‘You have venous thromboembolism’.. which translates to, ‘you’re lucky to be alive’.
1 in 3000 people get struck by lightning in their lifetime. 1 in 14 million people win the lottery. 1 in 1000 people get deep vein thrombosis or a pulmonary embolism.
And that 1 in 1000 people, was me.
At 22 years of age, whilst on the trip of a lifetime travelling the world, I almost died. One teenie-tiny-eenie-weenie blood clot almost ended my life, while it was only just beginning.
Luckily, I am still here to tell the tale, and I am telling it, not for sympathy or for ‘attention’. But simply to share, and hopefully help others avoid what happened to me. Every time I have told someone my story, I get the same response. ‘I thought only old people got DVT?’ My answer – no, although less common, young people are still at risk of DVT. And that, is the reason I’m sharing my experience.
Let me rewind 7 months, I had been saving for a looong time and was finally going travelling, something I’d dreamed of since I was about 15. My flight from London to Bangkok was around 18 hours all in all, and I knew I should probably wear flight socks. However, after leaving it to the last-minute, and the shops being sold out, I decided to risk it… Mistake.
Fast forward 6 weeks. It’s now mid October, I had been travelling around Thailand, Vietnam and Cambodia by bus, and had just arrived back in the Thai border to Pattaya. I was experiencing a pain in my lower back, and was sent away from the doctors with antibiotics for a muscular injury. Throughout the week this pain gradually began to move around into my groin, leaving me feeling stiff. I remember my sister actually saying ‘be careful as that could be more serious.’
Saturday night came, and Steve (my boyfriend) and I went to bed in our apartment in ‘The Five-O Hostel’, little did I know this was the night my life would change.
Around 2am I woke up in agony, drifting in and out of sleep, I eventually woke Steve up crying around 7am saying I needed to go to the hospital. After one look at my leg, it was clear something wasn’t right. It was twice the size, solid as a rock and BLUE! I tried to get up and couldn’t put any pressure on it.
After we limped downstairs and the hostel receptionist ran outside to get a taxi, I thought I was going to be sick, so went into the downstairs toilet. It was then that I couldn’t breathe, my throat was constricted and I felt dizzy. I opened the door and passed out, luckily Steve was waiting outside, so caught me and lowered me to the ground. At this stage I had no idea what was happening, I couldn’t see anything but black, my ears were constantly ringing, but I could feel hands gripping me and Steve saying he was going to carry me to the taxi. It was at this point, that one of the lovely Thai women shoved a pot of liquid (some kind of balm) under my nose, bringing me to my senses. Effectively it was similar to smelling salts, but smelt nice!
After reaching the small hospital, I saw the same doctor we’d seen previously, who told me she suspected it was DVT (deep vein thrombosis). But as it was a Sunday, they did not have the staff to do the relevant tests and so I got sent off to Pattaya Bangkok hospital.
At this point I was dizzy, disorientated and couldn’t stand on my leg, so a wheelchair was bought for me, and I explained the situation to the front desk. I was taken straight up to the relevant department and had to wait for tests.
We spent around 8 hours up the hospital, I had an ultrasound on my leg, a CT scan, an ECG and various blood tests. It was then that the consultant pulled me aside and told me ‘you have venous thromboembolism’.
‘Basically, you have an extensive blood clot in your leg, which is stopping the blood flow. You also have a blood clot next to your lung, if that reaches your lung there is risk of brain damage, or death. You’re lucky to be alive.’
(As someone who exercises regularly, and was actually probably the fittest I’d ever been, this was a shock. Surely my blood flow must be good? I thought DVT was more likely to happen to people who didn’t move alot? And travelling – well we were constantly walking or hiking or doing some form of activity. )
I was immediately taken to have injections of blood thinners into my stomach. The injections work pretty fast at thinning your blood and preventing any new clots forming. This did not mean my current clot would go. But it shouldn’t get any worse either.
The consultant checked me over, and sent us home with 5 days worth of 5 different tablets, crutches and a follow-up appointment.
The following day was super difficult, I was in a lose lose situation. I couldn’t walk without the crutches, however I couldn’t use the crutches without being breathless. We pretty much stayed in our apartment that day and watched films, as I couldn’t do much else. Monday morning came, and we decided to walk 100m up the road to the shop to get food for breakfast. And, I couldn’t breathe.
Back to the hospital we went. Here we go again.
I was admitted into hospital so they could keep an eye on me, and give me daily injections of blood thinners, as this was more effective than the tablets. After being prodded and poked, I was settled into a private room, and told I was most likely going to spend the week there.
Steve set up camp on the sofa, and was amazing. Went to the shop and bought me food, helped me wash and dry my hair and just supported me. Which, when you’re halfway across the world from home, is the most you need.
The week was slow. A long week of thinner injections, being woken up every hour to check my vitals, examinations and endless cooking programs on tv. But that is what kept me alive.. well not the cooking programs, they just kept me hungry!
