People waiting too long...

Hi Everyone,

This world is so full of technology these days that you dont necessarily have to have met someone in person to have a friendship/aquaintance with someone. With the Facebooks, my spaces and twitter pages I have met a lot of different people some are Brittle asthmatics like myself others have other respiratory diseases some very rare and others more common. I had been following the story of a 20 year old girl Jess who was in desparate need for a lung transplant to give her the chance at life that her CF had robbed her of over the years. She had been declining for several years and had been waiting for the transplant for four whole years. She was told near the beginning of her wait that she would probably only have 2 years of life left with her very diseased lungs, however Jess had such a strength and determination about her that she refused to give up fighting. She fought on against the CF and against the doctors predictions. Just before christmas she was very poorly and was taken into hospital she had had several calls from the transplant people but each one to this point had been a false alarm - which must have been totally devestating for her and her whole family - to be so near - but yet so far at the same time and to then know that someone else was getting the second chance that moments before you thought you were going to have. I cannot imagine what she went through each time she had a call and then found out the lungs were for someone else. Just before christmas it looked as though Jess was loosing her fight and everyone who knew her either through friends of friends or actually knew her in person was following her progress on a facebook page set up for her so that any news could be passed on quickly to her friends etc. We all waited and prayed that Jess would get better so that the next set of lungs would be hers. Finally on the 28th December she was still in hospital at the time rather poorly and she was told a new set of lungs were hers. She went through the transplant. It was always going to be a tough battle and it started off with a few ups and downs as expected, then things seemed to be improving and people still continued to pray but were starting to look to what this second chance would mean to such an inspirational young woman. Unfortunatly things then took a drastic turn and then out of the blue last week Jess died - i found out when one of my friends text me just after midnight on tuesday evening/wednesday morning. I was a little shell shocked - just couldnt believe that it was true. It was a really weird week last week as i thought about all Jess's close friends and family, those who she met and left a mark in their lives and those like myself who had never met her in person but had followed her story and prayed, laughed and cried with her over the last few years - she touched my life and gave me a totally different attitude towards life. Everyday should be appreciated every moment. Life is just so precious full of those little moments that may not seem like much at the time but could be so poignant later on. I firmly believe that people come into and out of your life for specific reasons. Some stay and some do not,whether it be that you both need each other or one has a specific lesson to learn from the other it doesnt really matter - but each person brings something unique to every friendship.

Jess was a real inspirational charecter she had such courage and dignity fighting each day with grit and determination. She just kept fighting and refused to give up, but ultimately the transplant came too late and she had waited too long. Four years of waiting is just too long. People shouldnt have to wait this long for transplants. So many people die whilst waiting on the transplant list - before they get their second chance. Are you on the organ donor register? If you needed a transplant would you want someone to give you a transplant? Most people would accept an organ if they needed one in order to stay alive but so many people either wont or never get round to signing the donor register or fail to discuss their wishes with their loved ones so that people dont want to let their mother/father/brother etc be a donor as they didnt know what he/she would have wanted.

These statistics need to change and they need to improve so that more people get their second chance and that more people sign the organ donor register. I would love to see an opt out system rather than an opt in system as its regularly used as an excuse that people just havent got round to signing the register etc etc. if you were really against donating you would then just have to opt out of the system - this would mean that there would be so many more organs to help people like Jess in the future. People also need to start discussing their wishes with their families so that those people who will get those decisions to make know what you want. Each person who donates organs can change up to 7 other lives through transplantation - how cool is that!!!

Please, please, please sign up on to the organ donor register today. If you have always been meaning to and just not got round to it before then now is your chance it will only take a few minutes. You could change someones life like Jess's.

Follow this link to sign the donor register today on this link: - https://www.organdonation.nhs.uk/ukt/RegistrationForm.do

Also dont forget to discuss your wishes with your friends and family as well so that they know your intentions and then hopefully people like Jess in the future wont have to wait so long for their second chance.

Rest in peace sweetheart - you have your wings now and can fly with all the other CF angels, Breathe easy now Jess. Xx

Lotsa lv Rattles Xxxx