Emily Ricard's Story
The First Symptoms
I remember the pain very clearly. It was a sharp, deep-seated pain in the back of my left calf and knee that appeared quite suddenly in February 2015. I was in Barcelona visiting family when it got to its worst: when I woke up in the morning, my leg felt like lead and walking was challenging. But as I started going about my day, the pain subsided and I didn’t pay any attention to it. I told my family off-handedly about it and we joked that it was a pulled muscle: how ironic as I wasn’t particularly sporty. Eventually, the pain went for good and the issue became a dry cough that I couldn’t seem to shift. But it was still winter and I assumed it was a bug that I had caught. After all, everyone has a cough in winter, right? Then came the severe exhaustion and shortness of breath: things that I associated to being run down and drowning under mounds of coursework and mock exams. I soldiered on as always and figured that I just needed a break soon. Looking back, I wish that I had picked up on these warning signs, but due to my overall good health and young age of 21, I didn’t get concerned with these ‘minor’ issues as I expected them to disappear and they weren’t physically visible.
A Trip to HDU
The tipping point for me was one day in late March 2015, over a month after my first symptoms. I was walking home from a car park with my mother, a 5 minute walk that I was used to. I had agreed to carry a heavy basket back home and that combined with the steep climb out of the car park left me gasping for air. I tried to get myself home, but felt myself collapse onto a neighbour’s stoop, my vision blurring, hearing going in and out, suffocating. I walked the last 20 metres home and collapsed on the couch, unable to breath. My mother rang for an ambulance and in less than 10 minutes they had arrived, along with a motorcycle paramedic. They loaded me into the ambulance, administered oxygen (which still wasn’t enough to allow me to breath properly) and took me to St Mary’s hospital in London. They informed me that it seemed as though I had either a severe chest infection or P.E. (which would be very rare and unlikely for a person of my age). I spent 9 hours in A&E with my mother, breathing only thanks to the 15 litres per minute of oxygen I was receiving. X-rays confirmed my bilateral P.E., with doctor’s telling me that both lungs were full of clots, my heart was enlarged due to the extra effort of pumping blood and had I waited any longer to get to A&E, that they probably would’ve killed me in a matter of days. I was moved to a High Dependency Unit that night.
The Hospital Stay and Road to Recovery
The consultants informed me that I could either choose to have an operation that could ‘blast’ the clots out or just rely on blood thinners. I chose the latter, as they informed that the surgery in question wasn’t extensively tested on patients my age and that haemorrhaging in the eyes and brain could occur. I spent a total of 11 days in hospital undergoing various lung scans, leg scans (to check for any residual clots), echocardiograms and adapting to the Warfarin doses that I needed. Throughout all of this, I was lucky enough to have no lung pain, except for one day, more or less 1 week into my hospital stay. It came about quite suddenly and it felt like being repeatedly stabbed in my right lung with every inspiration and expiration. The nurses gave me a dose of Tramadol to help ease the pain but after almost passing out due to the strength of the painkiller, I was given Oramorph: the quantity of clots I had were blocking the air supply to a portion of my right lung and the pain I felt was literally the oxygen starvation my lung was encountering.
I was discharged from hospital after Easter weekend 2015 once my INR level had stabilized with the Warfarin and my pain was under control. Naively, I thought that I would be able to study for my upcoming law exam resits in July and go about my business as usual. I hadn’t realised just how much my body had been through and the sheer exhaustion of even accomplishing a simple task in a day. I took the decision to skip my exams as I had been accepted on a Documentary Photography MA and knew that I wanted to pursue a career in that. I also physically knew that I couldn’t be as demanding as usual with myself, which was difficult to accept as I’d never had to before.
It took me about 6 months, from Easter to late September to feel back to normal. In these months, I continued to monitor my blood at least once a week as well as consulting haematologists and trying to find out more about why this had happened to me. The overall conclusion was that the contraceptive pill had encouraged the clot formation, despite a 7 year long use (which is unusual) and I was simply unlucky. I also developed a resistance to Warfarin, which meant that my INR was at a dangerously low point despite adjusting my pill intake. My haematologist switched me over to Rivaroxaban, which was a great progression and less management for me.
Noticing the Psychological Impact
In September 2015 I felt ready to tackle my new degree, despite a niggling feeling of uncertainty: I didn’t trust my body anymore and I was terrified at the thought of stopping my medication for even the briefest time in order to conduct tests. I dismissed the psychological impact of my P.E. for a long time, until my father was hospitalised with a ruptured brain aneurysm in late September. Seeing him go through something so life-changing, as I had 6 months earlier, brought all my feelings and emotions to the surface and I knew I couldn’t ignore them anymore. I started by channelling them into a documentary project for my degree and self-published a book of instant photographs that he and I took in the hospital ward where he stayed for just over 2 weeks. I then started seeing a psychologist and quickly understood my own fears and issues that I’d been keeping locked inside for months. My father was fortunate enough to make a full recovery like I did and speaking together was a great help: he wasn’t just saying that he understood how I felt, he genuinely knew.
I wish that I had been told more about the psychological effect of thrombosis in hospital, as my father was told about the emotional effect of aneurysms and even got given leaflets about PTSD. The thing that I struggled with was the invisibility of the illness: from day 1 in HDU, everyone commented on how well I looked and it seemed like there was nothing wrong with me. Considering I’d been at death’s door the day before, it was a well-intended compliment and I appreciated it, but over time it grinds on you and can even make you question the seriousness of your illness. I also thought people might not believe me if I asked them for a seat on public transport when I felt too drained to stand, as from the outside I looked perfectly healthy. For me, the invisibility and feeling of isolation was the hardest to deal with.
Maintaining my Health and Setting Goals
Late 2015 I came off blood thinners for 2 weeks and had every test under the sun to see if I had any issues that could have contributed to my P.E. I was lucky enough to be perfectly healthy. From then on, my goal was clear: get off my pills and stop depending on medication if I didn’t absolutely need to. Funnily enough, my haematologist seemed more concerned with me stopping Rivaroxaban due to the severity of my illness than I was. I maintained regular scans and heart echoes and in 2016 following a V/Q scan (where it was noted that my clots had finally disappeared, leaving a web of scarring behind), I consulted a respirologist and underwent an effort test to check whether my breathing was still impacted, as it had been during my first two breathing tests at St Mary’s. My results were normal.
In September 2016 I had my last heart echo (completely normal) and in October 2016, I stopped taking pills completely, both blood thinners and progesterone based contraceptive pill, having opted instead for an implant, which is safe for someone with my condition. I reached my goal of stopping medication and am living a happy, full life. Rather than holding me back, what I went through has made me live life in a different way, a way that has made me more aware of my mortality and thus much more appreciative of every single experience and moment. I wish thrombosis and P.E.’s were spoken about more and especially in young people who tend to brush off the kind of symptoms I had: I know I did, and I’m not one to avoid going to the doctor’s at all. I wish that someone had told me about the psychological effect it would have on me sooner than when I realised it on my own. I know that it has changed my life and it will be something I’ll always have to live with medically, especially when it comes to managing any future pregnancy I may have. But this chapter of my life doesn’t define me. It doesn’t stop me from doing anything I choose to and it never will.