To begin with – something about me, 61 years old (May ’57) non-drinker, non-smoker – try to keep myself reasonably fit through regular recreational cycling (sportive events etc) – and in last 5 years or so have typically done 8,000km or so a year - not massive mileage – but enough to consume a fair amount of the warm weather months. 5’8” tall – 76-80kg depending on time of year 😊 – typically – but about 5kg over now due to events of last 5 months or so!
BP always pretty normal (check myself regularly) and resting HR of 39 on a very good day and 43-45 on a normal day. Have been pretty active all my life, and other than rugby related traumas (!) have never really suffered from any major afflictions until a few years ago (58/59) I was diagnosed with asthma. Had been struggling with allergies and a chest infection every few years, and had an episode of breathing problems which ended up in A&E. Anyway – 2+ years on and my treatment regime of Fostair (formoterol/beclometasone) + montelukast had pretty much revolutionised my existence – easy breathing even on the most pollen laden days, and able to sleep through the night – no more waking with coughing episodes.
in the space of just over 2 weeks – we spent at least 39 hours in aircraft seats
The Travel Journey 26/10/18-11/11/18
So, in late 2018 – having logged 277 riding hours and 7000km – my wife Sarah and I boarded at LHR for Argentina to visit our son – volunteering there as part of his year abroad (language student). It was 26th October – and was a long haul of 14 hrs. As I had done a lot of long haul (my BA account tells me I’ve flown 1,139,184 miles with them alone!) I took the usual precautions – flight compression socks and drank water regularly. We were in Argentina until 11/11 – traveling to Patagonia (3.5hr flight), up to Iguazu (5.5hr flight), back to Buenos Aries (2hr flight) before arriving home on 12 November after another 14hrs. I had never added it all up until last week – in the space of just over 2 weeks – we spent at least 39 hours in aircraft seats.
The Diagnosis Journey 19/11/18-13/12/18
Back to cycling for a moment – for the last 6 years, I have traveled to S Africa in early March to ride the Cape Town Cycle Tour and another event (Cape Rouleur for last 3 years) in order to raise funds for a charity I support. Getting back home – everything felt and looked normal other than a bit of jetlag due to the time difference, so I had planned in a training programme starting a week later on 19th and running for the next 14 weeks.
On Mon 19th I did my first session on the indoor trainer – had planned a short interval session of 3 blocks of 5x30sec efforts with 30 sec rest. It went ok – but I felt a bit rough breathing wise, and my power was lower than I expected (by about 20% when I checked later). I was planning to warm down for 30 mins – but had to message Sarah to bring my salbutamol inhaler – as breathing was difficult. I took 2 shots and gave the warm down a miss. Later in the evening felt fine.
The next day 20th – I had another short interval session planned – I took salbutamol prior to the session – but felt so bad that I only managed the first set of 15x10sec efforts. It was obvious I was getting an asthma episode as breathing was hard work. My asthma tends to creep up on me over days – I get a lot of clear mucus and plugs (a bit like superglue) and peak flows drop way down. I’m normally 660/670 – but on Wednesday morning I was at 520 – no real sign of mucus/congestion - but low enough for me to put a stop to training. I was getting reasonable relief from my inhalers – and so didn’t think too much of it at this point. On 24th November – I had planned to share the driving from Guildford to Lytham St Anne’s with my daughter, so had what turned out to be a seven hour journey, followed by a train journey home on 25th. By Monday 26th I was struggling badly again with breathing so began my course of emergency steroids
– and planned to call my GP if I didn’t get relief after a couple of days.
I awoke with an enormous pain in my right calf. It felt like the calf was torn/cramping
It seemed to work, and by day five I was blowing about 600 – so thought I would leave until the following week and try to restart training. On Tuesday 4th December – started what was supposed to be a two hour ride … lasted just 20 mins …no energy, HR was high relative to the complete lack of power. On Friday 7th we drove to Lytham for the opening night of our daughters show – everything still fine other than my “asthma” – but after the show I went to bed in our hotel shivering – even though the room was hot (strange at the time …but looking back perhaps not so). We shared the driving on the way back on 8th. I was still feeling too tired to train, but my peak flows were 610/620 so thought I was on my way back to normal – then 2am Tuesday 11th I awoke with an enormous pain in my right calf. It felt like the calf was torn/cramping – and the pain had its centre at the exact spot of some previous scar tissue. Some years ago – I had partially torn the muscle/achilles insertion – and I had hard lumps and some muscle loss where it had occurred. I tried every release I knew but was awake the rest of the night with pain – nothing I did made a difference.
At 6.30am we called 111 – who referred me to my GP within the day. I went to the GP early afternoon and wore the orthopaedic boot I still had – as it seemed to provide complete pain relief. The leg was slightly swollen - but only to my eye – as I know it to be normally smaller than my left calf due to the injury. It wasn’t hot, wasn’t red, all of my vitals were normal (BP/HR/SATS/Temp). It wasn’t too sensitive to touch. When asked if I had flown recently, I said “No” – after all – it was a month ago!
