National Thrombosis Week | 1st – 6th May 2017| Prevention & Protection from Venous Thromboembolism (VTE)

Ben Scoble

In October 2005 Ben developed a life-threatening pulmonary embolism (PE) at 28 and was rushed to hospital for urgent treatment. 7 years later it all happened again, but that time it wasn’t so straightforward. This is his patient story of experiencing 2 PEs.

Preface: My blood clotting learning curve

Ben Scoble: A Pulmonary Embolism Patient Story

Before my PEs I didn't know much about blood clots; other than knowing something about getting Deep Vein Thrombosis (DVT) from long haul flights, so-called 'Economy Class Syndrome'. The thought of getting any life threatening condition in my twenties, let alone a blood clot, would have been a ludicrous idea to me. It was something not even remotely on my radar. I felt, as many young men feel, pretty invincible. But no, I was not invincible. Despite what I thought, I was being told that I was now seriously ill with multiple blood clots in my lungs. This was shock. I have always been quite fit through playing sports or running and I hadn't flown anywhere for years. Even though I had gained weight since leaving University (classic office job weight gain) my health didn't worry me, other than trying to quit smoking. It would seem my health, as well as my youthful invincibility, was not as certain as I had initially thought.

How it began: my first PE

In October 2005 I was 28, had a stressful job, was working long hours and I was starting to feel generally a little run down. I had a week’s annual leave booked but spent most of that holiday feeling ill with flu-like symptoms and a dry unproductive cough. In hindsight, this could have been the PE starting but I do not remember getting any symptoms of a DVT, such as pain in my leg, which could lead to the PE. After my week’s leave, I went back to work still feeling pretty run down. As I was wrapping up a job contract, I ploughed on regardless of how I was feeling. However, just two days back at work I started feeling really unwell. One evening, after cooking and eating a meal, I suddenly got a really strange feeling and became unwell really quickly. My pulse started racing, there was a sharp stabbing pain in my back and it felt like air was not coming out of the right side of my windpipe. The cough I was experiencing was also different too, as I was now producing small dark blood clots. Panicking a bit, I searched the Internet for these symptoms and all I kept reading was ‘Pulmonary Embolism’ and 'Get to a hospital now!'. Heeding the advice, I got myself to my local hospital pretty quickly and they admitted me immediately. After running a series of blood tests and scans they confirmed I had multiple blood clots over both of my lungs.

My first night in hospital

Thankfully, I had phoned my mum so I had support in hospital but that first night was pretty scary. All the doctors and nurses were brilliant and made me as comfortable as possible but I was now in a lot of pain (epic pain). I was naturally freaked out by what was happening and the speed things were happening to me. All the doctors and nurses had that air of concern about my condition that just made you think 'oh, this is really quite serious' and 'oh, I actually might not get through this'. Sensing this vibe, I did ask the staff just how serious my condition was and they were pretty frank with me saying the next 12 hours were crucial. Well after that bombshell I was pretty much in full on panic mode.

My first few terrible days in hospital

After making it through the night, I did feel less stressed and the pain subsided due to the brilliant pain relief I was given. However, the next few days were actually going to get much rougher for me. For starters, the clots in my lungs were quite big and I had to get them up. The only option for me was to be patient, keep coughing and wait for them to move. Over time they naturally worked their way out of my lungs. Unfortunately, as they did move they caused some additional discomfort. One particular clot was quite large and that clot caused one of the oddest of experiences of the process.

The odd clot experience

One night I was feeling unwell again but the sensation I was experiencing was something completely new. I was feeling light headed, restless, cold and panicky. Feeling like I needed to go to the toilet, I visited the bathroom (en suite no less). As I walked into the bathroom, I looked directly into the full length mirror that greeted me and the sight I saw was quite bizarre. Staring back at me was a grey pale face with slightly bluish lips. Freaking out, I pressed the emergency button for the nurse’s station and slumped back into my bed. Next thing I remember was a nurse running into my room, taking one look at me and then running straight back out again. By now I was feeling quite vague and not on this planet. In my mental haze I remember quite a few people in my room and them attempting to get sticky pads onto my chest. Incidentally, stick pads don’t quite stick to hairy chests and pulling them off does smart a bit. Ripping sticky pads off your chest does give you some pain and a side effect of this is are brief lucid moments as you are drifting in and out. By this point I was not aware of much other than a low rumbling, gurgling sensation in my chest and I started to cough. As I coughed I gave out a deep echoing burp and produced a very big clot. As the clot came out, I felt an overall sense of 'and now you're back in the room' and I suddenly gained the mental clarity and awareness I was missing. By all accounts I quickly flushed pink. Even though I'm not totally aware of what happened, I am pretty sure it was a big clot pressing against my heart. Perhaps this big clot was giving me cardiac problems as it moved up and past my heart? I'm not quite sure and didn't ask, but It was a rather bizarre experience.

