Fri, Aug 25, 2017

My blood clot story

At the end of 2013 I had to deal with two setbacks - losing my job and getting a blood clot in my left leg, otherwise known as DVT or Deep Vein Thrombosis.

A DVT can be fatal, as if the clot dislodges itself and moves into your lungs it will cause something known as a pulmonary embolism. A PE is extremely serious, and requires urgent medical attention.

When I got my clot, I first thought it was muscle pain. Much like most men would, I acted tough and delayed seeing a GP, which for the reasons above, was in hindsight very foolish and put me in danger.

I was put on a course of heparin, which involved injecting myself in the stomach with a two inch needle for eight days. This wouldn’t clear the clot, (this would need to dislodge itself) but it would thin my blood and stop anything else happening.  The clot itself caused me quite a lot of discomfort. One morning I woke up screaming in pain as it felt like my knee was about to burst. Thankfully, it dislodged and went away.

Bizarrely, after numerous blood tests and such, the staff at hospital found nothing wrong with me, and once my ‘INR’ had stablised after three months, my warfarin treatment ended. I then waited for results of a blood test which never came. I assumed this simply meant nothing was found. Life continued and I started a new job.

Fast forward and in 2016 I was going to Thailand. When I booked my travel injections, I asked my GP if I should take any precautions on the flight, having a history of clots. He checked my records and identified I hadn’t had a blood test that I should have had. This test would check my protein levels.

I had it, and then had a second. The second confirmed I had both protein C deficiency and protein S deficiency. Proteins are incredibly complex, and are the building blocks of life, so unfortunately eating an abundance of chicken wasn’t going to help.

They are also congenital conditions. This means I spent nearly three decades of my life walking around with a blood disorder which put me at increased risk of blood clots. As a result of this new discovery, I was prescribed Xarelto (Rivaroxaban) for life, which for a drug that has a reputation in America for being quite dangerous was unnerving.

But more scary was when I was told that if I did not take Xarelto, I could expect ‘a shorter life’. The consultants at St George’s hospital in London were clear. Take Xarelto and have a chance at a normal life, or risk a fatal clot at any time.

These events have been difficult to deal with. I can never have more than one (two on ‘special’ occasions) drink a day for the rest of my life, and as a huge fan of beer and alcohol in general, that has been difficult to cope with. I also can’t do contact sports, other extreme sports, ride bicycles/motorbikes, and avoid anything that poses a large risk of injury. This is because it can’t be measured how much Xarelto is thinning my blood, so if I bleed, that could be quite dangerous. Currently there is no antidote either, although they are working on one.

Though it is unlikely you, or even anyone you know, has the conditions I do, blood clots are a huge risk. Especially when they get into the lungs and cause a pulmonary embolism, clots can be and are fatal. I can consider myself lucky to be here and I’m now trying to make sure I do all the things with my life that I want to.

I wanted to tell my story to help spread awareness, and to let people know that clots are not just something that affect the elderly or the hospitalised. I would also like to stress that any time something doesn’t feel right with your body, go and see a GP as soon as you can. It’s better to be safe and taking risks with your health is never worth it.

For more information on blood clots:

And protein c/s deficiencies: