Jamie Barclay

I arrived at the John Radcliffe Hospital in Oxford on Tues 19th August. Since knowing I was due to have the operation, and that I would be out of action for a few months afterwards, I had wanted to get the most from the previous months. I had plenty of evenings and weekends rock climbing, running and cycling. Worked for a couple of weeks running mountain courses at Plas y Brenin - where Mo & I could get out climbing in the evenings and weekends too. In July I went to the Alps for a couple of weeks with my best mate - dodging thunderstorms and doing some climbing and mountaineering. I had made the most of the summer, and tried to ready myself psychologically for the op. I was nervous, I won't lie. I had never had an operation before let alone a very big one like this.  The surgeon Mr M had been very good at explaining the whole process with the options to me, and answered my questions honestly, but that was in May when it all still seemed a long way off. Now it was r...

Looking at all this stuff I am not sure why I am writing it.  I think it is an example of how a certain diagnosis and medical advice need not be a drain on your life. I have plenty of friends who have suffered far worse problems than me: life-threatening traumas, cancers, psychiatric illness. What unites them all, and I hope I include myself in this to some extent, is to refuse to allow a "condition" or problem be an excuse for holding yourself back. The people I most admire are those who get the most from life despite their set backs, not because they don't have any. Hopefully this blog is an illustration of a life well enjoyed, not sat worrying about a day that may never come. Any time I felt a little down after my operation, about how tired I felt or how frustrated I was at being unable to walk up stairs without getting short of breath, I remember a comment recently from a friend who is recovering from a near-fatal avalanche accident.  I asked how he was getting ...

Each year from my early twenties, I would visit for routine echocardiograms, MRIs and expect to be told when I would need surgery.  Each year the answer came back that my aortic root diameter was stable, had not really changed significantly, and so things could wait a while longer. Initially this was year by year, but after a while I got to know my cardiologist Dr B really well, and he could see a trend in stability for me. "It could be in 5 years it could be in 10 Jamie, at the moment we don't really know. You are already doing things most patients wouldn't be doing, your heart seems to be coping well, this is a balance between interrupting your lifestyle and ensuring your health. At the moment you are doing great." So after a while I just tried to forget about it and enjoyed life. A summary of life leading up to surgery includes working as a mountaineering instructor, kayak instructor and general outdoor educator throughout the UK and overseas. Personal climbi...

From 2001 I worked leading overseas expeditions to south America, freelancing as an outdoor instructor in the UK, and being a snowboard bum working in kitchens in Austria for a month. During this last job I developed a very nasty pneumonia which put me in hospital for a week on IV antibiotics. Whether this was related to the lung issues which had caused me to bleed previously I do not know. Around this time I also had stopped taking my aspirin. I naively and stupidly thought it was pretty irrelevant and I was so fed up with taking so many tablets each day, and by this stage having to remember to scale down the dose of various things such as steroids over the course of the year, that I didn't see the harm in dropping what I thought was a simple painkiller.  On two separate occasions I had Transient Ischaemic Attacks (mini-strokes) . The attacks are caused by a small thrombus or clot forming in the blood and getting stuck for a short time in an artery - one of the carotid arteri...

I left school in 1996, worked for a year while living at home - during which time I cycled to work daily (about an hour a day total) on my old clunky mountain bike.  I joined a Tae Kwon Do club and started to train with them twice a week. I had been hooked on rock climbing since I was 14, and carried on doing this at the local wall and weekends away with friends. I went inter railing with a good mate from school at the end of 1997, travelling to Eastern & Western Europe, and then started at Bangor University in Sept 1997. At Uni I discovered mountaineering. Snowdonia led to Scotland in winter, which led to trips to the French Alps.  I climbed up to 4000m during this time, at no point feeling any significant difference in my physical ability to that of my peers, in fact I seemed to acclimatise well to altitude pretty quickly. I started white water kayaking and mountain biking, and generally led a very active life. During my time at university, I suffered my first e...