Things actually get worse for me

Hospitals are commonly known for terrible food but fantastic care. Unfortunately, they are also known for hospital acquired infections and yes I got one. My infection came in the form of Clostridium Difficile (C. Diff) a particularly nasty infection that causes horrendous cramps and diarrhea. Rather than go into the really graphic details of what it was like, I will let you look it up. The problem, as far as I recall, was that I was given a broad spectrum antibiotic that didn't stop C. Diff. As there was no competition, C. Diff. took the opportunity to take over my body. Suffice to say, I was now in even more discomfort so sleep or rest was not an option. One issue was that I had to finish the current course of antibiotics before starting one that would attack C. Diff. C. Diff. and I were thankfully no longer acquaintances after 2 days and I got back to recovering from the PE.

Getting out of hospital

I spent a total of 13 days in hospital and was beginning to feel better, if not a little weak and frail. Staying in hospital that long and because of a serious illness does strange things to your brain. You may think I was itching to leave hospital and get back home but I wasn't. The problem was that hospital meant safety and the thought of leaving and recovering in my own home, on my own and with only my cat for company was a little daunting. Thankfully, I went to my parents for a few days rest but I still had to get used to the idea of recovering on my own. By the condition I was in when I left hospital I did feel like it was going to take a long time and it did actually take a few months.

In respect to the process of leaving hospital it really is quite abrupt. Up to that point you get into the routine of choosing your meals, having regular health checks, daily visitors and looking forward to the tea trolley coming round. All very predictable. However, one day, someone does come to you and say that you are free to go home. You are asked to get your civilian clothes back on and prepare for discharge in the afternoon. So you sit there all packed and ready to go. You’ve phoned your mum to instruct her to come and collect you later and you wait. As the time for leaving approaches, a porter comes to visit you, you get into a wheelchair and visit the nurses station. Someone discharges you and gives you a few documents and a plastic bag. As you are wheeled out of the ward and to the front reception of the hospital you interrogate the various documents and items you have been given; an orange booklet (with a date you must attend your next INR clinic [whatever that is?]), a letter, info leaflets and various drugs you know you’ve been taking for the past few days (complete with dose instructions). That’s are now free!

Recovery, life on the outside and back to normality?

Recovery for me was more mental than physical. Your body is pretty broken after a PE and it’s not working as it should. Breathing is ok but not without the odd ache or pain. Overall you feel 98 years olds rather than 28 and quite vulnerable.

The first thing I noticed was just how tired I was, all the time, and by tired I really mean super exhausted. A typical day, for the first week at least, would be to get up and shower, then eat some food and sleep for 3 hours. Follow this with a spot of lunch and then sleep for another 3 hours. Finish the day with a light evening meal and then sleep for another 3 hours, only to wake for a quick cup of tea and then sleep till the morning. And repeat. As you can imagine, this meant I was a bit mentally foggy and I’m pretty sure I was experiencing depression or posttraumatic stress disorder (PTSD). I remember during the second week out of hospital I went to see a kid’s movie during the day at my local cinema. Although it was good to be outdoors, I did experience an enormous panic attack half way through the film, but managed to hide it from everyone. However, I learnt quickly that hiding my feelings and trying to act strong wasn’t good for me and I quickly found it useful to share my concerns. This helped a lot and I still continue to share my experiences in online social media forums and of course in this patient story!

6 months after the PE and getting answers

I was on blood thinners for about 12 weeks after the first PE, so attended regular Warfarin INR clinics. These clinics were important but difficult as it reinforced my isolation and vulnerability. Every patient I met was either nowhere near my age, retired, had someone with them for support or had just not gone through what I had gone through. However, the other patients were friendly and we shared 'war' stories. Many patients and medical staff would ask me why I had got blood clots and a PE in the first place. I didn’t know, doctors hadn't told me and no-one was telling me. To get answers, I used this recovery time to enquire about blood tests to find out what was wrong with me. After I finished the Warfarin treatment, I had a battery of tests through my GP. The verdict? We don’t know. Perhaps it was a fluke. I was too young, too male, too fit and too healthy it would seem. So with that verdict and clean bill of health, I came off Warfarin and started exercising, eventually running 10k again. The PE was seemingly an unfortunate blip, so I put it all behind me. Well not quite. I still couldn’t get to sleep without the radio or TV on. It was the noise. In hospital, when I rested, if I could hear a radio, TV or people talking - I was still alive!

7 years out and it happens again!

Paranoia is a good (and bad) thing in my life post PE. Many accused me of being a hypochondriac but that would be their assessment. I would call it proactive risk assessment and it proved a brilliant strategy in October 2012 . Yes it is weird, that is 7 years later, almost to the day, since my first PE!

Is it happening again?

