Fit, well and just 20 yrs old, Bethany’s account

I was first diagnosed with Deep Vein Thrombosis and Pulmonary Embolism in October 2013, at 20 years old. I woke up that morning feeling the same as always. Nothing was noteworthy.

It was only when a friend brought it to my attention that I noticed my right leg was slightly swollen and had a red-ish tinge. I had previously reacted to insect bites in a similar way, so I planned to simply take an antihistamine and go to my lectures. Besides, I was 20 years old, fit, with a healthy BMI – why would I even consider this could be a blood clot?

The paramedics reassured me and kept the mood light-hearted. I refused a wheelchair or crutches and hopped through the hospital, laughing at how ridiculous the idea of thrombosis was, positive it would be anything but, and waited to be seen in A&E. When I was eventually assessed, I was given an anticoagulant injection and told to return the following morning for a full body ultrasound. The fear began setting in again and I didn’t sleep the entire night. I was certain that if I fell asleep I would miss a warning sign my body was giving me and I would die.

The next day I had a full body ultrasound and they confirmed that I had multiple blood clots in my lower and upper leg, in my torso. I was admitted into Emergency Ambulatory Care where the Doctors were incredible. By definition, I should not have been kept on the ward for the full week, but I heard my doctor arguing my case and refusing to have me moved until they had determined why my oxygen levels were so low.

Throughout the week I had several tests and exams, whilst receiving anticoagulant injections and blood thinning medication. The medication made me weaker still and gave me headaches and a fever. By the third day, my right leg was 3 inches bigger than my left, purple in colour, and standing was not possible for more than 10 seconds at a time. The pain I felt when trying to walk is still the worst I have ever experienced. The only way I could explain it, is I thought my skin was tearing and my leg would pop.

If I’m honest, I don’t remember many of the conversations that we had whilst I was in the hospital and didn’t understand the gravity of the situation. The strong painkillers were clouding my mind and I was oblivious that I was I was in any danger. My family, however, were in pieces. My parents visited every day and alternated between happy faces with me while I carried on as normal, and panic as they spoke to the doctors away from my bed. On the fourth day, I was sent for CT scans which confirmed I had clots in my lungs, explaining the low oxygen levels. It was then that a plan was made for me and I was discharged the following evening!

I slept for the next 2 weeks. The codeine that I was prescribed made me so lethargic that I only woke for my next dosage. I wasn’t able to walk, or move, so had to source a wheelchair. This did not help at all as I was not strong enough to push myself and would easily get out of breath. I progressed to crutches after a few weeks and was able to return to university! I had to visit the anticoagulant clinic each week to monitor my blood levels, which had a huge impact on my lecture attendance. I was urged to defer my final year at university and try again the following year by the head of department, but I was determined to graduate with my friends.

I was able to walk unassisted after about a month, however would still feel the pressure building in my leg if I exerted myself. I continued visiting the clinic each week and meeting with the haematologist until February 2014. I was informed that I had Factor V Leiden mutation and would need to be aware of the condition throughout life.

In 2015, I noticed a soft lump appear in my groin and was scared that this could be a clot. I rushed to my GP who assured me this was not anything to do with my veins and was in fact a hernia(?!). I was sent for further tests and another full body ultrasound, which confirmed it was a varicose vein. The haematologist told me that I had scarring of my veins across my body and that I still had 1 large clot remaining in my upper thigh. The lump which I could feel was actually a new vein my body had grown to bypass the clot and continue its cycle. Fascinating! I didn’t even know bodies were capable of this!

Almost 5 years on from that first clot and I am living life as I was before. I keep my BMI at a healthy level and avoid certain medication to prevent future thrombosis. The only difference is now I take anticoagulant injections before and after a long-haul flight, but that hasn’t stopped me traveling.

It can be a scary and confusing experience being diagnosed with a thrombotic condition, but there is a lot of help and advice if you ask for it.

And if you notice a difference in size, colour or heat in your leg,

GET IT CHECKED OUT.

I don’t know what would have happened to me if I had ignored mine, like I originally intended to do!