The leg was incredibly painful, more swollen and I was only able to walk a few metres, and the Drs told me I was “very positive” on D-Dimer
I talked the GP through my old leg injury, and he could feel the scar
tissue. We left it that if it got worse, I was to call again. On Wed
12th – my leg wasn’t any worse, but I developed a severe breathing
difficulty when walking and severe pain at the margin of my ribs and
feeling under my sternum as if I had a lump. We called 111 who sent
paramedics – who checked me over, ran ECG (normal) HR slightly elevated,
gave me GTN and then took me to the local A&E in Oxford. They did
all of the expected checks on vitals, ECG and took bloods – which came
back with a +ve D-Dimer and said they couldn’t exclude a clot so gave me
10mg of apixaban. We even had a chat about Bayesian Statistics! I had
pretty much recovered from my breathing issue – SATS were normal so I
was sent home to return next day to AAU for CT and Leg Ultrasound.
Thursday 13th – we went to the hospital for 10.30am. The leg was
incredibly painful, more swollen and I was only able to walk a few
metres, and the Drs told me I was “very positive” on D-Dimer – which
suggested clots. I asked what “very positive” meant and they said 18,000
– which didn’t mean much at the time. Leg ultrasound showed clot from
calf to mid-thigh – with the thigh material being quite soft. Chest CT
showed multiple bilateral PE’s. The doctor talked me through the
diagnosis and mentioned the signs of heart strain. (I understand enough
anatomy and physics to know if the pulmonary arteries are obstructed,
pressure is going to increase, and this will impact the right heart).
So, with this news – I was given enough apixaban for a week (for me
this was 10mg morning and night) and told to get in touch with my GP for
repeats, and I would receive a clinic appointment in due course. I also
received some codeine tablets for pain relief.
The Beginning of The Recovery 14/12/18- 3/3/19 ongoing!
This is where the voyage of discovery began. I spent the next few days pretty much resting in bed – the leg was so painful I found that ice packs were the only relief. I tried to exercise my leg with raises and muscle exercises …just to get some movement.
By Sat 22nd I was well enough to lie in the back of the car to journey to Blackpool – with regular stops for short hobbles around the service areas.
We spent Christmas week in Lytham seeing our daughter in a Panto …. and during that week, I was able to do a couple of walks – 2km or so on Christmas Eve.
I got tired and breathless – so each walk would need to be followed by at least an hour of leg elevation (and sleep 😊). I tried some tubigrip to ease the pain. We travelled home on 27th and Owen arrived home on 28th. We began walking together each day – and by Jan1 we completed a 3km loop around the villages.
I went back to the AAU and they did another chest CT – where it showed the clots much improved and no sign of heart strain – this was a good confidence booster
Being a bit OCD I logged these in Strava (a training log) and looking
back I can see I walked for 20 hours and 116km in Jan, and I was
feeling quite pleased with myself during the month. Every 3km lap had a
climb of 500m at 6%, so had to make an effort to get up it. I was aiming
to walk at about 6kph – so quite a decent pace considering. I wore a
HRM for some of the walks as I was conscious that I didn’t want to push
my heart too hard. I did have some side effects from the apixaban – 2
incidents of bloodshot left eye, and a week or so of fairly severe
nosebleeds – more messy than worrying. I also had a fainting episode in
the middle of the night on 24th Jan – which actually resulted in good
news. I went back to the AAU and they did another chest CT – where it
showed the clots much improved and no sign of heart strain – this was a
good confidence booster. I carried on walking in early Feb. I had
decided to leave it eight weeks before I tried to do anything that might
be considered more than gentle exercise – so in week 9 on 13/2 took the
plunge and rode for 1hr/30km on my trainer followed by another 32km on
17/2. The next week I rode outside for just under 2 hours each time –
covering 45km and 41km, then on 25/2 (w11) I rode 73km and back to my
favourite coffee shop in Fairford. Was really tired – but this was a
massive morale boost to me. I began to realise that i can maybe get back
to being me again! I rode again for 42km on 27/2 ….and am feeling ok
still. I had an echocardiogram on 26/2 as part of follow up to the
faint, and everything looked normal per the verbal report – so that was
another confidence builder.
If I reflect on the physical side of the recovery over the last 12
weeks, it seems remarkable to me how well I appear to have recovered (so
far – fingers crossed). I can sort of measure where I am – my resting
HR is a bit elevated (49-52 at moment as opposed to low 40’s) – BP is
same as always, HR under exercise is more elevated for any given power
effort by about 10-15bpm, and power is down by about 15-20% on the bike.
However – I get very little leg swelling – which I attribute to the
walking efforts in Jan which I am sure helped develop collateral
circulation (I have more visible superficial veins).
I have had a reaction in my lungs after each ride – feeling a bit
congested – but it has cleared within 24 hours… the next step is to try
to ride three times a week and try to build up some endurance without
going “full gas” anywhere 😊
Understanding DVT/PE VTE … the illness, the support, the process… what do I think I have learned.
- The NHS
I have learned that despite everything, I am fortunate to have experienced first- class care and attention from my first contact with 111, my GP, the paramedics, and the OUH staff that have diagnosed and treated me with various interventions. I can’t thank them enough.
- I am lucky!