It's October 2012 and I'm enjoying my birthday. I'm fitter than ever and yes I quit smoking many years ago. Work is stressful (trigger?) but all is fine with the world apart from this nasty dry cough I’ve had for a few days. The cough wasn't so bad as to stop me from running but it didn't help. Even after mild exercise it felt like I had asthma. The cough itself was worse in the evening and during the night, giving me fits of coughing that didn't produce anything. The whole thing was starting to make me feel a bit run down, tired and my lungs just felt 'peppery'.

OMG a PE!?

After 3 days of feeling a bit rough I woke up and had a shower. Whilst brushing my teeth I coughed and would you believe a small round dark clot stared up at me from the sink basin. Yikes! Like some kind of movie style flashback, I relived my first PE and did a quick assessment. Verdict? How could I have not worked this out sooner? This is a PE! Dry cough, feeling rough, tired, achy chest and now coughing up clots. With that assessment, I made an urgent appointment to see my GP. After agreeing that it looked like a PE, my GP sent me off to hospital (via ambulance as a birthday treat, but no sirens!).

From PE to Pleurisy and back again

After being triaged in A&E, I got to see a doctor who did a series of blood clotting tests and other health checks. I explained that I'd had a clot 7 years before and was fairly sure it was another PE, as my symptoms were very similar. In addition, I was beginning to notice a small stabbing pain in my back (left outer rib cage), only small, much like a stitch or a pulled muscle, but noticeable. After only a few hours of being in A&E, my test results came back and the verdict? I probably don't have a PE, it's probably more likely to be pleurisy. Ok I thought, that's feasible. All the tests have been done and were fine, so I took the prescription for painkillers and antibiotics and heading off.

After 24 hrs I was not getting any better, in fact I was getting quickly worse. I was still coughing up clots and the pain in my back was spreading. I was getting more uncomfortable by the hour. I was not totally convinced on the pleurisy diagnosis, so I went back to A&E. However, after going through all the tests again, the diagnosis remained the same; Pleurisy. Perhaps I was wrong? But what if I wasn’t wrong? Ok I thought, don’t panic and act normal. So I went shopping for a microwave. Fortunately I bought a microwave, but unfortunately for my mum our birthday shopping spree was cut short by me feeling breathless and weak. I was not feeling at all well.

Another 24 hrs passed and I was now on day three of the 'PE diagnosis limbo' and getting no better. Trying to act normal (after taking painkillers of course) I went to visit my gran, a short walk from my parents’ home. The visit really only lasted 10 minutes as during a cup of tea and a chat I became fully aware that my pain was going off the chart. I urgently had to leave. I made an excuse to my gran about my pain medication wearing off (nope, I’d just taken a load) and that I needed to go home to get more. I left and walked calmly up the road. On reaching my parents' kitchen I just stood there gripping the back of a kitchen chair and stared, eyes wide, at everyone in the room. My parents and my visiting sister's family, who were enjoying breakfast, asked 'Are you alright?'. I could not reply easily, only managing to mouth a few words at a time. I could not speak or breathe properly. I simply mouthed the words 'No...Mum...get the car...we need to go A&!'. Mum rushed me to A&E and I walked up to the main reception. I managed to book myself in, slowly, pausing at every word to take in a sharp intake of breath and to suppress the extraordinary pain I was in.

Thank you CT it's a PE

Being in obvious extreme pain get's you treated quickly in A&E. The doctors soon realised that a CT scan would be best option to see what was going on. Well they were certainly not going to send me home in the condition I was in. So I had a CT scan and yes it confirmed another PE. I was right! OK maybe a pyrrhic victory but we had a clear diagnosis. Now you might think I’m angry at the delay in diagnosis but I’m just thankful we got there and diagnosis can be tricky. If there are lessons to learn, I think the doctors that I met at this time have learnt them and one doctor did apologise for not spotting the PE earlier.

Recovery (again) and becoming a 'Lifer'

So PE #2. Recovery this time was the same as before but with slightly less PTSD (oddly). I came out of hospital within a week, no infection. The only difference was that I needed to do the whole self-injection routine of low molecular Heparin, which stings a bit. I got back to full health within 6 months and I was running again. Life was back to normal again.

As I have had two PEs, I am now instructed to take blood thinners for life. I hated the regime of taking Warfarin, there was never a good time I could go for INR check ups as I work. Also, managing the dose, food and alcohol management was a chore. I am now on the alternative drug Rivaroxaban / Xarelto. I have a life more like I did before my first PE. Only 1 pill daily and an annual general health check up. I continue to be healthy but I am still exploring why I clot. Perhaps a new test will be found in the future. After experiencing 2 PEs, I actually feel very very lucky. It could have been much worse. I have since learnt that many have serious complications from just one PE episode that changes their lives forever.

I send my best to everyone who has gone through or just experienced a PE. I only hope the experiences I have shared have been valuable.