Having been ill for many months, in October 2009 I had a lung biopsy to determine what I was suffering from.  At the same time my sister – Sue – donated a kidney to a very good friend of hers and whilst she and I were recuperating we would phone each other regularly.  I was truly inspired by Sue – she had literally saved and transformed her friend’s life.  I started to think “what can I do, that will make a difference?”

In January 2010 I got the diagnosis I was dreading - two serious lung diseases.  Organising fibrosing pneumonia (no abbreviation) and idiopathic pleuroparenchymal fibroelastosis (IPPFE).  The long and short of this is that my lungs are fibrosing which means breathing is going to become more and more difficult and a lung transplant will be not only necessary – it will be my only option.  I have never smoked.

The amazing fact about the second disease is that it is so very rare that there are only a handful of people in the world to be diagnosed with this condition.  That certainly puts a different slant on it all as there obviously is very little known about it.

Time has become very special to me.  I want some good to come from these diseases that will take my life if I don't get the transplant. I want to encourage more people to become organ donors.  After speaking with some doctors about organ donation they told me that unfortunately many people fill in those little donor cards and then over the months and years they lose them.  The NHS is trying to encourage those who believe in organ donation to register online.  It was at that point that Save5 was formed in my mind.

I personally paid for 1,000 Save5 badges because my first goal was to get 1,000 extra people registering as organ donors knowing that we could make a difference to so many people.

What makes Save5 so special are the badges.  They are unique and stand out and I encourage everyone to wear them because then it is a visual reminder to others – if they so choose to – to register as an organ donor.

And how do I feel about having these 2 diseases now?  Well in truth if I didn't have them, Save5 would never have existed.  The fact that more people have registered as organ donors means that we can potentially save or transform many extra lives, so I've come to terms with having these illnesses – no matter what the outcome is for me. 

Once I had achieved my first goal - my next goal was to get 10,000 extra people to register as organ donors.  Just imagine the difference that we could make to so many people. On Wednesday 4th December 2013 we accomplished that too.  So what next?  Many people thought I would now quit - have a rest.  How could that ever happen?

I am still acutely aware that 3 people are still dying every day because they are one organ short of life and that just rips my heart apart.  I knew I couldn't stop what I had started and so Save5 continues.  It continues with the sole aim of trying to save more lives sometime in the future by increasing the number of registrations. So please register as a donor if you haven't already.  You could Save5 lives.

Thank you.

T. Sandeman-Charles