National transplant week and another CF star in the sky

This week marks national transplant week. The aim during this 1 week every year is to get people talking and thinking about organ donation. The UK is way behind other countries in how many transplants go ahead and something needs to be done to change this. The reality is that 1 in 3 CF people waiting for a lung transplant will die as their are not enough going ahead. This is a scary statistic when one day that will be what I need to survive. 

My little sister, my best friend, is on that list at the moment. (I will blog about this a little later.) So right now my focus is on her keeping well enough and getting that call and a new chance at life. I want those statistics to change not only for her and me but for everyone, their families and friends waiting for a transplant to save their lives. 

Heres the link to transplant week:

 http://www.transplantweek.co.uk/

Today my sister and I were invited to Papworth hospital. This is the hospital where she will get her transplant. They were having a transplant charity event to raise awareness and discuss ways to help many aspects of transplant and the care at the hospital. It was very informative and there lots of exciting things happening behind the scenes which will hopefully improve the currents rates. It was a chance to catch up with many of the transplant team as well as talk to others pre and post transplant. 

(Relaxing after the presentations with a glass of champers and a live band. Of which 2 members are post lung transplant patients. Amazing how donation can transform lives)

There was sad news from the CF community this week where a young girl lost her battle with CF waiting for a transplant. Emma was only 20. I did not know her personally but knew who she was as she went to the same hospital as me. Although we never crossed paths personally I know how well loved she was and what an amazing bright person she was. Her story has affected me, as having CF and knowing lots of others with CF you always find out the good and the bad news through blogs, facebook, twitter etc, so I follow many others with CF although I do not know them personally. It can be an inspiring thing but other times its sad when you see people who have lost the fight waiting for that chance. That's why we need to talk about transplant and get more people to join the donor register. 

The one thing I would say to anyone who says 'yes I want to be a donor I am going to sign up' is don't stop there.  For me the most important thing is to tell your relatives/next of kin your wishes. As if something happened to you the final decision is down to your family and if they do not know you wanted to be a donor they may not allow that to happen. They are grieving  its a horrible time in their life so to make that decision when they are unaware its what you want is very hard. If they know thats what you want it makes it easier for them and more likely for that to go ahead.  TALK TALK TALK about it, We need to spread the word!