‘I am forever grateful’

Victoria Tremlett was born with the genetic condition Cystic Fibrosis. After four years on the waiting list for a lung transplant, Tor explains why she’s campaigning for more people like you and me to become Organ Donors.

Can you explain the effect that Cystic Fibrosis has had on your life?

I was born with the genetic condition Cystic Fibrosis (a disease that clogs the lungs and other organs with mucus) which dictated a lot of my life but didn't make an impact until my late teens.

By then I was becoming more and more breathless, struggling to walk to college just down the road and going back and forth to my hospital to try and find something to support my lungs. By the time I got to 19 I was struggling badly.

I had taken my first part time job as there was no way I could physically go to Uni. A month or so into my job as a SEN teacher assistant I felt very ill. I was off work for a couple of weeks and was determined not to let them down.

As I made my way to the school my body was like I had lost all control. After stumbling the five minute walk I collapsed on the pavement outside the school. I was taken to hospital, placed on oxygen and given IV antibiotics. I was horrified, yet so weak I just wanted to sleep and let someone else take the responsibility; it was as though I had woken up in a different body. I could no longer control it, something had changed and I instinctively knew it wouldn't change back.

I wasn't ignorant when it came to my health and my illness and knew what the next logical step would be. I asked my team if I needed a lung transplant. They held out for a few months but eventually agreed that I did need one.

So what was the next step to getting a transplant?

I was assessed and on the waiting list within 6 months. However I had a very long wait due to the lack of donors. I waited four years for my call and by this time things were bleak. My lung function that had previously taken a battering was reduced to 19% - the size of a coke can.

My hospital couldn't make me comfortable, I used oxygen 24/7 and a wheelchair to leave the house. The most basic things like dressing, washing, brushing my hair, walking 10 steps to the bathroom were impossible for me and I relied completely on my wonderful mum.

I had also been placed under hospice care, although I didn't need them to tell me I couldn't carry on much longer. They told my mum in the September I wouldn't see Christmas. Then on October 10th 2011 I received that life changing call.

I received lungs in a 10 hour surgery and after a rocky recovery I am doing well.

What are the complications you have to cope with after a transplant?

There are many complications after transplant which still limit what I can do, but my life is changed immeasurably for the better thanks to a person I will never meet who saved my life. I am forever grateful!!

What has life been like since your transplant?

Since my transplant (and during my wait) I campaigned a lot to promote organ donation, on TV, radio, papers, magazines. A year after my transplant I walked a half marathon which no one thought I would complete, raising funds for my hospice and the hospital which cared for me.

I graduated last year with a 1st in Literature from the Open University (a degree I started from home while I waited for transplant and honestly never thought I'd live to graduate).

I have opened my own baking business and love to cook and eat now which was a huge issue when I felt so tired and sick. It’s amazing to think how my life has changed, it may not be perfect but I'm here and alive!

Read Tor’s blog here.