Robyne Toseland was home alone when she collapsed at the bottom of her stairs aged 22. Little did she know at the time, that she would come close to death within the next few days and be dealing with serious health consequences for the rest of her life due to blood clots.
When the now 37-year-old came around at the bottom of the stairs, Robyne frantically searched for an inhaler, assuming she had suffered an asthma attack, and spent the rest of the day on the sofa, thinking she would soon recover. “But I didn’t feel right,” said Robyne, from North London.
“My chest felt funny and I couldn’t walk up a single step. Then, the next day, my then soon-to-be husband Carl was having to carry me up the stairs. My heart felt like it was about to beat out of my chest. I couldn’t even lift an arm. I felt like I couldn’t breathe - as if an elephant was sitting on my chest.”
By this point, Robyne had been feeling generally under-the-weather and getting various infections since the previous November - so much so, she had had to quit university a month before she collapsed. She was studying to become a primary school teacher and had just three months left until she qualified. It was in November that her GP had diagnosed her with asthma - hence her assumption that this was the reason behind her fainting.
It was her mum and soon-to-be husband who persuaded her to go to urgent care. After checking her oxygen levels, the doctor told Robyne they had to momentarily leave the room, which she thought was “weird”. The doctor returned to tell Robyne that an ambulance had been called. “I just cried as I was confused and I had never been in hospital before and didn’t want to go,” she added.
Robyne was told she had a “massive” pulmonary embolism (PE), which is a blocked blood vessel in your lungs, as well as multiple smaller blood clots throughout her lungs. This would have been caused by deep vein thrombosis (DVT), which is when blood clots occur, usually in the vein of the leg. “It was like they were speaking a foreign language,” said Robyne. “I had no idea what they meant and no concept of how ill I was.”
Beverley Hunt, M.D. OBE, chair of the World Thrombosis Day Steering Committee, professor of thrombosis and haemostasis at King’s College, and consultant at Guy & St. Thomas NHS Foundation Trust, said she sees Robyne’s type of blood clot in one in 1,000 adult patients every year. In other words, it is a relatively common condition. And it is also a potentially life-threatening condition, which becomes more serious the longer it remains untreated.
Once she arrived in intensive care, multiple doctors sat at the end of Robyn’s bed and told her, “You really are very, very ill,” - but, she said, “I just didn’t register any of it. I was honestly in complete denial.” In reality, “As soon as I moved my heart felt like it was going to explode and, little did I know, the doctors had told my parents and husband to prepare for the worst - they didn’t think I was going to survive the night.”
Robyne ended up staying in hospital for two weeks and was put on the blood-thinning medication warfarin, which she was told she would be taking for the rest of her life due to the extent of the clotting. And getting discharged from hospital turned out to only be the beginning.
"14 years later and I’m still suffering a million different consequences,” said Robyne. “People think with blood clotting that it just goes away and gets better, but that is not always the case.” In the years that followed, her mental health “spiralled out of control”.
“Mentally it has been so tough,” she said. “I was in complete denial when I got home from the hospital. The doctors said it would take a long time to recover, but I thought that meant a couple of months - I never imagined that it would have such long-term consequences.”
While Robyne said she has seen many therapists, connecting with people who had gone through a similar experience had been the most helpful when it came to her mental health. “The main thing was I felt on my own,” she said. “No one in my family had experienced a near-death experience. It’s so important to connect with people who have suffered something similar, otherwise it’s a really isolating place to be in.”
She also suffered a haemorrhage, due to her blood-thinning medication, which caused her to lose six pints of blood. “That was honestly horrific,” she said. “I was so unwell. I couldn’t physically stay conscious because it was so painful.” Then, when she was taken off warfarin, she suffered yet more blood clots. “They weren’t as severe,” she said. “ But I was still poorly and I was just thinking, ‘How could this even happen to me?’”
After some investigating, Robyne was diagnosed with antiphospholipid syndrome, which is a disorder of the immune system that causes an increased risk of blood clots, according to the NHS . As a result, she would have to be on warfarin for life.
Later, Robyne’s large bowel stopped working, due to the haemorrhage, which resulted in her having to wear an ileostomy bag bag that comes out of her abdomen to bypass the organ. She has also been in intensive care three times with respiratory failure. This is because the heavy scarring on her lungs has meant that they cannot cope with infections, which has led to her getting pneumonia on multiple occasions. Her most recent intensive care admission was only a year ago.
This horrific ordeal has changed Robyne’s life. “It’s ruined my career and ruined my potential of having a family - the two things that are so important to me,” she said. “Not having all those normal things that everyone wants in their life - that’s been really hard to get my head around, that’s the thing that hurts the most.”
Robyne had been planning on getting married to her childhood sweetheart when she was diagnosed - and the couple did still go ahead with the wedding in 2009. But she has been strongly advised against having children. “I’ve been told I shouldn’t get pregnant as the risk of dying is unquantifiable,” she said. “Being a mum is so important to me. I can’t imagine not having a child in my life - not just for me but for my husband also. But so many physical problems intertwine. It’s a battle between my head and my heart. I want a baby, but I don’t want to lose my life as a result.”
It is the long term and life-changing consequences such as this that has made Robyne “passionate about raising awareness” of blood clots. “I wish I’d known more about the symptoms, because if I’d been aware, then I could have suffered less severe effects,” she said. “I don’t want people to suffer a similar fate."
Key symptoms of DVT that professor Hunt said to look out for include swelling, pain and redness in the legs. But the condition can also be asymptomatic - as was the case for Robyne. If a PE then develops, the expert said signs of this could be chest pain, shortness of breath, feeling sweaty and unwell, and occasionally coughing up blood or fainting. Robyne said she also experienced blue lips, heaviness in the chest and feeling that her heart was beating really fast. Once, she went trampolining and managed two jumps before she was hit by a feeling like she might pass out and her lips turned blue.
“One of the problems is the unclear set of symptoms and the fact that they can present in different ways,” explained Professor Hunt, adding that 80 per cent of DVT cases do not even cause swelling or redness, just unexplained pain. She added: “If you’ve done something that might precipitate a clot and then get unexplained pain in your leg, you should think about the diagnosis of DVT.”
The expert said that being in hospital is a huge risk factor up until 90 days after discharge. Other risks include being overweight and taking hormones like the combined oral contraceptive pill or tablet hormone replacement therapy (HRT). Then, patients with cancer or people with chronic conditions like diabetes are also at a higher risk. The latter is a risk factor because diabetes makes the blood sticky, which is one of the causes behind a blood clot, alongside damage to the lining of veins and immobility.
Robyne said she is currently just trying to take life a day at a time. “That sounds really sad. I’m in a place where I’m a bit frightened of everything. When blood clots are so severe, I don’t think you ever get over it. Throughout these years, I’ve been thinking, ‘Okay, I’ll get my career and a family,’ - but I’ve realised my life isn’t working out like that.
"I desperately want children - but there’s the issue of getting through the pregnancy and then would I be healthy enough to look after a baby? I often feel unwell and am permanently exhausted.” One of Robyne's practical focuses at the moment is trying to work out how to prevent herself from becoming so unwell as a result of the infections that have left her in intensive care.
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