Robyne Toseland

Cambridgeshire, United Kingdom

Having been born ten weeks early and weighing slightly over two pounds, Robyne Toseland of Cambridgeshire in the UK has always considered herself lucky. Lucky to be alive.

At age 22, she was diagnosed with asthma. No big deal, she recounts.

However, in early 2008, she noticed her breathing was getting progressively worse. One night a few minutes after exercising with a friend, she felt as though she was suffocating. At the time, she says, she didn’t realize the severity of what had just happened.

A couple of days later while walking down the stairs she began to gasp for air. “It felt as though an elephant was sitting on my chest.” as I frantically searched for my asthma inhaler.”

Over the next few days her symptoms increased in severity. They got to the point that she had to be carried upstairs gasping for breath even then. The next she knew, she landed in the hospital. The doctor there said she thought she was suffering a pulmonary embolism (PE). Robyne had no idea what that meant.

Tests revealed a massive PE and a massively enlarged heart. That sent her recuperating in the Coronary Care Unit. She was put on warfarin, which she was told would be her lifelong companion because of the extent of clotting.

Six years later, Robyne admits that her body still hasn’t fully recovered. In 2011, she suffered a massive retroperitoneal hemorrhage possibly due to warfarin. She says, “I have heard it is very rare for someone to be affected like that by warfarin, but I am a rare person. Most recently, I was again diagnosed with clots in my lungs and with an uncommon cardiovascular condition that makes my heart race.”

Since her PEs in 2008, there have been many false alarms where she would race to the doctor complaining of breathlessness, chest pain and just not feeling right. “My most recent bout with breathlessness seemed different – I saw the doctor immediately and again was diagnosed with PE. The lesson I have learned is that you should always trust your instincts – you know your body better than anyone!”

The doctors and I have been left with two questions: the first being, why and how did PE happen a second time? The second is what is the best long-term treatment? “It all feels so surreal,” says Robyne, “and I can’t quite believe that I’m in this situation again. But it highlights just how incredibly lucky I am to still be here to share my story, as my body has been through such a lot over the past six years. I’m counting my blessings, today and always.”

Undoubtedly there are days where she feels sad, upset and angry and actually believe that these things have happened in her young life. “Despite the fact that there have been some really dark days, and times when I don’t know if I can find the strength to get through it – I wouldn’t change any of it, it’s made me the person that I am today; a new and a stronger me.”

Robyne Toseland

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