Living With Vasculitis

Neil's Story -

My name is Neil and I turned 46 while on life support. I have Vasculitis.

Some of you will know me and some of you may even know my story; for those who don’t, please read and let’s get the word out there.

I have deliberately described my early symptoms at length as this disease is known as the “5 Doctor” disease. It is a disease which is not always picked up or recognised in time and yet can be tested so easily if that initial idea and test is performed.

It all started when I was feeling a little groggy in September / October 2015. The odd spate of tiredness, sore throat, slight pains in my back, a cold that just wouldn’t shift. Jobs undone in the house, low motivation and generally feeling unwell.

By Christmas and New Year my energy levels had really dropped, I thought I was just unfit or worn out as the winter went on. In January enough was enough, I visited my GP complaining that I thought I may have a kidney infection or even perhaps a kidney stone. I had random temperatures, not all the time at first but when they were there, they were high. These GP visits went on for 2 months.

By now I was having the worst night sweats imaginable. The pain was getting worse but it was so difficult to explain, they were random pains and aches all over my body at different times of the day. All I knew was that I was not myself. I would be asleep by 6pm, and awake in the night groaning in pain as I struggled to roll over or having to change our bed for the 4th time in one night. I continued to visit the GP’s, now almost weekly. Results were not showing anything in particular. “Maybe it’s a virus attacking your muscles?” “It may be flu, take bed rest and let’s see” My partner started telling me that I was losing weight, I had lost my appetite and struggled with day to day tasks like getting dressed, putting my socks on, and even walking down the stairs without sitting down for a rest halfway. Could this really be flu? I spent that week in bed but instead of feeling better, I felt weaker and weaker.

By the end of the week, I couldn’t find the strength to eat, to sit up or talk and now vomiting blood. Laid out on the sofa, my partner took me to A&E. My temperature was touching 40. Little did I know, on the 26th February 2016 that was the beginning of my journey.

I was admitted that night and spent the next 10 days in Bedford Hospital having tests, a biopsy on my lungs and investigations. Having reached no conclusion and needing to wait for biopsy results I was discharged home but in no state to return to work. By now, I was losing weight, couldn’t find energy to get out of bed, sweats continued and I was in a lot of pain.

A week later I was readmitted into isolation in Bedford Hospital where I was then treated with suspected TB and possible Sarcoidosis. At this point I had a suspected stroke and on the 6th April a heart attack. Now doctors were becoming baffled. I was still an inpatient but they could not figure despite numerous biopsies and tests what was the cause of this deterioration. My feet had developed a deep purple rash.

Having breathing problems and an infection, on the 13th April I was taken to Bedford Intensive Care where I was induced into a coma and placed on life support. My lungs were failing, there were dangerously low levels of oxygen in my blood.

On the 14th April Bedford, Papworth and Leicester discussed my case. Leicester agreed to send their specialist Ecmo team and I was transferred on Ecmo to Leicester during the night. It was there and then Vasculitis was diagnosed.

I remained on life support and on Ecmo for 8 days. During this time was given Dialysis and Plasmapheresis, my kidneys were now failing, all of this unbeknown to me.

Thanks to the knowledge of the Leicester Ecmo and Intensive Care Team, my treatment for Vasculitis could begin. I was given Cyclophosphamide, a type of chemotherapy.

It took me a further 4 weeks to get to the stage where I was now responding to some treatments, able to stay off of ventilation and to work on being somewhat mobile. The Vasculitis, the Ecmo, the ventilation had left me in a state where I had to rebuild my muscles, to relearn how to sit, walk, feed myself and even hold a cup. It was a painful and emotional recovery but with determination on the 24th May, I returned home. I had lost some of my hearing, my sight had deteriorated and I need to gain the 4 stone I had lost.

Having received Cyclophosphamide, a concoction of steroids and antibiotics, painkillers and oral chemo I returned to work with Bovis Homes who had supported me and my family throughout and continue to do so.

That brings me to now. A relapse or should I say Plan B. The Vasculitis has appeared to be rearing again and under the Lister Hospital Team where my disease is understood as well as can be, I am receiving Rituximab with hope that this will attack the disease and keep it at bay. My case, my results and subsequent results are being offered to this much needed research.

As you can see, Vasculitis can do a lot of damage before it is discovered or diagnosed.

My ability to do tasks is harder than before; I get tired and still walk with a limp, I am still quite weak and in pain. However, I will be trekking up Snowdon with my team on my Birthday, my first anniversary of living with Vasculitis. Please help me help fund research and awareness through Vasculitis UK.

Thank you for reading my story.

Neil

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