Victoria Glen

Victoria was diagnosed with Cystic Fibrosis at 6 months old and although she had a happy and normal childhood, hospital visits still played a key role in her life.

Victoria’s mum was determined to keep her out of the hospital as much as possible, and trained to administer home IV antibiotics very early on in Victoria’s life. When Victoria was twelve she decided she wanted to learn to administer the IV antibiotics herself allowing her to gain a little bit of independence. During her time on IV antibiotics Victoria still attended school everyday and if for some reason she was admitted into the hospital she would work with the hospital teacher to complete all the work send in for her.

After High School Victoria went onto study Community Arts at Strathclyde University gaining herself a BA degree in Community Arts. After University Victoria took a year out to just work and have fun, she moved out of her parents home and out of Glasgow to share with her best friend. Unfortunately, Victoria’s health started to go downhill and her hospital admissions became more frequent. She briefly moved back home for a month or so and then to a flat closer to her parents with another of her University friends.

During this time Victoria’s health deteriorated further and transplant was mentioned to her for the first time, as was the introduction of overnight Oxygen. At first Victoria didn’t like the sound of transplant, thinking it wasn’t for her but after a frank and honest discussion with her best friend Jay, Victoria decided that she was going to choose to live and work to get herself on that list.

Firstly she had to show compliance with her medication (something she had been slacking with and was most likely the main cause of her rapid deterioration), this she found easy to master once she committed herself to it. Next she had to be at a healthy weight for the operation. Recent infections had meant her weight had dropped to 44kg so she went back onto overnight Nasal Gastric tube feeding to help increase her weight. It took her 6 months but slowly that weight went up, and her CF unit put her forward for transplant assessment at Freeman’s Hospital Newcastle. She went through the four day assessment at the end of July 2008, where the doctors told her she was there at exactly the right time and was a very good candidate for transplant. She went on the active waiting list in September 2008.

Victoria tried her hardest to stay as active as possible remaining at her work and socialising as much as she could. She took it upon herself to organise a Charity Cabaret night using dancers and singers from Confidance Musical Theatre School where she volunteered. The night was a major success and raised over £2,500 to buy large televisions with integrated freeview and DVD players for the Cystic Fibrosis ward in Gartnavel General Hospital where Victoria spent most of her time.

Victoria’s time on the list was not what you could call uneventful. She met her friend Gregg who soon became her biggest support system and rock throughout the long wait. Her first false alarm call was in the early hours of the morning just 3 hours after she had returned home from celebrating her birthday with friends on Halloween, the next was the day before New Years Eve and this was the closest Victoria would get to the operating theatre for over a year. Another 7 phone calls and 5 more trips down to Newcastle each time resulting in the lungs not being good or Victoria being backup. Finally after 1 year and 7 months on the list Victoria got the call that would change her life.

Since then Victoria has started taking evening classes and doing volunteer work within Community Arts to try and get her career back on track. She has also joined together with fellow advocates Jacqueline and Kirsty to create Team Glasgow who will be arranging events to raise money for charities close to their heart including LLTGL. Their first event was a Masquerade Ball in aid of LLTGL in which they raised over £12,000.

Victoria is an independent and feisty young woman, who loves living life to the full. She says "This may sound cheesy, but the best thing about transplant is being able to go out with no oxygen worries and actually dance the night away!! I used to sit and watch others dance and have fun while I sat and attempted to dance on my chair but now there's no stopping me and it feels amazing!"

Victoria knows she is one of the lucky ones: "I always thought that transplant was something that was going to happen to me quickly but after the numerous false alarm calls I had and the long wait I realised that if we had more people signed up or more people inform their families they would like to donate then the less time people like me would have to wait. I want to be part of LLTGL, I want to see those donor figures rise and the waiting times decrease. I would like to make a difference!"

 You can follow Victoria's blog at www.victoriaglen.co.uk

Please click here to contact Victoria.