In September 2022 I cycled the length of France, from Roscoff on the North Brittany coast, to Hendaye on the border with Spain. But by January 2023 I couldn’t cycle more than 2 miles! When I was training for my 2022 French ride, I had noticed some extreme fatigue and light-headedness on occasion, but had put it down to the lack of carbohydrates in my system. So I was careful to eat as much patisserie as possible in France and experienced zero problems! But then, the route along the coastline was almost entirely flat….!
In November 2022 I started experiencing some massive nosebleeds, constantly bleeding gums and, in early 2023, clotted blood in my urine, as well as the crippling fatigue when doing anything strenuous. I had nearly 4 months of blood tests as my doctor tried to work out what was going on, together with 2 visits to urology and 2 visits to my dentist. The blood ladies at my doctor’s surgery began to know me as ‘the guy with the thick blood’ and some of my blood samples were returned as ‘clotted’. But nobody ever considered the significance of my hyper-viscous blood or tested it for the crucial immunoglobulin levels. Towards the end of April, having noticed my glasses weren’t doing as much as they could, I was in Tesco and called into the Vision Express outlet for a routine eye test, which was overdue. When he saw my retinal photography result, the optician turned quite pale and said ‘You have to go to the eye department at Salisbury Hospital immediately’.
The eye department had a good look at me and said that what they were seeing would normally result from high blood pressure, but my blood pressure level was not sufficient to explain it. They then referred me to the Acute Medical Unit who tried for 24 hours to get a blood sample which didn’t clot on the way to the lab. But, again, the significance of this didn’t seem to be recognised. Eventually, (phew!) I was seen by a consultant haematologist who immediately requested an emergency transfer to Southampton General for an urgent plasmapheresis because, by then, I was at extreme risk of a heart-attack, a stroke or going blind. He also requested a bone marrow biopsy to confirm what he suspected- WM!
The plasmapheresis stopped the bleeding instantaneously and, after a brief delay over the Coronation bank holidays, I was transferred back to Salisbury to commence 6 months of chemo- and immuno-therapy (B & R to those who know). The results of this were successful, but the combination of the illness and the treatment has left me with a compromised immune system which I’m hoping can start to be treated in the autumn with intravenous immunoglobulin (IVIG) therapy. Meanwhile, I’m lucky to have loads of energy and am really looking forward to giving something back to the incredible WM community by taking part in the sponsored London to Paris cycle challenge.
Because of my experience, and the rarity of the condition, which means the significance of the symptoms can easily be mis-interpreted or overlooked, I’m passionate about raising awareness of WM symptoms, and its potentially dire consequences, if undiagnosed. Particularly amongst frontline medical professionals like GPs, AMU units, dental surgeons and even specialist hospital departments like urology. So I’m really hoping the funds raised can help WMUK with this very important work.
I’d like to express my extreme gratitude to Dr Alistair Smith, my consultant in Salisbury; David in the plasmapheresis unit in Southampton; and the perceptive optician at Vision Express, without all of whom it’s possible I wouldn’t be here. I’d also like to thank all the nursing staff in both hospitals and, of course, my wife who has lived through this for the last 18 months plus and been amazing in more ways than anyone could imagine!