Robyn Tainty - Patient

We are sad to announce that Robyn lost her fight against cystic fibrosis on 11 September 2007, whilst waiting for her transplant. Robyn campaigned for donation and transplantation and was the face of National Transplant Week 2007. Robyn’s speech at the House of Commons was both courageous and an inspiration to us all.

I was born with cystic fibrosis, a life threatening genetic condition that results in many complications. In mine, and the vast majority of cystic fibrosis sufferers’ cases, the lungs are the primary organs to be affected. Thick mucus results in repeat infection, lung damage, and eventually death.

I have been in and out of hospital with chest infections for as long as I can remember. When I had my first operation I was just a few days old, and my second was a few years later. Nebulisers, physiotherapy, weight gain supplements, and many tablets have been as much a part of my daily routine as brushing my teeth twice a day.

Despite this, I did well at school, and left home to go to university in Brighton at 18. Unfortunately my lungs decided at the same time that they had had enough, and I suffered a collapsed lung two weeks after the start of term. I ended up in the local hospital which didn’t really help matters, as they were not a specialist unit. I suffered a few more collapses before I changed to a different hospital, who managed to get me back on track.

I am only too aware of the huge shortage of donors

Unfortunately, a large amount of damage had already been done, and my lung function was reduced to around 20% of what it should have been for a person my size. Everything left me breathless, getting dressed, washing, walking – I used to get around with the help of my friends, who gave me lots of piggy-backs! But I managed to stay at uni, and somehow managed to get a 2:1.

As I was approaching the end of my course, I was referred to Harefield hospital for transplant assessment. As I was perfectly aware of the state that my health was in, I was quite happy about this. However, it was still a shock when the doctor told me that with lung function like mine, my next infection could kill me. I didn’t have any hesitation in saying ‘yes’ when I was offered a place on the active transplant list.

I thought I would need something to occupy my time whilst waiting, so I started a part-time Masters degree after I completed my undergraduate degree. 20 months later, I am coming to the end of my Masters degree, but I still haven’t heard from Harefield – not even a false alarm. My health has deteriorated further, and I am now on 24-hour oxygen which has had a big impact on my life, particularly as it has hampered my (much valued) independence (I need someone to carry my cylinders when I am out and about).

I applied to do a PhD a few weeks ago. It took a lot of soul searching, because if I don’t receive my new lungs soon, I might not be alive to even complete my Masters, let alone a PhD. I am only too aware of the huge shortage of donors. However, I am trying my very hardest to stay positive and enjoy what is left of my life to the best of my ability, however limited it may be.