Zoe’s journey with Vasculitis

Written by Zoe Hill on her journey with Vasculitis to support the campaign to diagnose earlier:

After a series of severe infections, emergency operations and hospital
admissions over a three month period, I was diagnosed with WG in 2006
(I was 34).  When finally diagnosed, a doctor threw a piece of paper at
me with the name of the condition on it and said you’re having chemo
tomorrow as he rushed off the ward.  I was petrified.  Did I have
cancer?  What is this Wegeners thing?

So, I started a course of cyclophosphamide the next day and the only
information I had on WG was what my husband found on the internet –
worryingly the doctors and nurses used to borrow this too!

Unfortunately the WG still ran amok, I feel the lack of knowledge and
specialism on the part of the diagnosing doctors resulted in a lot of
damage to my body here’s a list of the main points: total collapse of
my nose (saddle nose), lung damage and permanent collapse of lobes,
heart damage, narrowed windpipe leading to a permanent tracheostomy,
deafness caused by destruction of the inner ear – I rely on a bone
anchored hearing aid, osteoporotic fractures in my spine, ribs that
break if I cough too hard…..the list seems endless.  I have
adaptations in the home like a stairlift and bathing aids and I have
to be pushed in a wheelchair to get about outside.  I rely on a huge
regime of medication and hours spent nebulising each day just to keep
things on an even keel.

The best thing I did was pushing to get referred to Dr David Jayne and
the team at Addenbrookes in Cambridge that along with the ‘wonder’
drug Rituximab was a real turning point in the management of my WG.
Before that the WG ran wild nothing really helped it was constantly
flaring and ‘grumbling’ until I started having treatment at
Addenbrookes in 2009.

Since then my husband has been trained to give me IV drugs at home to
supplement my tablet meds.  Including high dose antibiotics via a
portacath and weekly immunoglobulin therapy via pump infusion
subcutaneously.

Because of WG, I have been close to death on many occasions one of the
worst was when my lungs collapsed while undergoing an operation.
Thanks to the skill of the docs and two weeks spent on intensive care
I pulled through.

I like to always know the facts of my condition and I asked one of my
consultants how he sees my prognosis and the way he put it was I could
get tickets for the Olympics but don’t rush to get some for the World
Cup.  I know it sounds a bit sick but I’m fine with him telling me
like that and now I know what target I have to beat!

My husband became my full time carer in 2006 and a major part of my
survival of WG and all it has thrown at me is down to his and our sons
love and support.  And of course the excellent care from Addenbrookes
is vital too hence why we decided to move over a hundred miles to
Cambridge.

I would recommend that anybody diagnosed with WG or any Vasculitis
condition gets as much knowledge as possible and empowers themselves.
If you are not totally satisfied with the care you are getting, push
to see a specialist like Dr Jayne – care from a vasculitis specialist
saves lives – I’m proof of that.

I don’t want to bang on but I want fellow sufferers to see that even
if things do get really bad there is always light at the end of the
tunnel.  Life for me isdifficult with WG but I won’t waste my tears on it any more I am so
grateful for the life I still have, even if it is hard at times.

Zoe x

 

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