11 months on…

I am asked frequently about my cardiac arrest in August 2015, and my subsequent recovery/rehabilitation, so I thought I’d write a short post on it:

I’ve never been particularly athletic or competitive, and it’s only since I had a health scare during mid-2012 that I started taking steps to get fit.

Where did it begin?

I suspect it all started in 2010. We’ll never actually know for sure, but during 2010 I contracted a really severe flu. So bad that I was genuinely struggling to breathe and was bed bound for about 2 weeks.

I did no exercise, and was fairly sedentary at work at that time. Although I ate organic food, I really wasn’t watching my diet, and was content with being overweight. I think I weighed about 108kg (17st) at the time.

In 2012 I’d got a new job in Cambridge and part of the on-boarding was to do a “fit for travel” assessment. Part of this assessment was a urine test and blood pressure measurement. The nurse came back saying that I had to see my doctor because my blood pressure was elevated and my urine showed protein leak. So I booked an appointment, expecting the nurses concerns to be dismissed.

My doctor explained that the sticks the nurses use are unreliable, and that they would get a fully validated lab test done, to confirm. And it did. I was leaking a lot of protein in my urine (a sign that my kidneys were damaged), and my higher than normal blood pressure was a result (the body trying to flush any obstruction in the kidney out). The doctor prescribed some hypertension medication to reduce any damage being done to my kidneys and referred me to a Nephrologist (kidney doctor). The Nephrologist ordered a gamut of blood, x-ray and other tests to attempt to diagnose what was wrong. Ultimately they concluded that I likely had IgA Nephropathy, an immune condition sometimes triggered by a severe flu in the past (Hmmm…), however they were unable to perform the kidney-biopsy necessary to conclude this diagnosis due to me having a horseshoe-kidney.

So they started putting me on more medication to prevent scarring on my kidneys and to also get my blood-pressure under control. It was then that I realised that my weight and diet were probably contributory factors to my blood-pressure, and so decided to start some regular exercise.

Three colleagues regularly went to the gym at lunchtimes in Cambridge, and so I jumped on the opportunity for this change in regime. Although the weights, rowing and cycling were fun, the treadmill was the activity I found most effective, but also frustrating. I was very body conscious about being over-weight, and so was basically working out in a thick sweatshirt and long tracksuit trousers. I was losing a little weight, and my dietary changes were helping, but I needed to do more. During September 2012 my boss at the time suggested running around Cambridge at lunchtime rather than going to the gym. Again, I was very conscious of parading my body in front of the public, but reluctantly strapped on some running shoes and headed out.

I haven’t stopped since really. I did see back then that there was a “parkrun” being set up in Ipswich, but the thought of running with 100 people (all of whom would be much better than me) was too much pressure. I carried on solo running round Cambridge and Ipswich till about mid February 2013. I’d got to the point where I could run-walk a 5km, and so dropped into Ipswich parkrun on the 16th February 2013 with a friend.

Parkrun #22 - 16th February 2013 [Me running with Lucy Driver and Matt Bird]

Parkrun #22 – 16th February 2013 [Me running with Lucy Driver and Matt Bird]

Ipswich parkrun #22 - 16th February [Me getting my first runners briefing]

Ipswich parkrun #22 – 16th February [Me getting my first runners briefing]

I wasn’t reacting to my blood-pressure medication very well, and so we continued to increase the dosages to try to get the effect we wanted and manage the side-effects. Two of the side-effects that affected my running were reduced oxygen uptake by muscles and some orthostatic hypertension (dizzy when standing up). I was altering my diet, and was losing weight which was helping with my blood-pressure. It felt like the more I was losing the battle with my exercise, the more medication I was having to take, which meant I wasn’t able to exercise as much. It was frustrating. I was trying to do the right thing.

Mid 2015

I was beginning to suffer with some heartburn, and so was given some medication called a Proton Pump Inhibitor (PPI) by my GP. PPI’s reduce the acidity of stomach acid by about 95%. I would take the PPI the night before I was due to run, and everything would be fine. I didn’t need to take them all the time, maybe once every week… just when it was getting severe.