Saturday came and I was given the all clear to be discharged, handed compression stockings, my £6000!!! bill was paid by my insurance – thank god! And we finally walked out of the hospital.. well hobbled!
I now had to be so careful. I couldn’t get prescribed on Warafin (the reversable blood thinners), as you had to have the levels checked every couple of days. And because we were travelling, this wasn’t ideal. So I got prescribed Xarelto, 30mg a day, down to 20mg a day after a few weeks. This medicine is good as you don’t need to be regularly checked, but it isn’t reversable. Which means I have to be so careful about cutting myself, as my blood will be unable to clot and I will bleed a lot.
I was also taking Daflon, 20mg Controloc for acid-secretion, 20mg Reparil for swelling, and Ultracet for pain. I was a walking pharmacy.
(One thing I will mention, is the nurses in the hospital. I could not fault them at all, they were amazing. They helped me shower twice a day, changed my bed sheets and cleaned my room everyday, and were friendly and quick to take action. I couldn’t have asked for better care. Especially in a foreign country!)
Fast forward 1 week. The Drs advised us I was ok to fly to Australia, when in reality, it wasn’t sensible. After the 7 hour flight into Adelaide, and speaking to my Aussie friend Megan’s mum who is a nurse, we headed to Adelaide hospital to get checked over and a second opinion.
I was given an ECG, which was fine, and had a chat with the student nurse. She reassured me and told me I was on good medication and would be fine until I got back to the UK, in 4 months!!
Fast forward 2 weeks. I could then walk without the crutches, result! However, my leg would be fine in the morning, after sleeping with it elevated. But by the end of the day, my ankle was swollen and tender. It was at this point I decided to go back to hospital for a check up, and so we entered Melbourne Hospital.
( I was seeing more hospitals than countries at this point!)
Melbourne hospital has a specialist DVT department, and so I was in a good place. I was given a repeat ultrasound and given a bed on the emergency ward. (As I had been to Thailand, I was not allowed in any of the in-patient wards incase I’d caught anything, so I was left on the emergency ward while waiting for the test results, or a room in isolation).
The Dr told me that the clot had got bigger, a 13cm clot was in my left calf, and a 25cm clot was in my left thigh up to mid stomach. I panicked! However, in Thailand my ultrasound was only done below my groin, so it may not have grown, it may just not have all been measured. I was put back on the stomach injections and had to stay overnight. Steve and I shared my bed on the emergency ward, and had a restless night due to emergencies coming in throughout the night.
The following day we had to hang around until 6pm, where I was given another injection and then discharged. My ECG and vitals had been fine all night, and so it appeared the PE (pulmonary embolism) should have gone, and was no longer a risk. I was discharged with another 3 months worth of Xarelto, and told to book an appointment with a Haematologist as soon as I got back to the UK.
My leg steadily improved from here on, the only time it gave me grief was walking uphill / cycling – exercises that heavily involve the calves. Apart from this, it was fine. No swelling, no pain, no breathlessness.
Fast forward 5 months, 20th May 2017. I am back in the UK, and have had my appointment with the Haemotologist at Southend Hospital, and have discussed the plans for me. In a couple of days I will have to have blood tests to check a lot of things, including if it may be hereditary, or a clotting syndrome etc. I will then have to have a heart scan, to see if there is any back pressure on my heart from the clot, providing this is all fine I can come off the Xarelto in another 5 months. If not, then long-term plans will be discussed – which the consultant said isn’t recommended for young people.
Although, this hopefully seems promising, providing the heart scan is fine, the DVT has also affected my life long-term.
Any plane or car journey over 4 hours in future (once I’m off the medication), means I will have to go to the hospital before and after to get blood thinning injections to prevent another clot.
I will have to take blood thinning medication during and after pregnancy to avoid clots.
I will have to wear compression stockings everyday for 2 years, if not longer, to avoid any later onset tingling / swelling / itching in my leg due to the vein damage.
And there will always be that feeling in the back of my mind, that it may happen again. And maybe I won’t be so lucky next time.
Because, ‘blood clots don’t happen in young people?‘ At least, that’s what most people assume…
So that’s why I am sharing my story. Because I am the 1 in 1000 young person who got a blood clot. I survived it. But I will have to live with the repercussions for most likely the rest of my life. I don’t know if taking precautions would have stopped it happening, but I know there’s a very good chance they could have.
I hope I can advise and persuade others to take preventatives, to stop this happening to you.
1. Please, please wear compressions stockings / flight socks on a long haul flight. And walk regularly. You may think you look silly, but it could save your life.
2. Especially if you are on the contraceptive pill, take an aspirin on long flights – ONLY if you do not take blood thinning medication already.
3. Drink lots of water. Not only does it have many other health benefits, it also thins your blood and prevents clotting.
4. Listen to your body. You know when something isn’t right. Fuel it with the right foods and exercise.
If I can help prevent those other 999 in 1000 people from getting venous thromboembolism, then my story was worth sharing.