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14th September 13

Nick’s story

Nick was born in a hospital in the South Wales Valley in 1968.  He attended a Welsh speaking school and was very proud of his welsh heritage.

After school Nick worked around the country in the construction industry – helping build the M25, Canary Wharf and the Docklands Light Railway amongst his day-to-day worklife.  It was whilst working on one of these projects that Nick first experienced a problem with his throat.  He didn’t take much notice of his ‘sore throat’ at first, thinking he had acquired it through over zealous singing at a Wales/England Rugby fixture back home.

Eventually after many tests and bouts of severe breathlessness he was diagnosed with Wegeners.

Nick was treated in the Royal National Throat Nose and Ear Hospital in Kings Cross, London, travelling there more and more as the years passed.  He underwent many procedures to laser and clear his trachea, along with many drug combinations to try and put, and keep, the Wegeners in remission.  He could tell when he had a relapse and would up his steroids accordingly before being seen in London to stabilise them.

A tracheostomy performed to give his windpipe more room and a chance to recover produced many eventful episodes (like when he ‘lost’ his ‘talking tube’ overboard on the Dover/Calais ferry!).  A stent didn’t prove to be any use either – especially when the stitches holding it in place broke!!!

Nick was really pleased to meet someone with Wegeners in the same place as himself recently, as everyone else he encountered seemed to have their Wegeners in different parts of the body to him.  He could talk and advise as well as sympathise and encourage this person, with whom he was glad to just share his experiences with in the knowledge that they could understand exactly what the other was going through.

Most recently Nick was undergoing infusions in Hammersmith Hospital and was due to go for a review after completing the final one in the batch of three.  When asked how he thought they were doing, he said “my breathing is easier, but the sticky stuff is getting really hard to get up”.  This proved to be true as Nick choked on the Wegeners whilst on his Nebuliser!!! Nick passed away at home on 11th July 2012 aged 43.

If anyone reading this would like to know more please get in touch and we can hopefully help by providing more indepth details about drugs/trials etc.

We’ll never forget you, Nick, and will love and miss you until we meet again x x x

 

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