Waiting For My New Beginning…

I feel my life is over; my body is struggling with daily life challenges and I’m on full time oxygen and mechanical ventilation to sleep.  This illness is now taking over my life.  It has become my life; I’ve started to exist, rather than live. I have help all day and night to get through; it’s very difficult for me to allow this, but I have no choice.  Cystic Fibrosis is stripping away who I am; it’s taking away my independence.

I’ve always been compliant with medications, but continued to fight back.  When I was 14 I was dying and my family were called in, but I recovered.  When I was 21, I was given two years to live and was too unwell for a transplant.  I was extremely thin and had given up – but I still had a resilience and determination to beat CF and fight back.

In 2014 things started to change dramatically.  I noticed I was more short of breath and my heartbeat was always very fast.  I felt very tired all the time and struggled to do things during the day.  Tests were carried out and I was told my heart beat was Hypoxia, meaning that it was under pressure.  That was a huge blow and life then became much more of a worry for me.  How could I bounce back from lung failure?  This was the start of a big slide in my health that I would not recover from.

Today I feel life for me is very limited.  I miss me …  Where did I go?  I feel like a spider that’s shed its skin …  I’ve shed Kim along the way.  CF has taken my personality, my looks and my whole body; it’s taken my smile and my happy self and it’s filled me with stress, worry and uncertainty.  I’ve had constant chest infections that chip away at my lung capacity, weight loss, extreme fatigue, depression, anxiety.  I’ve arranged my funeral and picked my songs; this is what Cystic Fibrosis forces you to do.  I’ve arranged to donate my body to medical school.  I don’t want my struggle to become my identity – but it is; CF has taken away my identity.

I didn’t want Cystic Fibrosis to define me.  I’m Kim – who’s chronically ill with end stage lung failure and limited time to live.  But there’s hope for me, a life out there waiting for me, a life I’ve never known …  I will be able to walk and talk at the same time, I will be able to go places without carrying an oxygen supply, I will be able to blow out candles on my cake, walk my dog, meet my friends and wash my hair without tubes – because my life will have no cough, no infection and no limitations.  I will have normal healthy lungs and I’ll be able to breathe without tubes and machines.  

Organ donation is my only hope.  This must not be the end; I look forward to my new beginning – a new life, a new start and a new me