CF Week 2013: Philippa's Blog

Philippa, who was one of the first people to receive a transplant in the EVLP pilot, talks about the new lease of life her transplant has given her.



The Ex-vivo Lung Perfusion (EVLP) technique uses a modified dialysis machine to turn lungs that were previously deemed unfit for transplant into suitable donor organs.

For about a year or two before my transplant I was very poorly, I didn’t really have a life; I was just existing. I hardly went out anywhere as it was such a huge effort to get ready, and by the time I got dressed I was exhausted. I didn’t want to catch any new infections either. My lungs were functioning at just 17% and I would watch my friends and family live their lives from the side lines. 

I was on oxygen 24 hours a day, taking a massive cocktail of drugs, including continuous intravenous antibiotics and a range of nebulisers. I had to use a wheelchair if I did go out anywhere as I couldn't walk very far and I used a ventilator overnight to give me a rest from breathing. I couldn't do anything for myself such as having a bath or getting dressed as I just didn't have the energy or the breath. I was very weak. I also had to drop out of university as I was too ill to finish the course. That was a huge blow for me.

But now, I have an incredible new lease of life. Since my transplant I have been on holiday a few times, got myself a full time job, found love, moved into my own home and now I am planning my wedding, which is next year. My lung function is 126%, which I still can't believe! Two years ago when I was so ill, I never once imagined that life would be this fantastic after transplant. I still have to pinch myself to make sure this is not a dream.

I strongly support CF week because I want to help raise awareness of cystic fibrosis, but I also want to raise awareness of transplantation. A double lung transplant is very much the last resort, when your own damaged lungs are failing. Yes it is a massively scary time, one in three people with CF waiting on the transplant list don’t make it as there is a huge shortage of donor lungs. The wait itself is exceptionally difficult, but it was the only way forward for me.

Put simply, I wanted to live – so I had to do this. Because there is such a shortage of donor lungs that are suitable for transplant, doctors have recently been pioneering a new treatment where previously unsuitable lungs are treated to make them usable – this is the type of transplant I had, it is known as EX-VIVO, and was funded by the CF Trust. And I can honestly say my lungs are amazing, my life now is wonderful and I have no regrets whatsoever.

Watch Philippa's video about her experiences.