My name is Clare Reynolds I am 35 years old and I have chronic venous thromboembolism (VTE). I have currently survived approximately 13 blood clots in various parts of my body including the brain, lung, leg and arm. My most recent clot was diagnosed about 2 months ago..
Surviving VTE has been the single most influencing factor in my life and not purely because I have survived.
I hope that reading my story will help you understand why the work Thrombosis UK does is not just important in preventing VTE Death but also vital in helping survivors, like me, live and not just exist.
Here’s how it all began…In August 2004, 4 days after my 25th birthday I was diagnosed with a massive blood clot in the top of my left leg. I had no idea what impact this would have. All I thought was I would be on tablets for 6 months, that I couldn’t drink and go out and then I would be better. After the 6 months I was off the blood thinning drug I’d been prescribed and I was back out partying. This however, was short lived and I was diagnosed with a further clot just 4 weeks on and put on blood thinners for life. ‘Life over!’, I thought, well life as I knew it! What was I going to do? I was 25 years old and I was feeling immensely scared, paranoid and angry! The blood clinic I had to go to was full of old people, no one could answer the questions I had? I mean, really, the issues of a 25 year old woman are nowhere near the concerns of a 50/60/70 year old woman. I had no one, no advice relevant to me. I was arguing with consultants and nurses. I was a regular attendee at A & E, full of paranoia that I would have a clot that would go to my lung and I’d die – as many medical professionals took great delight in telling me I was lucky to be here!
Cue Lifeblood – the former name of Thrombosis UK. At long last after frantic googling I had finally found a source of information relevant to me. The impact of this was immense. I finally had someone who understood, who I could bounce idea’s off. At that point in time this was my lifeline and has been ever since. You see, what many people don’t know is the true impact of having an episode of VTE especially when you are young. I’m not talking about the general public neither I am talking about medical professionals from consultants to nurses to GP”s.
Over the last 11 years I have had 3 operations to try and unblock my left leg of the original clot. All have failed. On a lighter note I have had two children aged 7 and 2 and have a wonderful partner who I met online dating whilst recovering from the first operation. Since becoming pregnant with my second child though I have had a few clots in the lung, one in the brain, one in the arm and a few more in the leg. I now see two haematologists and two vascular surgeons between Liverpool and London. I have had to give up work and I have been diagnosed with Antiphospholipid Syndrome, a disorder that causes the blood to clot. I will be on blood thinners for the rest of my life and possibly disability and sickness benefits also. I have had a tough 11 years and judging by last Friday it’s not letting up.
I realise that my story sounds a very long, sad and depressing one but I’m not a depressing person though I am in fact very positive.
Am I happy? Yes I am. My constant relationship with Thrombosis UK has led me to becoming the first patient ambassador for the charity and more recently a trustee. Ok it’s not what I envisaged on my 25th birthday but it isbetter. I have overcome my psychological demons, become a stay at home mum, and put my skills and efforts to good use. Although I am a very rare case the journey I have taken and the experiences I have had are not uncommon to any survivor whether it’s a DVT in the calf, brain or lung.
Thrombosis UK are not only a sounding board for patients like me they now have a buddy system and a Facebook group so we can all support each other. They have also been vital in ensuring not only that bloods clots are prevented through changes to NHS policy but are instrumental in promoting awareness of the signs and symptoms VTE present with. This is throughout the general public and the medical community. The need is great and evident in many examples of cases the charity deal with everyday.
Thrombosis UK (formerly Lifeblood: The Thrombosis Charity) was founded in 2002, and became a registered charity in 2003. The organisation is dedicated to promoting awareness, research and care of Thrombosis.
Thrombosis has been and remains a major cause of death in the UK. Research shows most people have little or no understanding about the causes and effects of thrombosis, and how it can be prevented. Every year, it's claimed, an estimated 25,000 people in the UK would die from venous thrombosis (also called venous thromboembolism or VTE) contracted in hospital; hospital-acquired clots, if thrombosis prevention is not given. Most people affected by thrombosis are older, but anyone can suffer from thrombosis, occasionally even children and babies.
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