August 21st 2015

I was trying to get some longer distances in, and so did a 15miler in the morning. Nothing out of the ordinary. Everything seemed fine. I was on holiday so relaxed for the rest of the day.

August 22nd 2015

Ipswich parkrun in the morning, lunch with my son in Colchester, then home to tinker with my drone and clean the bikes up ready for SkyRide the next day. Sleepy time…

August 23rd 2015

As has been well documented, I suffered an unprovoked and spontaneous cardiac arrest while asleep at home at about 2am on the 23rd August 2015. Every minute after the 3 minute threshold that the brain is without oxygen, it begins to die exponentially. It is estimated that I was without oxygen for somewhere between 5 and 15 minutes. Regardless of whether my wife was able to revive me or not I would have some long-term damage to my brain and or other internal organs. She was miraculously able to revive me… twice, before the the paramedics arrived. They were on site very quickly to defibrillate me back to life before then whisking me away to A&E and then into Critical Care.

I really remember nothing of this or the following few weeks. I have glimmers of memories of people coming to see me in hospital, but I find it really hard to recall anything at all. Apparently I ordered an Indian Takeaway from my bed-side, which does sound very like me!

I do know that every test under the sun was conducted, and they were all inconclusive. It really was idiopathic in as much as there didn’t appear to be any underlying cause to my cardiac arrest event.

My appetite was almost non-existent and I was very short tempered with family, friends and medical staff. My wife says that my personality became very selfish (apparently quite a common thing to occur) and angry. One interesting physical observation was that my resting heart-rate was very low (40bpm) and would set the nurses station alarms off all the time during sleeping hours.

During those two weeks in hospital all I was talking about was when I was going to run again.

I was moved to Papworth Hospital for further tests, and the insertion of an Implantable Cardio Defibrillator (ICD), more as insurance against it happening again than for any other reason. Essentially it’s a box about the size of a cigarette packet under my left shoulder. There’s a lead trailing out of the box into the centre of my heart. The ICD monitors my heart rhythm for anomalies and does the following:

  1. If my heart rate drops below 35bpm (usually this is 45bpm, but they’ve reprogrammed because of my normal low-resting heartrate/ Bradycardia) it will pace my sinus rhythm back up above this threshold with little electric shocks.
  2. If my heart rate exceeds 180bpm, it starts detailed recording.
  3. If it goes above 200bpm it starts charging.
  4. If it goes above 220bpm it gives me a big shock to defibrillate me.

The battery in the ICD lasts about 10 years, but they usually look to replace it after 8 years. They just replace the box, and leave the lead in situ.

The cardiologist there explained to me though, that as a result of my event I should put out of my mind any ideas I might have of running again. This really put me back, and got me quite upset, as it really was the benchmark I was using to regain my fitness.

I was back home to recover from the surgery on the 5th September 2015, ready for my 39th birthday on the 6th, but was still quite sore and suffering with acute memory loss.

Regardless, I returned to work in early October (part-time). I work now by the waterfront in Ipswich, so can walk from my home in West-Ipswich to work, and it’s about 1.7miles. Quite a reasonable workout, and gets me my 60mins of easy exercise a day, allowing me to build up strength.

The cardiology team had changed my medication to include beta-blockers, so that they could control any arrhythmia. This lowered my maximum heart-rate by about 15bpm to 171bpm, and my resting heart-rate was down to about 38bpm. They made me very lethargic, and somewhat frustrated due to lack of energy and having to sleep all the time. This had obvious knock on effects to my home life, and my family. Emotionally it has been very tough on everyone close to me; probably tougher on them than it has on me.

October 2015

I went for a flu jab in the late-morning at my doctors surgery. Because of my IgA Nephropathy, it is advised that I get this annually. But by late-afternoon I was having very strong flu symptoms (coincidental, but unrelated to the jab). We called 999 and I was back in hospital, this time with a kidney infection. They gave me antibiotics to help fight off the infection, and within a day or so I was making good progress.

November 2015

In November I was offered the opportunity to start a 6 week programme to start cardiac-rehabilitation. This is a gentle and controlled environment where people who have suffered a cardiac event (cardiac arrest or heart-attack) are able to exercise to regain strength and confidence. The first time I attended I was very nervous, like the first time I stepped out on to the Cambridge streets with my running shoes on, but over the weeks and the encouragement from my wife and the professionals there, I really excelled.

