Ben was 22 yrs old when his VTE journey began

In July 2016 I had a long weekend travelling around Scotland with my camera and by all accounts I had a great time. I got back to work on the Tuesday and life continued as normal. A couple of weeks later I started to experience some pain in my lower back and over the next few days it rapidly got worse to the point where I couldn’t stand for more than a couple of minutes. I saw my GP who initially diagnosed it as sciatica, and prescribed the necessary painkillers, but as these seemed to make no difference I went back again and was given a stronger dose. However, this dose still did nothing to reduce the pain so I went back to my GP again a couple of days later and it was at this point when my doctor suggested that, although it was unlikely, there was a possibility of having a blood clot so he referred me to a specialist DVT clinic the same day. I went straight to the clinic where they performed a D-Dimer test which indicated that I did indeed have a clot, so I was provided with a Fragmin injection and an ultrasound was arranged for the following day.

When I got home the pain kept increasing to the point of being excruciating, and I was starting to worry so I followed the clinician’s advice and went with my Mum to A&E that evening. Once we had arrived, the pain was so intense that it took about 5 minutes to walk the 50 yards to the hospital entrance. I filled in the computerised form and took a seat but as it was a Friday night the A&E department was packed and I didn’t end up being seen until around 1:30am, 4 hours after arriving. The doctor carried out another D-Dimer test which showed more conclusively that a clot was likely present so he issued me with an additional dose of Fragmin and kept me on a ward overnight. This was the first time I’d ever been to A&E and the first time I’d had to stay in hospital, so an already scary experience was made worse by the fact that I had just been diagnosed with a suspected blood clot and not told much else. I didn’t sleep much at all that night and was very relieved to see my Mum again in the morning on the way to the planned ultrasound. This scan confirmed what was suspected, I had suffered a DVT in my right femoral vein which extended from my abdomen to my knee, which apparently is quite a big one! It was thought that the clot may have formed in my lower back, and some or all of it had then moved into my leg. I still look back at this and I’m grateful that it didn’t move any further to somewhere which could have had even more significant effects.

After the scan I was sent to the Ambulatory Care Unit where I was introduced to the world of anticoagulants. For the first week I was would be taking daily Fragmin injections alongside Warfarin, and then just the Warfarin. It was at this point where the doctor explained more about VTE episodes and how clots can form, as well as the impact it would have on the next few months of my life. I was told that taking the anticoagulants for 3 months would help to thin my blood and gradually dissolve the clot whilst preventing another one forming. I came away from this consultation feeling much more informed but still apprehensive over how this happened and if it would happen again once I stopped the anticoagulants, after all I was only 22 at the time and I was told by almost everyone who treated me that this was an unusual occurrence at my age.

The next couple of weeks I was restricted to sleeping most of the day due to the painkillers I’d been prescribed, apart from the daily visits to the nurses for INR tests. I also got into a terrible habit of watching daytime TV which was one of the things I was glad to be rid of once I’d got back to work! After those first two weeks I started to go out with my Mum in the car, mainly just to get a bit of fresh air and restore some level of normality to my day. This definitely helped as it reminded me that I wasn’t trapped within four walls and that this certainly wasn’t the end of the world, which is a thought which I think had started to creep into my mind as I was laid in bed for hours on end.

Around 6 weeks after being diagnosed I started to notice some swelling and discolouration in my abdomen, and I remember being told that I should immediately consult a doctor if this kind of thing happens as the risk is increased due to the anticoagulant medication. So I went to the sit and wait clinic at the GP the same day where I was told that I would need to go to a specialist as they believed I had an internal bleed, which of course this is not ideal when taking anticoagulants! Once I saw the specialist, he carried out an ultrasound scan and confirmed the bleed and said it was likely caused by a reaction to the Warfarin I’d been prescribed. The only solution to this was to switch from Warfarin back to daily Fragmin injections, and gradually over the next 7 days the swelling subsided. I’ve done some reading on this since and apparently this particular type of haematoma only affects around 0.01% of people who are prescribed Warfarin, so it’s absolutely typical me to be affected!

Over the next few weeks I started to improve steadily each day and visited a physiotherapist a few times in order to restore normal movement to my leg and ensure that the exercises I was provided would help to mitigate any further risk of recurrence. I’d received so much support from my friends and family but returning to work after almost three months off was a difficult experience, mainly due to the worries that I may not be able to pick up where I left off, but those concerns couldn’t have been further from reality. Initially I went back part time and gradually increased my hours until I was back working full time again, and my colleagues played a big part in helping me to reintegrate into my role.

