About Vasculitis UK
Jill Hughes - A Health Journey Goes Full Circle
It started with a cough - a "nasty cough" as someone commented - which lasted for eight months. It didn’t respond to over-the-counter medicines or the antibiotics or nasal/throat sprays prescribed by my GP. Chest x-rays, a CT scan and lung function tests were all normal.
As time went by appointments at respiratory medicine clinics resulted in no definite diagnosis. Various conditions were considered - TB, bronchiectasis, lupus, even malignancy.
Meanwhile I began to feel extremely ill and suffered the most excruciating headaches. I remember, but not fondly, many days spent laying on the sofa waiting for the painkillers to take effect. I lost two stones in weight - not a slow weight loss but a rapid and alarming loss.
Then a strange thing happened. Eating and chewing became difficult due to acute pain in the jaws. Had I known it (if I had that magic science hindsight) these were classical symptoms of temporal arteritis, aka giant cell arteritis. A couple of doctors did feel my temporal arteries, but apparently there was no hardness or enlargement, so that possibility was discounted.
Then another strange thing. Walking became painful because of cramp-like sensation in the calf muscles, and I couldn't walk more than about twenty yards without stopping. "What now?" Gradually the left leg became colder and colder and the foot turned an increasingly darker shade of blue. It got so painful that I couldn't put it to the ground let alone bear any weight on it. Observe me, if you can, hopping around, hanging onto furniture, afraid to venture outside!
In February 2010, six months after the troubles began, I was admitted to hospital with critical ischaemia (lack of blood supply) to the foot. There I underwent by-pass surgery - veins being taken from both arms to provide a supply of blood to the offending foot. This was a particularly interesting experience as I am a retired radiographer and had spent many years "on the other side", dealing with and caring for sick patients. An interesting observation from my small granddaughter "Grandma, why have you got those scars all down your arms?" Strangely enough she was not impressed by my brief explanation of the operation!
It was then that the vasculitis diagnosis was finally agree on, and a "kick-start" dose of 60mg Prednisolone was administered intravenously. What joy to be told within a couple of days that the very high inflammatory markers in the blood had plummeted to near-normal levels. "This is magic stuff!" It appeared I did have temporal arteritis after all; the consultant rheumatologist saying it was very unusual for it to go to the legs. I then "entertained" a succession of medical students who came to investigate "this interesting case".
Following three weeks in a nursing home, I was deemed strong enough to go home. I was living alone (thankfully in a bungalow) as my dear husband had died, after a short illness, just after my symptoms began. A definite connection there, I think, but some medics may not think it’s obvious.
The leg graft served me well for six months and I gradually got used to walking again - just short distances with a Zimmer frame. Then, more leg pain - the blood supply had coagulated. No more veins were available, so a second operation has given me a polythene tube to act as an artery. However, I developed cellulites which necessitated a lengthy course of intravenous antibiotics. My hospital stay was extended by six weeks. What upset me greatly was that one poor little cat spent a total of three months in the cattery.
Gradually decreasing doses of steroids have kept the vasculitis at bay, but I have had two blood clots and have added Warfarin (for life) to my medication regime. The last four years have been a learning curve, adapting to living alone and being disabled, having other people to do jobs for me - housework, gardening, window cleaning., shopping and driving me to hospital appointments.
Obvious physical disability evokes different reactions. "Can't that lady walk?" asked a little girl when seeing me on my disability scooter, or the waitress who ignored me in my chair and asked my two companions "table for two?"
Contemplating an outing or a job is like being an army general working out the logistics of preparing for a battle. I rather enjoy the challenge but not the reason for it. I have, however, experienced great kindness from friends, neighbours and complete strangers. I also have a very supportive family, although none of them live near. I am happy to say I have no cause for complaint about my health professionals.
More recently heart failure has been diagnosed (family genes are responsible). This condition affects the lungs - so it’s back to coughing again!