My wife Sue started being ill on holiday in Ibiza 2015; she was only in her early fifties when she developed the first symptoms. Up until then she was a brilliant example of a very fit fifty something. She did everything the expert’s advice, eats well, watched her weight, didn’t drink alcohol and took loads of exercise. She was a very independent lady and loved going to Zumba with our daughters and doing charity runs. She could shop for England and she loves following our footie team and still manages this (which is a good story to tell about the difficulties of planning a trip to an away match and hotel with all the drugs and oxygen etc.)
Sue is an inspirational lady. We have been together since our teenage years and have three grown up children and a teenage grandson.
Within a few days she couldn’t pursue alot of her physical hobbies such as Zumba and over the next few months she got worse and started to lose her independance. She and all our family were devastated and following complications with a lung biopsy to diagnose PF during 2016 she spent over four months in hospital over numerous admissions and we nearly lost her.
She was initially a good candidate for a transplant following a three day inpatient assessment; however, she was turned down for transplant and is now receiving palliative care as we enter year four.
I’ve started to help raising awareness and when I finish work in the New Year I hope to assist the cause regularly. I trouble shoot for a living and have come to realise just what a terrible disease this is and how little awareness and funding there is. I have become of numerous issues including ignorance, in equalities and outright misunderstandings of the disease and also the difficulties of being registered disabled. I have spoken many times to the senior people at WWL NHS trust and their teams and have offered my assistance going forward.