Around the time the disease was first diagnosed, Dr J (my rheumatologist) referred me to a cardiologist, Dr. B, who ran a few investigations such as echocardiograms (ultrasound of the heart - similar to what pregnant women have to show the baby in the womb) and MRI scans. These showed that the disease had damaged various parts of my cardiovascular system - mainly the aorta and carotid arteries. The aorta is the major artery leaving the heart, which branches off to supply oxygenated blood to the rest of the body's organs.  It has a "root" which is the bit going upwards leaving the heart, and an "arch" where it curves back down towards the lower parts of the body. Within the aortic root is a valve called, originally, the aortic valve.  This acts as a one way valve to allow blood out of the heart (left ventricle) when it pumps, but prevents blood in the aorta flowing back into the left ventricle when it is relaxed, which would cause an increase in pressure wi...

After 4-6 months of Cyclophosphamide injections every month, and a pretty high starting dose of Prednisolone oral steroids, the blood markers showed treatment had a very big impact in bringing the disease under control. I seemed to tolerate the treatments well, and they didn't really interfere with my activity - I was cycling to work (about half an hour each way) and training in Tae Kwon Do, and rock climbing occasionally at weekends, so really I was trying to lead a normal life (for me!). I have no memories of ever feeling very wiped out by the treatment, maybe a bit tired a few days after but nothing too bad. I was then switched to taking daily  doses of oral cyclophosphamide and continuing oral steroids, then a range of heart medications were introduced ultimately ending up on 50mg Atenolol, 75mg Aspirin and 2.5mg Ramipril for many years. At first the novelty of taking these pills every day made me feel a bit special - just being different from the norm I suppose. Then I got...

I was started on intravenous injections of Cyclophosphamide - a pretty effective but quite nasty drug, used in cancer treatment in higher doses. In the doses I was receiving side effects were much less than in cancer patients - I felt a little rough the day after, but otherwise I seemed to respond ok. The main risk was of infertility. Cyclophosphamide is pretty indiscriminate, and though it will attack and stop inflammatory cells in the body, it can also damage other cells not intended to be targeted, such as the sperm producing cells in the testes. Before starting Cyclophosphamide therapy, my very kind and understanding doctor, Doctor J, could see the young 18 year old in front of him was not going to be very focused on the future and possibilities of children, and to his credit he patiently explained the seriousness of the risk of infertility and strongly advised me to arrange for sperm samples to be stored in an NHS fertility laboratory. I was pretty flippant in thinking there...

In 1995 people at my (boarding) school noticed I (aged 17) was looking very pale, tired and thin.  I was getting very fatigued but put it down to just working hard and doing lots of stuff outside of this. I also remember having incredible night sweats which would soak all my bedclothes through, combined with feverish chills & shivering at night. I would also get back pain during these episodes, often propping a pillow under my back to stretch what I assumed was a sore muscle.  Not knowing any better, I didn't think to mention it to anyone. I was sent off to the local GP who ran a blood test which came back to show I was anaemic - with a Haemoglobin level of 9g/dL (normal range for a man is approximately 13 - 18g/dL). I was rushed into the local hospital and put in an isolation ward while further tests were done. I was there for a week and no further information was discovered. I was discharged under the care of a haematologist (blood specialist). For a further y...

In 1997 I was diagnosed with Takayasu's Arteritis, a rare inflammation of the large arteries in the body: for me the aorta and carotid arteries. The result was that over time I developed aortic regurgitation (a heart murmur)  and carotid stenosis (narrowing of my carotid arteries leading to the brain). Despite this I have been able to pursue a career as a mountaineering instructor and outdoor educator for the past 14 years, and pursue my own mountaineering, climbing and kayaking adventures. I recently underwent open heart surgery, replacing my aortic root and valve. I have not been able to find much information on heart defects and their impact on activities for young, fit people such as myself, nor have I found a recovery regime for open heart surgery for young fit people. This blog is intended to provide information on my experiences of the disease, treatment and surgery, and how I am recovering. I hope this is of use to others who are or may be in a similar situation in th...