I am 42, female, was a long distance runner, cyclist and very active in dog sports prior to my diagnosis. I considered myself to be 100% fit and healthy.
In November 2022 I suddenly got an excruciating pain in my left leg that was only present when resting. I had not injured myself and was confused. Strangely enough, the only thing that helped was walking. But as soon as I sat back down the pain returned and it was worse than anything I had ever felt before. Despite it being fine when running I decided to take a week off running as I thought maybe I had pulled a muscle. I kept walking though.
It felt like I had lost all my fitness in that week – I couldn’t even run five steps without being short of breath
After a week the pain seemed to have subsided a bit, and I decided to start running again. However, it felt like I had lost all my fitness in that week – as if I had never done any exercise before. I couldn’t even run five steps without being short of breath which stopped me in my tracks. My leg also hurt again, and now it also hurt when exercising; it felt like a horrible cramp and was very heavy.
I still didn’t realise what was going on, so I just kept pushing myself harder, tried to run through the pain, but every day the breathlessness stopped me. One day I got terrible chest pain while outside, my heart started beating like crazy, I could barely breathe and knew that if I didn’t lower myself to the ground I’d pass out. I lied down on the ground, couldn’t get up and thought I would die. I couldn’t even hear anything anymore and everything looked like it was far away and blurry. I had no sensation in my hands and legs.
That was at the beginning of February, three months after the initial symptoms started. After about 30 minutes I was able to get up and dragged myself up the hill at snail pace. It felt dreadful and there were moments when I thought I wouldn’t make it back home. I booked an appointment with the GP for a few days later. In hindsight, I should have gone straight away. By the time I had my appointment I had another near-collapse episode and finally couldn’t deny any longer that this was serious.
The initial GP I saw ordered a D-Dimer blood test, but I couldn’t get an appointment for a blood test until 10 days later. In the meantime things deteriorated quickly, and a few days later I was unable to put any weight on my leg at all. I’ve never experienced pain stronger than this. So I made another same day GP appointment, and it was a different doctor. She looked at my swollen leg and was certain it was a DVT and PEs and she put me on Rivaroxaban and ordered a community Doppler scan which took place five days later and confirmed I had a DVT in my left popliteal vein.
Unfortunately, I had another near-collapse episode after starting treatment, so I was sent to hospital for a CTPA which showed that I had multiple bilateral PEs as well.
It’s now June and my life was uprooted completely
It’s now June and my life was uprooted completely. Running and outdoor activities were my life, and all of a sudden this was pulled like a rug from under my feet for seemingly no reason. I had no risk factors. I don’t know why this happened.
I’m just not ready to accept at 42 years old that this is it
Today I had a review with a haematology nurse who advised me to continue taking Rivaroxaban, and she has also referred me to a vascular surgeon as I have ongoing symptoms in my leg such as marked swelling and severe cramping pain when walking uphill or trying to run. I don’t know what the future will look like. I keep thinking I’m just not ready to accept at 42 years old that this is it… that it will never get better and I’ll have to live with this cramping pain for the rest of my life and might never be able to participate in the things I love again. I can walk my dog again which helps me a lot, and I’m grateful that I can continue to give her a good life despite being physically compromised. I’m trying to educate myself as much as I can about the condition, and all healthcare staff who have treated me have been great.
I assumed they only happen to older people
I do have deep regrets about waiting for almost four months and collapsing before getting help, wondering what if I had got help back in November? Would I have had a much better recovery? But a DVT was the last thing on my mind. I assumed they only happen to older people with either temporary risk factor and/or unhealthy lifestyles. I was very wrong to assume that.
The first couple of months post-diagnosis I got recurrent nightmares
The first couple of months post-diagnosis I got recurrent nightmares every night, they were always about getting killed by light beams or something else that was flying at me. It was terrifying. I was scared to go to sleep thinking I might not wake up again.
All those questions in my mind…
I started becoming hyper-vigilant about every sensation in my body, wondering if I’m getting more clots and whether that sensation is normal. I couldn’t think about anything else. And all those questions in my mind… questions that you simply don’t think about asking in the moment when you receive the diagnosis. It felt like a long time to wait until my phone call today.
I am extremely grateful for all the resources on the Thrombosis UK website and all the YouTube videos. I think I watched every one of them. It’s good to know there are people you can reach out to who can help you on this journey and who understand how it not only has a physical but also a huge mental impact.
I’m happy to say that my nightmares subsided last month, and I now only get the odd one. It’s definitely a step back to mental freedom. And now I hope that my body can make further steps towards reaching my previous fitness level again too.
I’m hoping that sharing my story will help other people who also assumed that something like this couldn’t ever happen to them. I’d like to think that I can make a small difference to someone else who is struggling.