The Backstory - Takayasu's Arteritis

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 year I made regular check up trips to this doctor, who could not find anything else wrong with me. Advice was restricted to "try not to exert yourself" which I pretty much ignored, but seemed to be coping ok.

On leaving school in 1996 I moved back to my parents' house in Berkshire, where a new haematologist referred me to a rheumatologist Doctor J, (doctor specialising in inflammatory diseases, such as rheumatoid arthritis or lupus), stating "I don't know what is wrong either, but I think this man might."  Sure enough Doctor J diagnosed me as having Takayasu's arteritis, a rare condition in the UK, being more common in Asia particularly among Japanese women. In this condition the body's immune system starts to attack the body's own tissues - in this case damaging the aorta and carotid arteries.

He explained that my blood markers showing inflammation were very raised, and recommended a pretty heavy course of chemotherapy to get the disease under control.

The impact of this was worrying for my parents, who had probably spent a good part of the previous year worrying about what might have been wrong with me. I suppose for myself I had not really felt very "ill" so far, and so was probably quite positive rather than concerned. Essentially someone had told me they could fix what was wrong with my blood, so that was a good thing. Given it didn't really appear to impact on my daily life anyway, I wasn't that concerned overall. The main thing that annoyed me at the time was that I could not now go on a trip to South Africa which I had been planning for a few months - it was going to be my first solo trip somewhere exciting.

This probably gives you an indication to the sort of person I was (am) and what I was focused on at that time!

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