First, a little background. I was born in South Yorkshire in 1967 and after university I left my hometown in 1988 to spend a gap year in the sunnier climes of Catalonia. Thirty-two years later and I’m still here; married, two teenage kids, and living and working in a small town about a two-hour drive from Barcelona.
I used to think I was quite fit and healthy. Not a serious sportsperson, but I did a lot of walking (including a few many-day long-distance walks during holidays), cycling, swimming, racket sports, and so on. As I moved into my 40s I did slow down on the sports and step up the sedentary lifestyle, though. Family, work – especially more desk work, and a smattering of laziness stepped in. I still walk a lot around town or to work rather than take the car, but free time sports have taken a back seat. This is probably why I am now a little overweight at 13 stone 10 pounds for a height of 5 foot 10 inch. Another possibly interesting fact is that I was a vegetarian from 1989 up until 2017.
In August 2013 I was on holiday with my family in a seaside town in England when I woke up in the middle of the night literally screaming with a sharp pain in my left calf. I thought it must be a pulled muscle or cramp and tried to get out of bed to put my foot on the ground. The pain was intense and wouldn’t go away.
I got back in bed and lay there in agony until day broke and I decided to try and get up. At this point it was still painful but I could just about move and we decided to skip the last day of our seaside holiday and drive back to my parents’ house in South Yorkshire. Strangely enough the position and actions of driving seemed to soothe the pain and I was able to do the driving. On arrival, I hobbled up to our bedroom and hoped things would feel better the following day. They didn’t, so thanks to my parents’ insistence I went through to A&E in the local hospital.
Strangely enough the position and actions of driving seemed to soothe
At the hospital I was given blood tests and, I realize now, the infamous D-dimer test. If this comes back positive, it means there is a possibility you have a blood clot, which may be blocking an important vein - a deep vein thrombosis (DVT). The test was positive, so they explained a little about blood clotting and DVTs to me. As many Brits, I learnt a lot about algebra and geography at school, but was never taught how to get a mortgage or what some of the most common illnesses are so I had never heard of this problem before – let alone the consequences it could have. Anyway, the medical staff seemed to think I probably didn’t have a DVT as there were no visible signs of swelling or redness around my lower leg, but they sent me for an ultrasound anyway which looks for clotting in your veins. It came up clear but as I was due to fly back to Catalonia a fortnight later, they said the safe bet was to have another ultrasound a few days later. This also came up clear so eventually I flew back home, still in pain but pleased to know it was not a serious problem – or so I thought. The pain didn’t subside but I tried to get on with a normal life.
The medical staff seemed to think I probably didn’t have a DVT as there were no visible signs of swelling or redness around my lower leg
However, about a week later, the visual signs were clear – even to me. My leg had swollen up significantly and was now very warm. I managed to hobble to the A&E in our hospital here in Tortosa, southern Catalonia, on 29 August, where I was given the same blood tests and was sent for an ultrasound which did actually find a DVT this time. Eighteen days after the first jolt of pain, in my popliteal and saphenous veins. As the A&E doctor tried to explain this to me, she put her hand on my shoulder and said, ‘Don’t worry, we’ll get you through this.’ What? Alarm bells went off in my head at last! She then went on to explain the possibility of the clot breaking off, travelling through your veins, and causing an obstruction to the lung (a pulmonary embolism or PE) which could, literally, mean saying farewell to this mortal world. As I said, I had never heard of this health problem below so I was speechless.
I was given anticoagulant injections (Heparin) and pills Sinthrome (Acenocoumarol) to prevent further clotting, while I waited for this clot to dissolve – or kill me! I was told to go back to hospital the following day, then 3 days later, a week later, and so on, for blood tests where they measure your ‘clotting level’ (the INR number) and keep adjusting the dose of pills until you’re stable around the magic number the doctors are aiming for. Eventually you end up with a fixed daily dose of Sinthrome and go back just once a month for this test. Meanwhile, the A&E doctor had told me to move around as little as possible – I understood from my ignorance that, apart from the pain, this was to reduce the chances of the clot detaching itself and doing its worst. I saw my GP too and she said the same. It wasn’t until I was given an appointment with a specialist (a hematologist) about 6 weeks later that they said I could, and should, start moving around – not overdo things but keep active.
Those first few weeks were terrible for a born worrier like me
Those first few weeks were terrible for a born worrier like me – lying down for most of the day, thinking of everything I’d been told and wondering what it would feel like if a clot started to move around. Would I feel it? What’s that twinge? Will I only notice when it gets to my lung? Will I be here in the morning? Anyway, by mid-November, two months after my diagnosis I was walking around more and more, wearing a compression stocking I’d been prescribed and taking the pills, but still off work. The hematologist said I’d be OK to fly to the UK for Christmas, as planned, and on my return to Tortosa in January I started back at work. In February 2014 I saw another consultant, the vascular specialist this time. She ran another ultrasound scan on my leg which indicated that the DVT had cleared up. In March, after six months, I was taken off Sinthrome and given annual appointments with the vascular consultant to keep a check on things. I did get occasional pain and noticed that my veins marked more in my left leg, but this is apparently a normal part of post-DVT syndrome.
Obviously, one of my chief thoughts was regarding why this problem had developed. I had flown a week before I noticed the pain but only a 2-hour flight, and I had also done some longish car trips – again, though, no more than two or three hours at a time. Weeks before, back in July I had spent a lot of time sat down working on the computer trying to meet a deadline for a translation. The doctors didn’t seem to think any of these factors was decisive, though, and they concluded that it was probably ‘just one of those things’ but they warned me to go straight to A&E if I ever noticed any similar symptoms.
