Ashley's Next Breath
Shortly after my last update (see below) Ashley’s health took a turn for the worse. I was visiting my parents one weekend in mid-October when I received a message from Alastair, Ashley’s husband, saying that her oxygen and carbon dioxide levels had deteriorated and things weren’t looking good. I headed straight to the hospital and when I arrived the doctors were making the decision to start Ashley on ECMO – a machine which would do the job of her lungs. ECMO was initiated with the hope of keeping Ashley alive long enough for donor lungs to become available – which thankfully they did.
During the time Ashley was on ITU at Harefield hospital we continued to work on her campaign to raise awareness for the shortage of organ donors. We started a FB page ‘Ashley’s Next Breath’ and Twitter @sayidonate using the hashtag #HopeForMoore – more organ donors, more lives saved, more breaths taken. Ashley’s campaign was never about finding a donor for her, it was to raise awareness that 1 in 3 people with CF die waiting for transplant due to a shortage of donors; we asked people to sign the organ donor register and to let their loved ones know of their wishes to donate. The support for Ashley’s campaign has been incredible with backing from the Cystic Fibrosis Trust, NHS Blood and Transplant and MANY celebrities. I was interviewed on both TV and radio, and Ashley’s story has appeared in a numerous publications both in the UK and America, online and in print. Ashley’s recovery has been slow and tough, but amazingly she made it home to celebrate Christmas her family and she is now doing well. Ashley is currently re-adjusting to life, but when the time is right we will push forward on a new phase of the campaign.
Obviously supporting Ashley in her recovery and with her campaign has taken some of my time and attention, but additionally I have continued to participate in the CF Trust Activity Unlimited working group, the CF/Physio guidelines are now in draft, two projects have now been designed with Pactster using their social fitness platform to improve motivation and adherence to exercise for people with CF, and the presentation on Yoga and CF in Scotland was well received. I’m excited to progress with these projects, and I have also been asked to develop a specific yoga training course aimed at physiotherapists working with people with respiratory conditions – watch this space!