My Blood Clot Story
I haven’t had enough courage to pluck up the confidence to write this properly. Largely due to the fact that I was scared to think about the potential consequences. In hindsight, I realise that this was a chance for me to document my thoughts, with the ambition to not only comfort others going through the same thing, but to educate others that this is not as rare in young people than some may expect. This is not to disregard the excellent medical research we rely upon, but to think with an open mind.
As you might of guessed from the title, I had a blood clot, or two in fact. I was diagnosed with a bilateral pulmonary embolism. Note - I am by no means a scientific or medical expert so please, correct me if I make any mistakes. From what I have learnt, VTE (venous thromboembolism) is where a blood clot develops in a vein inside your body. This is most common in your calf, a DVT (deep vein thrombosis), it causes pain and swelling in the leg and requires immediate medical attention.
‘One in 10 people with a DVT will develop a pulmonary embolism’ (NHS, 2016). This is where a piece of the blood clot will break off and travel into the bloodstream leading to a blockage in the pulmonary artery (the blood vessel that carries blood from the heart to the lungs). It can be life-threatening if left untreated. Below I have documented my own personal symptoms and the medical process I experienced, in order to show how easy it can be to misdiagnose, or overlooked due to a young age and put down to muscular pains or anxiety when it can be fatal.
On Saturday the 6th September 2014, I experienced sharp and heavy pains in my chest on the right side of my body. From near my shoulder blade to my ribs, a constant nagging pain continued to persist. Every time I inhaled my right side would tighten and stop me from breathing normally. I couldn’t lay on my back or on my right side without feeling pain. I felt a heavy sensation throughout the weekend and shallow breathing became the norm. This was excruciating pain but I just assumed that this was a trapped nerve or a pulled muscle. I was a 21, healthy young woman, this couldn’t be serious… could it?
I decided that it was time to book an appointment with my GP as this pain was not getting any better. My appointment was on Tuesday morning and at the time, this felt like a routine appointment with nothing to be concerned about. The doctor took my blood pressure, my temperature and listened to my breathing. His face perplexed, not giving away too much, he questioned my lifestyle or anything that could have caused injury to my chest. With no possible explanation for the pain, he mentioned how the combined contraceptive pill can increase the risk of a blood clot. You read the bold very rare side effects on the small print but you never think it will be you…
My doctor reassured me that we should keep an open mind. I followed my doctors’ instructions to alternate from ibuprofen to paracetamol for 48 hours. He asked to see me again two days later to see if the pain had lifted. I did feel better, though the pain was not disappearing. Throughout the 48 hours, I noticed I could not sleep without waking up in a sweat, walking down the stairs genuinely felt like I’d ran a marathon (or 5k is long enough in my case as I’m by no means a runner) but you get the gist, I was very out of breath and I started to struggle. I began to become very scared of the potential thought that it could be a blood clot. When I returned to the doctors Thursday morning, my doctor was still concerned and thanks to his open mind, he referred me to the hospital right away. I was directed to the ambulatory care unit where they were waiting for my arrival. I was so anxious and nervous that when they examined my pulse rate it came back far from normal. I needed a blood test, my first ever blood test and experience as a patient at a hospital. Not too bad for 21 years right?
My veins were so small it took two attempts by nurses to try and get some blood. The doctor was called and third time lucky he got some of my blood, how hard could this be? I had an ECG and the results came back normal. I had a chest X-ray, these tests also came back normal. So what could possibly be wrong? I waited for the results from the blood test. After two hours I was called and waited for the consultant and doctor to come. I overheard them both discussing the situation and they had previously told me that if the blood test came back negative, no worry at all for a blood clot. This blood test is to look for a protein called a D-Dimer, high levels of this could indicate that pieces of blood clot are loose in your bloodstream. It came back positive, and this was a cause for concern.
I asked the consultant how likely a blood clot could be and he said it was 50/50. They couldn’t believe how healthy I looked and for a person who doesn’t smoke or drink excessively, it was very unlikely. The doctor genuinely believed it wouldn't be a blood clot as I was too young and healthy. The potential causes that meant I was at moderate risk was the combined contraceptive pill, my great grandfather having one previously (though this wasn’t a huge influence) and the fact my blood test result was positive. With this in mind, they wanted to send me for a CT scan. The radiographers were concerned as they did not want me to be exposed to such radiation. In this instance, I had to have an arterial blood gas test to measure the amount of oxygen and carbon dioxide in my blood and see how well my lungs are working. A needle is inserted, in my case in the wrist which they warned me would be extremely uncomfortable, but it wasn’t too bad. My oxygen levels were good, higher than average, however my carbon dioxide levels were abnormal, this was alarming. This is where carbon dioxide flows out of the blood and into the lungs.