Under the guidance of the Cardiac Rehabilitation team I was permitted with controlled parameters to run my first parkrun. I wasn’t sure right up to 8am that morning if I was going to be able to do it. What if there was a problem? Am I being selfish? Am I fit enough already? Suffice, it went without a hitch!

Parkrun #164 - 14th November 2016 [My first parkrun since August]

Parkrun #164 – 14th November 2016 [My first parkrun since August]

2016

After a small hiccup A&E attendance over xmas, I was back to running again on the streets in early January. First with the help of several fellow FRR and Ipswich parkrunners, and then slowly on my own. Proving the cardiologist at Papworth wrong, and busting some 5K PBs in the process. It was very exciting.

My wife was still very nervous, and so I promised her very early on that I would participate in no more than 3 races during 2016.

Gary Jarvis, Adele Chaplin and I arranged the Hard and Fast Relay, which was a resounding success on all fronts. Thank you to all those who participated, and got involved, it was a wonderful way to support some of the organisations who had helped me, my wife and family get to where we are today. It’s a poignant reminder to the fact that so many don’t survive and less still survive with the quality of life I now have.

JJ and Adele waiting in Claydon for the Hard and Fast Relay

JJ and Adele waiting in Claydon for the Hard and Fast Relay

I now weigh about 91kg (14.3st) and aspire to get to about 88kg (13.8st) before the end of 2016, which will put me squarely in the normal zone for my BMI.

Thinking back

The one symptom of my event that just does not appear to be making as good a recovery is my memory. My memory is utterly shot. I genuinely remember very little of 2015 since August (just a few glimmers), and some of those have been since proven to be false memories. Even when prompted, I cannot remember my birthday in 2015, either of my daughters birthdays, Christmas or my wife’s birthday this year. I try to take photos whenever I’m at out-and-about, as that’s the only way to jog my memory. I cycle through them all most evenings to try to keep remembering, like memorex.

So if you did help me during my recovery, and I don’t seem to remember. Or I don’t appear to recognise you or remember who you are. I’m not being rude, I simply don’t remember. I have had people in the street, at parkrun or even at Tuesday sessions come up and shake my hand and tell me how good it is to see me up and about, and I really have no recollection of who they are. It’s difficult and socially uncomfortable. It should get better, so bear with me, but it’s likely those memories are gone for good.

I did finally get my Neurologist appointment recently (June 2016). He is very happy that my general progress is good, and I appear to have regained most of my brain function. This is likely in part a result of the Sudoku and Rubik puzzles I was doing while in recovery, as well as general brain-plasticity in someone my age. He has referred me to the Addenbrookes Memory Clinic for further examination, and an MRI to assess what long-term damage may have been caused.

The End… So what’s wrong with you now?!

In early May I started to struggle again. I started noticing a tightness across my chest when I was running. After a couple of dips into hospital, it was decided that my issues were not cardiac related, but likely related to digestion. I was referred to a Gastroenterologist who prescribed some medication to help manage the symptoms, but also asked for some further examinations. This was just before the Woodbridge 10k… I remember, because the Gastroenterologist was also running in the same race!

At the same time I went to see my Papworth Cardiologist who was elated at my progress, and recommended coming off the beta-blockers. Both my wife and I were relieved about this, as they were making me very tired and grumpy. Most days I was up at 07:00, but then after work, I was back in bed for 1730, not much of a work/life balance.

The first 2 weeks of withdrawal from the beta-blockers were ok, but the following 4 weeks were very uncomfortable. Constant headaches and general flu-y symptoms. But my bpm was back to where it should be… and I was on less medication than before August 2015. I was given the green-light to return to running, so long as I monitored my heart-rate and was sensible.

During June I asked my GP if I could start taking the PPI’s again to control any heartburn. He said that this was ok in moderation, and so I started taking them once every week (usually before parkrun). However, my symptoms became gradually worse, to the point that I needed to take the PPI before every run I did regardless of effort. And while it would control the burning sensation, I generally didn’t feel as energetic as I did. My performance started to take a hit.