About 3 months after returning to work, and 2 months after ceasing the anticoagulation medication, I was filing something away when I felt a sudden pain at the top of my left leg. At the time I didn’t think much of it but over the next hour my leg began to swell and feel very similar to the symptoms I had experienced only a few months earlier, so instead of going home after work I went straight to A&E where they did a D-Dimer test which indeed indicated that another clot may now be present. I was given a Fragmin injection to last the night and told to come back the following morning for an ultrasound. By this point the pain and swelling had increased to such a level that as I was struggling back to the car (thankfully an automatic!), a porter saw me and kindly offered to take me in a wheelchair.

Once I got home and sat down I think the reality set in and I was completely overcome with emotion. I couldn’t believe that this had happened again, especially as I had changed my lifestyle since the first clot by eating healthier and going swimming daily. I didn’t know how to react, and all sorts of worries and concerns started going round in my head about whether this would just be the new normal and how I was supposed to live with the constant fear of clots developing. But then something clicked in my head and I realised that there was no point in thinking like this because it’s happened now and all I need to do is make the most of the hand I’ve been dealt, so I gained a real determination to get through this and be back at work as soon as possible. This definitely taught me the importance of having a positive mindset because I’m sure that my recovery would have taken a very different course if I’d allowed that negativity and despair to consume my thoughts. That’s not to say that it was plain sailing by any means but having that positive default to return to was a very powerful tool when I was struggling.

When I returned to the hospital the next day, the ultrasound confirmed that I’d suffered a clot in my left femoral vein which again extended from my abdomen to my knee. I was again sent to the ACU, but this time I was offered a new medication called Apixaban, which sounded great as I would only need to take these tablets twice a day and it would remove the need for any injections or INR tests. I was told that I would likely be taking these for the rest of my life, as despite there being nothing in my blood tests which indicates an increased susceptibility to clotting, something wasn’t quite right so these would hopefully protect against it happening again.

I’d set myself the goal of returning to work in some capacity by 2nd January and I achieved this, part time initially but by the middle of the following week I was back to working full time hours. A few weeks after this I was discussing my journey with one of the friends who had really supported me throughout both recovery periods, and I mentioned that I wanted to make up for all the negative things in 2016 by ensuring that 2017 was a really memorable year. She suggested that I set myself a challenge so after a bit of research I decided that I wanted to raise money for Thrombosis UK and that I would do so by attempting to walk the 84 mile length of Hadrian’s Wall. Given that I’d never walked anything like this distance before, I had to do a lot of smaller weekend walks to prepare but it was refreshing to be out exploring areas of countryside I’d never been to before. As I would be doing the main walk alone, I also decided I should do the preparation walks by myself to get used to the solitude but I did have some amazing friends join me one time and that still sticks out as one of the highlights of my year.

Eventually September arrived and on the 11th I set off from Bowness-on-Solway with 5 long days ahead of me. The night before I started, my fundraising total surpassed £1,000 which was more than I could have imagined and gave me that extra boost to get going and earn those donations! Something which I hadn’t been able to prepare for was the impact of walking on consecutive days and as each day went on the pain and tiredness kept getting worse to the point on day 5 where I honestly thought I wasn’t going to be able to walk the last 3 miles. But in the end I arrived at Wallsend at about 16:30 on the 15th September. I’ve never felt such a moment of relief, and once I sat down the emotion hit and I broke down in tears. The walk itself had been so emotionally draining, but it was also remembering all the pain I had been through the previous year and realising how far I’d come since then. Throughout both periods of recovery, I’d never really outwardly displayed the mental struggles I’d faced to anyone but my Mum so I rang her and to hear her say how proud she was of what I’d achieved really validated everything I’d put myself through. It took a few weeks to sink in and understand really what I’d just done but looking back now it’s hands down the best thing I’ve ever done, and probably the most important part of my recovery. It taught me that no matter what life throws at you, you just need to gather yourself back up and prove to yourself that you’re capable of absolutely anything, as long as you believe that you are. The final amount I managed to raise for Thrombosis UK was £1,208 and I will always be grateful to everyone who donated, not only for the money but also for the support that the kind words and donations gave me.

The walk signalled the end of a very long road but also the start of another. I used this new perspective to set about improving other aspects of my life, and started going to the gym, taken up running and paying much more attention to my own mental and physical health. In May 2018 I approached the most amazing online health and fitness coach, and with her help I have managed to lose more than 4 stone since being diagnosed with my first clot.

I’m a firm believer that everything in life happens for a reason and my VTE experience proves this. Before my first diagnosis I lacked a lot of self confidence and didn’t really have much of a belief that I could achieve my goals. This experience has shown me that I am a much stronger person than I gave myself credit for and this realisation has given me the confidence to now secure my dream job, lead a much healthier life and set myself goals to achieve the absolute maximum I can. There are still challenges along the way, and I’ve experienced some significant symptoms of post-thrombotic syndrome, but I am mentally so much better equipped to deal with these so now they’re just a bump in the road as opposed to a complete roadblock.