The consultant was now adamant that I wasn’t leaving this hospital until I had a CT scan. By this time, we waited another two hours or so. I had been there since 11:30am, it was now 7pm. I had an injection into my stomach (enoxaparin sodium) prior to the CT scan that would help to prevent any further clots. I had my first cannula that was needed to insert a contrast dye to show my blood vessels, whilst the scanner uses x-rays to build detailed imagery of the blood flow in my lungs. It was a weird sensation as I could feel the injected dye travel up my arm into my body then it flowed down and then I thought crap, I need to pee! But this was just the contrast dye effects.
The doctor went to the reporting room, my mum and I anxiously waited for the results. Unfortunately, they found one clot in my right lung and a small one in my left. My GP informed me that I was very lucky as the one in my right was in an artery extremely close to my heart. The ACU was closing and I was quickly instructed of what would happen from then onwards. I had to inject enoxaparin into my stomach at the same time everyday - the same injection I had prior to my CT scan, as well as take the prescribed mg of warfarin everyday.This is an anticoagulant used to prevent any further blood clots and decreases your body's ability to form clots in the blood. It doesn’t thin the blood, nor does it break down the clots, the body is actually clever enough to do this on it’s own! I now had to have regular blood tests to measure my INR (international normalised ratio). This determines the clotting tendency in your blood in the measure of warfarin dosage and vitamin K status. I was to be on warfarin for six months and at first have regular tests every few days then just once every week after my INR had stabilised. No alcohol for six months, eat broccoli, spinach and drink green tea sparingly…this is new? I had previously been on an intense juice diet so if vitamin k speeds up the blood clotting factor, does this mean this could have been a contributing factor along with the birth control?
What I have written so far is a large proportion of what I wrote the day after I was told I had a pulmonary embolism. Looking back, I couldn’t believe I was the youngest person they had treated for a blood clot in my local hospital. Who knew that this would happen? I then started reading articles of young people who had passed away, as they were unaware of the symptoms or not quick enough at recognising the signs of blood clots because we are told it is a rarity and very unlikely at a younger age. At the time, it upset me too much to continue reading more information as I didn't want to scare myself of the potential fatal consequences. To this day, it is unknown exactly what caused my blood clots but it is likely to be estrogen-based birth control which I no longer take. Today I am blood-clot free and have been tested for blood clotting disorders from which I am fine, although there are future precautions I must consider. For long-distance travel I have to take blood thinners. If I want to start a family one day, I will have to take anticoagulants and now I am more likely to get blood clot as well as consider these risks for my future children. If you take anything from this post, please never be scared to go to your GP even if you think it’s something minor, it is better to get it checked out. Listen to your body, you will know when something is wrong. In those moments where I was undiagnosed, this could have been fatal. But the emotional stress has made me a stronger person today, along with the loving support from my family who I am so thankful for. I also want to thank my doctor and the staff at Broomfield Hospital for keeping an open mind that day and for giving me an understanding of what was happening inside my body. Without your diagnosis, I might not of been luckily enough to be writing this.
I want to improve the after patient-care and raise awareness, I wish there was more support and understanding of the anxiety around this experience. I was told late at the hospital as they were closing that I had a PE, within ten minutes I was quickly explained of what medication and injection instructions I had to follow. I hadn’t even had the time to digest the information I just received. So many leaflets scattered across the hospital building with ‘blood clots can kill’, I was now alone to embrace these thoughts with only a set of leaflets to absorb. I cannot express how scary this moment was, people have died within hours of a blood clot, it can be fatal if it travels to your lungs, so what next for me? I was embarking on my 3rd year at university, I didn’t know if I could face my last year. But I wasn’t going to let this stop me from finishing my degree. Every cloud has a silver lining - I became fitter, healthier, passed my driving test and graduated with first-class honours, with two of my assignments focusing on our understanding of the medicalised body, as well as exploring epistemological implications of ‘seeing technologies’ i.e. medical imaging. This life-changing experience grew my interest around this medical area which I still wish to explore and engage in. I want to use my experience to raise awareness of the fatal side effects of birth control and to look out for these symptoms. I hope that you find it interesting and hopefully enlightening. Get to know the signs and symptoms of PEs and DVTs, it may just save yours or another person’s life.
Remember, blood clots don’t discriminate, young people get them. Surviving a PE is life-changing which has turned me into an advocate of DVT/PE awareness. Never be afraid to ask questions, there are no stupid questions.