You need the acidity in your stomach to help break down the food, so as I started to take more of it, my ability to draw out essential nutrients from my food was reduced. I tried to adapt my diet, and time my PPI doses to optimise, but it wasn’t an exact science.

It all came to a head at Ekiden. I’d taken my PPI the evening before so I was set. I cycled out with Robin early to secure a good spot for the FRR Pavillion, but was loitering until about 11:30 before I was due to run. Adele’s scotch eggs were grinning at me, so I scoffed one at about 10:30.

The pre-Segment C Scotch Egg

The pre-Segment C Scotch Egg

On my segment I ran for about 0.5 miles, and suddenly the burning sensation was back really strong. I’d missed the water station on the first lap by then, but thought there were other opportunities for water on the route… there weren’t. I was feeling really bad and walked in my first lap, desperate for some water. I managed to get two bottles down to cool my stomach off on the second lap of my 10k, and could return to a moderate jog, but not the racing form I’d anticipated, and with the heat I was really struggling. I ended up vomiting twice, but did complete my segment.

After cycling home, I re-evaluated. PPI’s were not the solution. I’ve now stopped taking them entirely, and I have a burning sensation in my stomach all the time. I’m due to see my Gastroenterologist in 2 weeks time, and am now trying out a specific diet that should reduce my symptoms within that time. In all honesty I think all my current physical symptoms can be explained by the flush of antibiotics I was given for my kidney infection in October 2015. They likely killed off the flora in my gut, and as a chain reaction could account for the discomfort I currently experience.

I’m hopeful that my new diet will address my symptoms, and if not that the consultant I’m due to see will be able to help. Bear with me, I’ll be back to PB smashing, but my long-term health has to take the front seat for a while.

My story should show all of you of the combined power of FRR. Without the support of the FRR team, me and my family would have not made the recovery we have. I am eternally indebted to the team as a whole. Thank you.

Finally, there are several other FRR’s out there battling through their own emotional and physical troubles right now. It’s not easy. Running became my focus and meditation. I’m sure many of you resonate with that. But sometimes it comes down to practical differences that we can help make in each others lives to help restore our overall fitness and well-being. That’s what FRR did for my family. I’d like to think that I’m a positive force in that difference for other FRRs. If you think I can help you, I’m more than happy to give back to a club that has given me so much.

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4 Responses

  1. Well done JJ. Nicely written & perhaps some good memory buttons for you! I admire your spirit & determination. It’s so good to see you at practice & for the races you either run in or support! FRR is truly full of fabulous people! You are certainly one of them! X

  2. Christina says:

    Really interesting read JJ you’ve come such a long way. Might be worth considering having a read of this book, could be worth trying an auto-immune diet to get your gut back on track, though i’m sure it would actually benefit us all and once our guts have been damaged it takes considerable time and effort to restore our health.

    Dr Tamsin Lewis (sportiedoc) is a British doctor and ex pro triathlete who works extensively on improving various health issues including the gut, although i’m sure you’re not just relying on the NHS anyway :o)

    https://www.amazon.co.uk/Simple-Guide-Paleo-Autoimmune-Protocol/dp/1519600283/ref=sr_1_3?ie=UTF8&qid=1469526278&sr=8-3&keywords=paleo+autoimmune

    • JJ says:

      The diet I’m trying is very restrictive. No processed sugars, no acidic fruits, no spicy food, reduced-fat intake (so red meat, bacon, sausages etc are out)… I don’t drink alcohol or caffeine anyway, but those are off the menu, as too are white potatoes… the list goes on. In addition I’m taking pro-biotic supplements to help rebuild my gut. The expectation is that this will take about 2 weeks to have “some positive” effect, and if it does not, something else is wrong, and we need to investigate. We’ll see. I’m quietly optimistic, but right now I’m not seeing much improvement.
      I found your MAF Training (along with the diet) very interesting. Simon Wiggins has floated the idea of an author he knows coming to give us a talk on nutrition and diet for runners. So fingers crossed something happens on that soon.
      I’ll check out the book. Thanks for the recommendation.

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