I am a Business Development Manager at Open College Network West Midlands; we are a national Awarding Organisation based in the West Midlands. Each year we support a nominated charity and this year I am so happy that we are supporting Action for Pulmonary Fibrosis.
I was a little overwhelmed to be honest, that, 15 years after losing my mum to Idiopathic Pulmonary Fibrosis (IPF), I had the opportunity to present to my lovely work colleagues, to tell them about the disease and about the charity we have all chosen to support. Who would have thought it?
My mum was called Sheila; she was just 58 when she died from IPF in 2001. She died just 8 months after being diagnosed.
She was fun to be with, and always had the ability to make me feel that any problem was halved just by chatting to her. Gosh, how I miss her. I was lucky in that I saw of lot of her, we did many lovely things. In later life, she adored being a Grandma to my two children, Dan and James. Oh, and generosity was her middle name.
She was fortunate enough to have private healthcare through her employer so when she became a little breathless and the several courses of antibiotics prescribed by her GP didn’t ‘clear it up’, she was referred to a specialist quickly.
The respiratory specialist actually diagnosed it there and then in the consulting room. But then considering that the CT scan and lung function tests that followed quickly after, confirmed her lung capacity at just 37%, looking back, I am not surprised at the quick diagnosis. Well that and her classic ‘clubbed fingers’.
‘Is it hereditary?’ was her first question. ‘Not that we know of’, was the reply.
Being reassured that the specialist had patients that live with the disease for 10 years or so, and the fact that she did not have lung cancer, we left, although a little stunned to have a disease that we had never heard of, slightly reassured.
Just two months later she was oxygen dependent 24/7 and could not get around without a wheelchair. In just three months, repeat tests showed her lung capacity had dropped to just 24%.
The next outpatient appointment was different:
‘Am I going to die’, she asked,
‘Yes’ was the reply.
We lost her just a few months later, after much suffering.
15 years ago, very few people had heard of the disease and there was no support available for the patient or their families.
Fast forward to the present day, and my goodness, how things have moved on……..
Social media, support groups, and of course Action for Pulmonary Fibrosis. Thank goodness!
But there is so much more to be done.
We are a committed, dedicated team of 25 staff and we look forward to arranging different fund raising activities over the next twelve months to support Action for Pulmonary Fibrosis.
We already have hand crafted greeting cards for sale in the office. One of my colleagues has kindly donated money following his birthday, and my partner and I are about to sign up for the Clough-Taylor People’s run in March. Of course, I will be inviting colleagues too.
At least 2 two of my colleagues are insanely going to enter ‘Tough Mudder’ in the Spring. They will certainly receive all of our support. Plans are very much in the making…….