WHEN Robyne Toseland was hospitalised for two weeks her family were told to ‘prepare for the worst.’
Robyne was just 23-years-old when her life was turned upside down by a near fatal blood clot on the lung.
It is now 13 years since Robyn was hospitalised and she now faces the devastating fact that pregnancy could kill her.
She has suffered multiple blood clots over the years, leaving scars on her lungs and her dreams of having a family are now in tatters.
Robyne who lives in Cambridge said: “I always assumed I would get married then have kids, but it’s very unlikely that me and Carl will be able to have a baby now.
“The high pressure in my lungs caused by the clots makes pregnancy very dangerous for me, which is absolutely devastating.”
The first blood clot she experienced left her fighting for her life.
Robyne had been a trainee teacher and noticed things weren’t quite right when walking up a steep hill to her lectures, she would struggle.
While she wasn’t unfit she just put it down to her fitness levels and said she was ‘too embarrassed’ to see her GP.
She added: “There was a particular incident at a trampoline centre when I jumped twice and was so tired, I could barely move.
“I remember lying on the trampoline and joking to my friend that she needed to call an ambulance. I tried to jump again, but after another two jumps I thought I was going to pass out.”
Despite her friend commenting that Robyne’s lips looked blue, she decided not to seek medical help and, a week later, she collapsed at home.
After collapsing, Robyne said she tried to carry on with the day but that her heart had been beating fast and that Carl, who was her boyfriend at the time, told her to go and get checked out.
My husband and mum were told to prepare for the worst. They didn’t think I was going to make it.Robyn Toseland
Robyne first thought she was suffering with a chest infection but she was soon admitted to hospital where doctors sent her for tests.
“After that, they realised that the situation was actually very serious and I was taken to intensive care,” Robyne said.
“They put me on oxygen, which made me feel a lot better, but I didn’t really understand what was happening. I remember a doctor sitting down at my bedside and telling me that I was very sick.”
The tests revealed a blood clot on her lung, which could have been fatal.
She said: “My husband and mum were told to prepare for the worst. They didn’t think I was going to make it.
“I was put on blood thinning medication and was covered in heart monitors. It was a very surreal experience.”
The treatment worked and the blot clot was broken down into scar tissue, but medics were still unsure of the cause and said it could have been down to the contraceptive pill she had been taking.
“When I left the hospital, they warned me that it would take a long time to recover, but nothing could prepare me for the reality of that.
“I imagined it would be a couple of months, but my recovery has taken over my whole life ever since”, she said.
After returning home the effects remained and she struggled with breathlessness.
She added: “I’ve had multiple blood clots on my lungs since. It’s become a part of my life that I have had no choice but to accept.
What is a blood clot and who can get one?
Consultant Venous Surgeon and founder of The Whiteley Clinic, Professor Mark Whiteley, warned that blood clots can affect anyone.
He said: “When a blood clot is formed in the body, it is to prevent you from bleeding too much, however, sometimes a blood clot can form in an artery or a vein with no obvious cause.
“Blood clots can affect anyone at any age, but there are certain risk factors – such as surgery and hospitalisation, pregnancy, family history and certain types of cancer treatments.”
He added: “One of the most common misconceptions about blood clots is that they only affect the older generation. Despite what people think, blood clots don’t discriminate by age.
“While it’s true that as you age and become less active you have a slightly higher risk of blood clots, some of the patients we see at The Whiteley Clinic are in their twenties and thirties.
“If the diagnosis is delayed or left untreated, the clot can cause scar tissue or break off and travel to other parts of the body, such as the lungs, heart or brain, which can prove fatal.”
He added: “If you have suffered from blood clots before, you are at a slightly increased risk of developing one again. One of the risk factors for recurrent blood clots is stopping taking blood-thinning medications after your first VTE is diagnosed.
“A blood clot is a medical emergency and should be investigated as a matter of urgency.”
Thrombosis remains a major cause of death in the UK, yet many people have little or no understanding about the causes and effects of thrombosis, and how it can be prevented.
To find out more, head to www.thrombosisuk.org or www.worldthrombosisday.org
“In 2011, I had a retroperitoneal haemorrhage – an accumulation of blood in the retroperitoneal space at the back of the abdomen.
“I lost six pints of blood into my abdomen, which medics think was because of the blood thinning medication.”
She added: “After multiple blood transfusions, I was taken off those meds, because they decided the risks outweighed the benefits.”
Robyne has been hospitalised repeatedly due to health problems, the most recent time being in March 2021, when she had pneumonia.
She said: “It has started to affect my whole body. It even stopped my bowel from working properly, as the blood compressed on the nerves, so I now have a stoma bag to collect my waste.”
She added: “The issue is that as soon as I get an infection, my lungs cannot cope.
“When I was younger, doctors had considered that the contraceptive pill might be a cause factor, but I haven’t taken that for years, so it has now been ruled out.
“I was unclear on what the cause of my chronic blood clots was for years but now doctors think it could be down to antiphospholipid syndrome, which is an immune system disorder.”
Her condition has meant that she can no longer work - or have children.
She said: “I would love to be a mum, but doctors have told me that I would likely die if I fell pregnant, which is just devastating to hear.
“There is too much pressure in my lungs, as a result of the clots, and they say it’s likely they would fail under the strain of pregnancy.”
She added: “There are alternative options, but I’m not eligible to adopt due to my health and surrogacy is very difficult.
“I’m holding out hope that one day the doctors might change their minds on how risky it is for me to get pregnant, but until then, I’ve just become an aunty to a beautiful little nephew, which is lovely.”
Robyne hopes that by speaking out she will be able to raise awareness of the fact that blood clots can strike at any age.
She said: “This is part of my life now and I know a lot of people are going through similar experiences, but I don’t think there is enough awareness among the general public of just how serious blood clots are.
“I’m really passionate about raising awareness, because I just don’t want people to go through anything similar.
“I’m grateful that I’m still alive, but the blood clots really have destroyed my life in a lot of ways. I don’t want other people to suffer a similar fate.”
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