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Electric mountain bike gets heart patient back on the trails. Part 1

Nick

In his own words, cycling enthusiast, Nick Culshaw, tells Pedelecs how his Haibike means he can continue with the one sport he had always loved; In part 1 he tells us about his diagnosis, surgery and how MTBing was a passion he wasn’t ready to let go of.

Up until the age of 16 I was extremely active and loved a whole host of sports. I sprinted at county level and only narrowly missed out on the England Schools Squad for 100 and 200m in my first year of competing. I had already discovered MTBing and if I wasn’t running I was riding pretty much from sunrise to sunset.

One unremarkable day whilst out riding I was having a bit of friendly competitive rivalry with a friend racing up onto the downs where I live on the Isle of Wight. When we hit the summit I quickly became aware my heart rate wasn’t dropping and in fact it was far higher than I had ever experienced before. I sat down for a few minutes to catch my breath thinking it might be a bit of heat stroke as it was a fiercely hot day. After a few minutes the rate dropped down and I decided it best to call it a day and rode home at a sedate pace with a banging headache. A few days later the same thing happened again, only this time it didn’t stop.

My parents took me to A&E and the rate was brought under control. I was then transferred to Southampton General Hospital where I stayed for a month undergoing various tests, both invasive and non invasive. To cut a long story short I was eventually diagnosed with Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC). This is a relatively rare degenerative heart condition where primarily the cardiac cells of the right ventricle break down and as the body tries to heal the damage they become replaced by fatty tissue and scarring. Although I was unlucky enough to have ARVC, I am also very lucky as many patients die during their first attack. The doctors told me that my sporting background had meant I have a very strong left ventricle which thankfully was able to take the strain of the prolonged tachycardias. This was all back in 1992 and at 16 it’s very depressing to be told that you shouldn’t do all the things you enjoy, running, riding etc at a competitive level. I had to give my running up there and then but managed to continue my riding but with the requirement to not push myself too hard. At 16 though I guess there is a fair bit of denial and I did push myself further than I really should.

Various medications and surgical interventions (all of which sadly made the condition worse) to control the disease occurred over the next seven years but I was still managing to ride but it was impossible to ignore that the disease was progressing and life was starting to become a struggle. The decision was made in 1999 that my right ventricle would need to be “disarticulated” , basically severing the nerve connections from the rest of my heart so that the right ventricle would no longer beat. The rest of my heart would just have to man up and take the extra load required. This of course was major surgery and an operation that took me a long time to recover from with many complications along the way. By now biking again was a pipe dream.

Over the next year or so I managed to recover and adjust and build myself back up to the point where I wanted to try the bike again. I was actively encouraged by the consultant who said the exercise would be beneficial. This required building myself up from ground zero and was a really hard slog with many false starts and set backs. However I finally got there and I could ride with my friends again and enjoy the trails. There were various set backs but basically the next 12 years were relatively good. That was until May 2012 when I developed a whole new heart problem, a permanent atrial flutter. The consultant said it would be a simple day procedure with a cardiac ablation and the flutter would be gone. That single day turned into 11 days, an ITU stay, a damaged AV node and the requirement for a pacemaker to be implanted and what’s more, the flutter was still there! I now knew the bikes had to go. I was very poorly and they were just sat in the shed gathering dust and depreciating. I reluctantly let them go but having had long chats with my very supportive wife, I knew it was the right decision. My biggest challenge was holding down my job so the bikes and my desire to ride had to fade into the background. For me a bitter pill to swallow at 36.

The atrial flutter was diagnosed as a secondary complication due to how much harder my heart was having to work since the right ventricle had been taken out of the equation. The consultant was adamant we should try again and this time the op would work. They learnt a lot from the unique way my heart works during the last failed attempt. I had no option other than to put my whole trust in him.

I’ve always felt the need to have a focus to get me through my condition, to help me stay positive. Thankfully my wife and kids bring so much to my life that my goals have become clearer and more realistic. Where the riding used to be my single focus, it’s now a “would like to” on my focus list. I was happy that the decision to sell my bikes was the right one as MTBing is simply too strenuous a sport for my condition. I did however start to wonder if someone, somewhere actually produced a capable “e”MTB.

More out of curiosity than anything, I battered away at Google to see what I could find. I was finding home build kits to strap to existing bikes, I was finding “MTB” look a like bikes which I could tell simply weren’t up to the task of what I would require them to do. I found hub drives, crank drives, read online reviews and started to see that there might be a slight emergence in the market for such a product…..then I found the Haibike website. Now!! This is where I got focused.

Their Xduro range appealed immediately. Here was a company that somehow had got inside my head and built exactly what I was looking for. My research had proved to me that I needed a crank drive system on a MTB for the best application of torque, ease of tyre access, central weight distribution etc. I had been very impressed by Bosch’s literature on their system so I was pleased to see it strapped onto the Xduro. The most striking thing though was the way they have engineered the frame to support the motor rotated up out of harms way. Bottom bracket clearance in MTBing is essential and any design with a conventional underneath mounting of the motor would leave it very vulnerable to rock strikes, hitting outcrops when descending, riding flights of steps etc. It also would be submerged in the often encountered large puddles found in the winter. All of this was too risky and I was not prepared to pay my money for a failure waiting to happen. But Haibike had got it! They realised this obvious flaw if they were to produce a truly capable MTB and engineered a solution. They have produced a bike around the Bosch system and stuck to all the golden MTB rules regards the requirements of the bike. This is simply not a “me too” bike where the system has been bolted onto any old frame so the company can say “yeah we have one of those in our range too”. Haibike had certainly got my attention and made me think, just maybe…..

I was booked in for another go at the operation at the end of February 2013. Whilst still researching the pedelecs, I stumbled upon the forum and took the time to read various posts about people’s experiences, likes, dislikes etc. I also noted online that Haibike were to be breaking into the UK in 2013 with a proper importer. All my research had me coming back to the Haibike as the most suitable product on the market for my requirements and just within my budget. I read on the forum that Martin at Crank Cycles was going to be stocking them once they were launched. This was great news as I wanted to see one up close, ride it and check build quality and see if the Bosch system could offer what I knew I would need it to.

Once Martin said he had the bikes in stock I called in at the shop whilst on the mainland (thank you to my ever suffering wife for her patience and understanding!). I had a chat to Martin, explained why I was looking at the possibility of a pedelec and if he felt it would be able to tick my boxes. He said he felt it would but the best way to know was to try one. So I did…..

Read Part 2 of Nick’s story here.