Victoria (Tor) was diagnosed with Cystic Fibrosis (CF) when she was 2 years old and during her childhood she remained fairly well. By the time she reached her teenage years she had started to feel the effects of her CF, she found herself becoming increasingly more breathless.
Things came to a head in December 2006 when she collapsed and was rushed to hospital, placed on oxygen and given intravenous drugs to stabilise her. Her lung function had crashed to 23%. She returned home after two weeks but her lung function did not improve and she began using oxygen 24/7 and a wheelchair to get out and about.
Tor says “Every aspect of my life is affected by my need for new lungs, even the smallest tasks such as getting dressed leave me exhausted. Emotionally, I can’t begin to describe the effect my situation has on both me and my family. There are days where I just feel overwhelmed by my situation. It is as though my life is on hold. I never forget the fact that when my chance comes it is because someone else has lost their life. It's not something I take lightly in the slightest. The thought that my chance may never come is just heartbreaking. On the other hand being on the list gives me a huge sense of hope, a beacon of light, that things could get better, and that is the thing that pulls me through each day. “
In a recent blog entry, Tor speaks openly and frankly about the struggles of every day life with end-stage CF: "I have been struggling A LOT even for me. Everyday things are getting harder and harder each day with me needing more and more help from my mum. Things like getting washed/dry, eating and even walking the 20 steps to my bathroom have been just too much most days. I never wish to sound preachy so try to avoid typical "most people don't realise how lucky they are" statements but it has been very hard to watch people out enjoying the sunshine, walking down the street without a care in the world. I feel like I am in a different world. Stuck in my bedroom, curtains drawn fans blazing, lungs feeling swollen and irritated, unable to catch my breath and the air all around me feeling polluted. Whereas I used to go to bed and think "tomorrow might be a bit better" I realised lately that that idea hasn't come true in several months. It has been unbearable trying to come to terms with the fact that tomorrow isn't going to be better than the day before. Some people will think that sounds negative but it's simply the stage that I'm at with my illness now."
Victoria has had 7 false alarms in the time she has been waiting – this means that she has been called for transplant but on arrival has been told there is a problem, such as damage to the set of lungs, and the operation has not gone ahead. Tor needs this transplant soon in order to survive.
To follow Tor's journey please visit her blog here.
To help give Tor and others like her a chance, please consider signing the Organ donor Register.