Deep Vein Thrombosis: “I Could’ve Suffered Serious Illness Or Even Death”

Last Updated on 27/03/2024 by Crip Life

March is Deep Vein Thrombosis Awareness Month where medical professionals, communities, and organisations come together to raise awareness of deep vein thrombosis (DVT) – its causes, signs, treatments and ways DVTs can be prevented. 

Our very own co-founder and editor Emma Purcell suffered a DVT a few years ago. To mark Deep Vein Thrombosis Awareness Month, she wants to share her personal story of how she sustained a DVT, the symptoms that were originally missed and the treatment she received. 

It was the summer of 2016, the weather was hot and sunny, I got myself a new car, met up with some friends and I just received my final university results. Everything felt great, except for this unusual lingering pain in my left leg. I asked my carers to examine it but they said there was nothing wrong and nothing to worry about.

A couple of days later, my parents just happened to come down to join me for a care assessment meeting. After the meeting, Mum assisted me onto the toilet and as soon as she brought my clothing down she instantly knew something was wrong. My left leg appeared to be extremely hot and swollen and she suggested we call the doctor straight away. 

I managed to get an emergency appointment with the GP that afternoon and they immediately suspected it was a DVT and I was booked in for an ultrasound the next day to confirm it.

The medical staff that examined me said I was so lucky it was spotted now because if I had left it any longer it could’ve spread to my lungs and I could’ve suffered serious illness or even death. 

In the three days leading up to this point, I had been in contact with at least 10 different carers all of whom had been supporting me with personal care and should have noticed my leg but nobody bothered to say anything about the swelling at all. 

I was so lucky my parents were there that day and that my mum noticed it. But I shouldn’t have to only rely on my parents to be aware of these things. Surely with all the training and health and safety procedures carers have to go through, they should be aware of the signs of things like deep vein thrombosis.

What is deep vein thrombosis?

Deep vein thrombosis (DVT) is a blood clot in a vein, usually in the leg. Symptoms can include throbbing pain, swelling, warm skin, red or dark areas on the skin and swollen veins. 

A DVT is more likely to happen if you are over 60, overweight, a smoker, have had DVT before, take the contraceptive pill or HRT, have cancer or heart failure and/or have varicose veins.

The cause of my DVT 

However, at the time, I was a fairly healthy, non-smoking 22-year-old. Despite this. I was actually at a higher risk of developing a blood clot because of my cerebral palsy, being in a wheelchair and not being able to walk or stand.

I believe my DVT was caused by poor posture in my bed. A carer did not correctly put in my sleep system, which supports me at night and this led to my leg being stuck in an awkward position, causing the blood not to flow properly through my veins.

This goes back to my ongoing discussion on the quality of care. No matter how many times I try and direct my care and get things adjusted, there are always still issues in the way I am treated. 

Not only if I was put in my bed correctly I wouldn’t have had a blood clot in the first place but also if people had acknowledged my swelling earlier on I could’ve been treated quicker with less risk.

Treatment for deep vein thrombosis

Treatments for deep vein thrombosis include blood thinning medicines – such as warfarin or rivaroxaban –  or surgery to remove or prevent blood clots. 

My treatment journey turned out to be slightly different. I began by taking rivaroxaban and about two weeks in I had to go for a routine blood test. Following the blood test, I got a phone call in the evening from the on-call doctor saying my anaemic levels were extremely low and I should go to A&E straight away. 

I explained I couldn’t make my own way to the hospital due to my physical disability and no support available at the time. The doctor then recommended they get me an ambulance to come and take me. Assuming the doctor was aware I was a wheelchair user who cannot transfer, I hoped that they were sending me an ambulance that was accessible – of course not. 

Half an hour later, after packing a bag of essentials and phoning my parents, an ambulance turned up with blue lights blazing. Two paramedics rang my doorbell and I answered the door. They were amazed to find out that I was actually the patient because they got the assumption that I had collapsed on the floor on conscience because my anaemic levels were so low.

After explaining the situation to them and reassuring them that I feel well in myself and I’m not a high-risk patient, it was then decided I would wait for my evening carer to arrive who could then drive me to the hospital because I wouldn’t be able to access or transfer into the ambulance.

Once at the hospital, where my parents then met me, I was taken to the AAU unit to have several tests including an ECG and more blood tests. Several hours later it was decided I would need blood transfusions to resolve the anaemia.

However, the next challenge was trying to find out what my blood group was. Not only did they have difficulty drawing blood from me but they couldn’t identify the blood type in the lab at the hospital. They therefore had to send my blood to a lab in Bristol to identify it.

Long story short, after three days in hospital and three blood transfusions later, I was discharged. It was concluded my anaemia was not related to the DVT but my very heavy periods. At this time, I was not on any contraception to control this and therefore the excessive bleeding was making me anaemic.

As for my DVT treatment, it was decided rivaroxaban was not suitable for me so they put me on a different blood thinner called apixaban instead, which I took for several months.

Deep vein thrombosis awareness

To be honest, before this experience, I have never heard of deep vein thrombosis (DVT). Fortunately, almost a decade on, I’ve not been diagnosed with another DVT but I am definitely more cautious about spotting the symptoms and requesting treatment as soon as I do notice. 

In 2019, I did suspect a blood clot in my right leg and immediately went for an ultrasound to confirm but thankfully it was not a DVT on this occasion.

I know I have been very lucky with my experiences of having deep vein thrombosis. For other people, it can cause long-term health complications or even be fatal. As I said before, I was just so lucky my Mum spotted the symptoms that day otherwise I may not even be here now. 

Have you had experiences with deep vein thrombosis? Let us know in the comments box, on social media or by contacting us to share your personal story.

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