Fast forward two years. August 2015. After three two-hour flights in a week, and a four-hour drive, I was in England on holiday once more when I started to notice a similar pain in the same leg! I rushed off to the hospital in South Yorkshire where they ran a thorough ultrasound scan and diagnosed the problem as a ‘superficial vein thrombosis’; that is, a painful but not life-threatening clotting in a minor vein which causes a painful inflammation called thrombophlebitis. They prescribed painkillers, a cream, and anticoagulant injections just to be on the safe side, especially as I was flying again the following week and was quite paranoid by this time at what I saw as ‘history repeating itself’!
After three two-hour flights in a week, and a four-hour drive, I was in England on holiday once more when I started to notice a similar pain in the same leg
On my arrival back in Catalonia my GP confirmed the diagnosis but also suggested seeing a consultant in Barcelona (paying to go private) to put my mind at rest. After another ultrasound scan, he also confirmed that it wasn’t a DVT this time but he suggested two preventative measures to ease my worries; having heparin injections before and after any future flights, and wearing compression stockings all day every day, for ever more. He recommended some non-prescription ones made by Mediven, which are the ones I still buy and wear today. About €50 a pair, but nice-fitting, smart and well-designed, in a variety of colours. They even do a colour similar to my skin so I can get away with wearing them in summer without arousing too many strange looks! He also said that having had a DVT so young and for no obvious reason, perhaps I should have a blood test to see if I had a genetic predisposition due to the so-called Leiden mutation of the blood clotting factor V. I did the test and it was discovered that I had in fact inherited this mutation but only from one parent, which means you’re about 6 times more likely to experience a DVT than people without this problem. If you inherit the problem from both parents, the chances are much higher.
One year later, December 2015, I once again felt an intense pain in the same leg and went through the process again – A&E, ultrasound scan – but was relieved to find out it was merely a tendinitis. I had been walking a lot trying to keep fit and reduce my chances of blood problems and health issues – you can’t win! In June 2017, the same happened again. Pain, hospital, another tendinitis.
. If I jumped around, would the clot start to move? If I stay in bed forever, will more clotting occur?
In October 2018, I felt pain again in the same leg and, obviously but stupidly, put it down to yet another tendinitis or muscular problem and didn’t go to the doctor’s. However, as it seemed to be getting worse, I eventually gave in and for Halloween I went for a four-hour wait in a crowded A&E room, the D-dimer test and an ultrasound. And, bingo! I was diagnosed with another DVT. This time in the popliteal, saphenous and tibial veins, and ‘longer’ than the first one, stretching up into my thigh – thus explaining the pain whenever I sat down during the following weeks. Cue the doctor’s sympathetic words and advice not to move ‘for a couple of weeks’ and not to worry too much. If anything, of course, I spent the next few weeks worrying even more than ever! Sleepless nights looking out for the slightest indication of what I imagine a clot swimming around your veins must feel like. Distraught nights lying awake thinking I wouldn’t be so lucky this time. Added to this, all the information and scare stories I’d been Googling over the years ever since my first DVT! Plus the insecurity about when and how to become ‘active’ again. If I jumped around, would the clot start to move? If I stay in bed forever, will more clotting occur? Anyway, to cut a long story short, after a month or so I saw the specialist who told me I should be moving around, that the chief danger had ‘probably’ passed, but to stay off work until I felt ready. I was off work for three months until the first of February this year, with all the psychological issues that kind of time spent alone at home can have on a person. Now I have been put on Sinthrome for life, with monthly INR tests. And the Mediven stockings are here to stay. I’ve been told to exercise, build up my leg muscles, lose some weight, and will be called back soon for another ultrasound scan. Touch wood!
- Education and awareness. I think apart from the typical ‘Don’t take drugs, and remember to clean your teeth’ classes we (used to) receive in secondary schools, some kind of classes making pupils become aware of, or understand, different health problems which they may be seeing among their family and friends, and which will give them a good start for the future. A chance to listen to and ask health experts about things they might have heard of. Prevention, awareness, and quick action can only be helped if we learn about a range of health issues. I’d also put out more leaflets on a variety of relatively unknown health problems in hospitals, libraries, health centres and/or have GPs give them out much more often.
- Ease a patient’s worries. My chief problem has always been, and still is, the worrying. What are the chances and signs of a DVT going on to cause life-threatening damage, and what should I be doing at any time during the treatment to reduce these chances and help my recovery? And how do you stop worrying? How do you make it through the night?!
- Next time I see the consultant I need to ask her whether I will have passed this genetic tendency on to my children. Regarding exercise – what next? As much as I like, or are there limits? And whether taking Sinthrome daily now makes me Superman – that is, does this mean I now have absolutely no chance of having DVT number three?
- Use internet for research but stick to serious, official, non-alarmist pages. For detailed information, speak to a doctor in person.
- Apart from exercise (basically lots of walking), I’ve also put an alarm next to the computer set to go off every half an hour, at which point I get up, stretch, and run up and down the stairs before continuing work.
- Finally, on a personal level, after two potentially life-threatening incidents, Hollywood films seem to indicate that my life should have changed. Seen the light, opened my eyes, made huge changes to my life and ambitions or something. But it hasn’t. Once the huge mental struggle to get past this phase was over, I had no energy left to say ‘Right, live for today, let’s hit Las Vegas or climb Everest’! I’m just happy to still be here!