I had to tell my son and daughter (twins) over the phone what had happened. The next thing they do is hit Google and then the anxiety starts. My son was in Argentina, so the distance made it worse. I said to them both – “This incident hasn’t killed me – so its probably not going to”. Not only did I believe this – but I had already started reading clinical papers online – and it seems to me that the first part of surviving this disease is being lucky enough not to die before you get diagnosed. I know this sounds like a simple truism – but to me its at the heart of the challenge …… how to recognise signs and symptoms of VTE for what they are early enough, so that you actually get to meet a medic. If you can get to meet a medic, you are already on the right side of the statistics.
- For some survivors – the anxiety is as much of an impact as the physical
I have joined a few online communities, and its clear that many VTE patients live in constant fear of the next clot or dying suddenly from their current one. For whatever reason – my own personal makeup means I am not affected in this way – but it is clear to me that much more attention needs to be given to this and helping patients along this recovery.
- DOAC’s are such a simple treatment that they don’t seem anywhere near enough “treatment” for a life-threatening event
“I could have died – what do you mean I just take these tablets for 3 months?” This might sound odd – but in the first day or so I was thinking – this can’t be right, I must need more investigation, more treatment, more anything?” Then I began to read more papers, and the OUH treatment protocol and realised I was getting the gold standard treatment – it was going to work, and I needed to focus on the things I could do to maximise my ultimate recovery point – whatever that will be, by mobilising and exercising. I think that it would have helped if the treatment regime had been explained with more confidence about its effectiveness, rather than just the compliance and possible side effects to be alert for. I know that this is a difficult balance for a medic to strike, but immediately after diagnosis – patients are at the bottom of a very long and steep hill, encourage them that they will be able to climb it.
- I wouldn’t have picked up my symptoms earlier – or would I?
When I look back it becomes obvious that I had done a huge amount of air travel in those 2 weeks – I had respiratory symptoms – but I thought it was asthma – my SATS were never low either measured or just by looking at my appearance, at rest I was fine breathing wise. My leg was fine until a month after returning home. If I hadn’t had asthma – would I have contacted a doctor? I don’t think I would have ..yet in hindsight it all points to a DVT and PE’s building up over time. It seems to me that D-Dimer/CT/Ultrasound are incredibly effective – but that they are way down the line of events. I hope one day that there are some earlier diagnostic mechanisms available …. How can we get more patients meeting medics in time?
- Its hard to know how hard to exercise
I know this is a difficult and grey area – and so what I say here comes from a trial cohort of 1 and is completely unrepresentative. I was used to exercise, and a degree of discomfort having played rugby to a high level in my earlier life and kept fit for many years by cycling and rowing. So, for me – I walked until my DVT leg hurt and then kept going as long as I could. I was working to the principle that the issue in my leg was simply mechanical – I was driving a lot of blood in, and it was going to hurt until it had made some new venous pathways back, and the sooner it did that the better it would be in the long run. Its not exactly a proven scientific study - but to me it’s logical …and hey, no one gave me any better advice.
Lungs and heart were a different matter though - I didn’t want to load up my heart unduly, and I didn’t want to end up coughing up blood either – so the regulator to the above was my heart rate. I didn’t want to go banging pressure into my pulmonary arteries, and stress up the right heart so if my HR went above 115 I just eased off. I’ve been exercising for a long time – and I know my zones pretty well -and I was able to walk well and still hold a conversation keeping my HR between 100-110.
From things I read in support groups it seems a lot of survivors take the pain in the leg on exercise as a sign that they are causing damage and need to ease off. We are all different, physically, mentally, and how these events have impacted – but personally I think this would be a really valuable area to study and provide more guidance, and potentially improve outcomes.
- Schedule a phone call
I’ve been lucky – my GP called me, my GP has taken an active interest, I’ve had some events that have prompted more contact. If someone is on DOAC’s for 3 months – don’t send them home with a clinic appt for 3 months time (or worse – send it several weeks later) – treatment pathways need to include human interaction not just pharmaceutical or surgical. The contact follow up I received helped enormously – a few words - just knowing you are on the radar helps.
- I don’t know where I am going to end up – but targets help
I don’t know if I will be able to ride the distances I used to …I am targeting Cape Town in 2020 where it will be 750km and 7000m vertical in the week. It’s a target, and I am a long way from it physically- but goal setting helps. I haven’t discussed this with anyone involved in my treatment – and maybe its not relevant …. but maybe it is. It doesn’t matter what the goals are – but mental recovery from VTE needs to be about much more than being alive to tell the tale, every patient / survivor should have them -why not have physicians share in them?
- Lots of people aren’t as lucky as me
I know a lot of people suffer DVT/PE as a post-operative complication, making it an even harder recovery. Dealing with the impact of this can be incredibly difficult as many patients won’t be able to mobilise in the way I have been able to. I don’t know what sort of work can be done to support patients in this group but it would seem an incredibly important area to continue to develop ways to help.
- I don’t know what I don’t know …Its March 2nd as I write this – having been formally diagnosed on Dec13th - so it’s all happened quite quickly. I am sure I still have a lot of ups and downs to come and things to learn – I hope that these notes help in some way.