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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 www.cysticfibrosis.org.uk/emily. 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: http://uk.virginmoneygiving.com/TomChalk.
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.
Emily
Registered Company No. 3880213
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.
ReplyDeleteI have a survey at: https://www.surveymonkey.com/s/FW2ZBFZ 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! :)