care I received while in the hospital and as an outpatient. They are familiar with TTP at RPAH, which made them very helpful and able to answer my many questions. I’m also thankful for all those people that donated their plasma and to the Answering TTP Foundation. Not only did I get information but I also connected on Facebook with someone that also had TTP and found it great to talk to someone who totally understood what I was going through.