Monday 24 June 2013

CF Week 2013: Emily's Blog

Emily, who has been waiting for a lung transplant since December 2012, describes life on the waiting list.

Hi I'm Emily and I'm the first of this year's CF Week case studies. You can watch my video online at I am supporting CF Week this year because the focus is on transplants. I have been waiting for my all-important call for over eight months now, I have had a false alarm and been very ill. I really want to raise awareness about the need for more lungs to be made available. Here's what waiting on the transplant list is like:

As most people with cystic fibrosis will tell you, you start off in your early years coping with all medications, or rather your parents do! You start taking the nebs and feeling like you really are beating cystic fibrosis, you get to your teens and start to think about your future, then suddenly, infection after infection slowly takes away your lung function. I had a terrible time last year and ended up in hospital for 10 weeks with a collapsed lung. I was put on the transplant list in December 2012, and my lung function is now at 25%. I am using oxygen 24/7 and a machine to give my lungs a rest called Bi-Pap. It’s exhausting.

To raise my chances of getting that all-important call I am signed up to receive reconditioned lungs through Ex-vivo Lung Perfusion, this is just one of the research projects funded by the Cystic Fibrosis Trust, with support from the Robert Luff Foundation. It is just one reason why donating money during CF Week or any other time of the year to the Cystic Fibrosis Trust is worth your while. If it means I and others waiting for lungs get their call it will be worth it.

My friend Tom Chalk is running a 250 mile ultra-marathon for the Trust to help fund vital research. Visit his fundraising page if you want to support him:

Don't forget to read more about the consultation being launched today, this is now open for people to respond to, you can find this here. Hope you enjoy the video and the Week.


1 comment:

  1. Hi, my name is Martha and I am currently writing a 5000 word essay on living with CF, I hope this isn't too forward of me but and I'm really interested in getting people doing just that to answer a couple of questions for me.
    I have a survey at: and it would be super great. All the questions are completely optional and confidential, and there is a full disclaimer on the first page of the survey before answering any questions.
    I would love for you to be able to help me, no worries if not!

    Thanks so much in advance! :)