On 18^th February this year we lost our Mum, quite
suddenly, to ANCA Vasculitis.  Last year in the Autumn Mum was struggling with sore legs, it got to the point where she couldn’t make it up the stairs at work without stopping and going from her sofa to the kitchen as near impossible.  After calls with her GP a scan.  At the scan Mum mentioned her concerns over Vasculitis as her sister, Linda, had suffered and passed away in 2016.  Mum was told it wasn’t a concern as it doesn’t run in families…

The scan didn’t appear to show anything physical and Mum was referred to a physio.  The Physio called Mum 2^nd December and after a couple of questions asked her to head straight to the hospital as he was concerned there was a problem with her kidneys.  Mum was admitted with severe acute renal failure (function was less than 10%) and put on ITU at West Suffolk Hospital.  WSH liaised with Addenbrookes and Mum was diagnosed with ANCA Vasculitis. On 10^th December Mum was moved to Addenbrookes to be under the care of the specialist team.  Due to Covid Mum was only allowed one visitor, this was very hard for all of us.

Whilst at Addenbrookes Mum was closely monitored, a biopsy was taken of her kidneys and the Doctors considered the best way forward.  Treatment got underway in the form of cyclophosphamide, a type of chemotherapy. Mum was also having dialysis as the kidneys were so badly damaged they couldn’t do their job.  The treatment was hard going and there were a few setbacks but Mum was discharged on 23^rd December.  It was the best Christmas
present to have Mum home and be able to spend the time together especially as another lockdown was then in place which meant no visiting at all. 

In January the kidney function improved a little – things were finally on the up!  Mum was having treatment regularly, and we were being very careful with her diet to ensure that it was renal friendly.  Despite the best efforts by the end of January the kidney function had fallen again and a change to the treatment was needed. Rituximab was now added in to see if things would improve.  Mum also managed to pick up a chest infection which was not the news we needed.  After a trip to WSH Mum was sent home as the Doctors felt she would be safer there than in hospital where Covid was still rife.

Friday, 5^th February Mum started her new treatment, she spent all day at Addenbrookes. Even with her chest infection and after several rounds of treatment Mum had managed to walk through the hospital to the appointment, her consultant was amazed!  It was a long day with the two different treatments and Mum got home around 9pm, absolutely shattered.

Saturday we were called to Mum at home as she’d had a fall and really wasn’t well.  We expected this after such strong treatment.  Mum was insistent that she was staying home.  We went over Sunday and she was much improved, what a relief! 

On Monday I was called to Mum again as she’d had a fall.  By the time I got there paramedics were on the scene, they decided Mum needed to be admitted and she was taken to West Suffolk.  That was the last time I saw my mum conscious.

Stephanie was able to visit Mum whilst at West Suffolk which was a relief for us.  Wednesday Mum was transferred to Addebrookes to be under her specialist team, although not ideal we took comfort knowing that Mum would be in the best possible hands.  Mum video called for a minute or two to say she was tired and would speak to us tomorrow.  Sadly, by Thursday morning Mum had deteriorated so much that she was transferred to the ITU ward and put on a ventilator.  We thought it would be a few days, Mum just needed time to rest and for her body to recover.  We phoned every day and kept a diary for Mum to read when she woke up so she would know what had gone on. 

Sadly, it wasn’t to be and late on Wednesday 17^th February we had a few calls with Addenbrookes, the last one to say we should go to the hospital now to say our goodbyes.  My brother Scott and Aunty Marlin are both in Scotland so our best option was a video call for them to say goodbye.  It had all gone so wrong, so quickly.  This wasn’t the outcome we expected at all.  We sat with Mum, told her how loved she is and gave her a kiss, something we used to do every time we saw her pre-Covid.  Just after 1am on 18^th February our hearts were shattered as Mum passed away.

Vasculitis is such a rare illness but has devastating consequences if not diagnosed early enough.  We have lost Mum, our Aunty Linda and a good friend’s Mum to Vasculitis and yet we know so little about it.  The symptoms make diagnosis very difficult and often sufferers will see several Doctors before they get a diagnosis.   

Mum often spoke of wing walking so I cannot think of a better way to raise monies than to get myself strapped to an aeroplane and take to the skies – I am sure Mum will be cheering me on! 10th July also happens to be our late brother, Mark's, birthday so we can celebrate him too. I hope that by raising some funds other families will not suffer the way that we have.