About Me

Wednesday, October 05, 2005

My Story...

I was diagnosed with Cystic Fibrosis (CF) when I was 2 years old. CF is one of the UK's most common life-threatening inherited diseases. The disease affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus making it hard to breathe and digest food. There was no history of CF in our family and my parents knew absolutely nothing about it. It must have been so difficult for them to be thrust into the scary world of hospital appointments, survival statistics, nebulisers, physiotherapy and the million other aspects that make up having a daughter with CF.

During my childhood I remained fairly well. I kept up with everyone else my age and didn’t have much time off of school except for my 8 weekly clinic appointments. My mum had got me into a good routine with all my treatments right from the beginning and explained how important it was to do everything to keep myself well.

But by the time I reached my teenage years I had started to feel the bodily effects of my CF. I would find myself becoming breathless quite often but being fiercely private I always managed to hide my symptoms from my peers.

I gained 10 GCSE’s and moved on to Sixth Form College but by now I was really starting to struggle. I would spend my free periods at home, get lifts to and from college whenever possible and arrived early to class so that I could catch my breath before my friends showed up. Climbing the stairs at college was a killer and despite only living 10 minutes away the walk home would regularly see me gasping for breath and having to make several stops on the way. I would be speechless by the time I got in and barely able to breathe.

Straight after college I gained a job as a teaching assistant at my old primary school. I had volunteered there whenever I could and everyone knew about my CF and were very supportive. I loved working with children and as my position was only part time I had plenty of time to rest. By now I was back and forth to the hospital a lot, desperately trying different things to improve my breathing but all with little success. I was breathless most of the time and found going out, working etc really draining. Dreams I had of going to uni or drama school were impossible as I knew there was no way I could manage the physical exersion.

Things came to a head on December 15th 2006. I was having a particularly bad time health wise and had been forced to take some time off work, it was my first day back and I was determined not to let them down.

As I started walking I knew things weren’t right. I collapsed en route; it was as though my lungs had completely shut down. I was driven to hospital, placed on oxygen and given intravenous drugs to stabilise my condition. It was a very scary time for me as I had never felt so weak, and out of control before. I felt like I was trapped in a body that wasn’t mine, my lung function had crashed to 23% where it has remained ever since. I returned home after two weeks but my lung function did not improve. I instinctively knew that life wouldn’t return to normal, I began using oxygen 24/7 and a wheelchair to go out and about. Enough was enough, I knew transplant was what I was heading towards and it was my only chance at a better life. I approached my team about it and asked to get the assessment process underway as soon as possible.

I was placed on the active transplant list on the 9th July 2007 and have now been waiting over three years. I had a false alarm back in March '08 but unfortunately the lungs weren’t good enough to use (all organs and recipients undergo a strigent examination to check for damage and ensure the transplant is worth going ahead with). Since then I have had two more calls but again the donor lungs weren't viable.

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. My lung function has dropped to 19% and life feels very fragile. 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.

To sign the organ donor register please click here
For more info on CF please click here

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  1. Just went on your blog as a result of article on BBC website. Been meaning to sign up to donor regisltry for years. Finally done it as result of your blog.

    Good job by you. Good luck.

  2. Hello Tor!

    What a great blog, really excellent! Like Claire, I too am an organ donor - I'd never really given much thought as to why or what benefit others may derive, but it's now crystal clear. You are doing a wonderful job in spreading the word to others. I wish you all the best!

    Thank you for such an inspirational read.

    Allen, Dundee

  3. I have signed the organ donor register and will read your tweets with much interest and hope. Wish you well. Keep smiling.

  4. Hi Tor. I wanted to leave a message after seeing your BBC news article. I think it's amazing of you to raise awareness of organ donation. I honestly don't know why more people aren't registered to donate. I registered when I was younger when I first found out what organ donation was. Even if I hadn't, if I'd died I know my mother would have wanted me to help save others.

    You're doing an amazing thing and I wish you the best of luck for the future.

  5. Came across your blog via the BBC News website. I don't know much about CF, but I hope reading your blog will help me and others gain a better insight. I've been on the donor register for 6 years, and I hope when my time comes, I'm able to help save and improve at least one life.

    Good luck to you, Tor. :)

  6. Dear Tor,

    thank you for helping to raise awareness of CF and organ donation.

    Even though I am not personally afftected by CF, I hear about it auite ofter due to my Mum's work where she diagnoses children with CF...

    I just want to wish you all the best - and I hope that you won't have to wait much longer to get a transplant, and that your health stays good!!!

    Your story has made me appreciate again what it means to be healthy - Thank you very much for that!!!

    Take care,

  7. Greetings from Belfast Tor!

    Like many others, I read your article on the BBC website, visited your blog and have now registered as an organ donor.

    You have changed a lot of lives for the better, mine included, so thank you for that!!

    I really hope I can see you live the dream and be on the big stage some day. Nothing is impossible!

    Best wishes,

    Rik B

  8. Hi Tor,

    Read your story on the BBC website then followed the links to your blog and was very touched by what you have written (good and bad days). I have posted everything onto facebook and urged everyone I know to join the register so if they do the same the word spreads very quickly and you never know who you are reaching in the end... possibly someone who could help you. I have been a registered donor for a long time and carry a card - I wish you well for the future and hope to see your name up in big lights on one of the beautiful theatre houses in London or beyond!! Lots of luck and keep up the good work. Claire Samani x

  9. Thomas Klauset Aurdal23 October 2010 at 16:03

    Hi, I read about you at BBC. I'm a heart transplant recipient myself and you can read my story here:


    However, I would like to tell you about an last option therapy I recommend to last stage patients on waiting list. If interested pleas mail me at: aurdalklausetthomas1986@gmail.com

  10. Hi Tor,

    I'm Dave, 27 w/cf - so can understand some of what you are going through. Thought getting the Beeb article published must have taken a lot of effort so well done. Keep fighting!


  11. Hi Tor I just read your story on the BBC NEWS website and was moved to say Hi and to wish you the very very best and to say that your account of your situation was impressive......I am signing up to the donor registery as a result of what I have read.....any of us could be in this position of requiring a transplant of any kind.......

  12. Hi Tor I just read your story on the BBC NEWS website and was moved to say Hi and to wish you the very very best and to say that your account of your situation was impressive......I am signing up to the donor registery as a result of what I have read.....any of us could be in this position of requiring a transplant of any kind.......

  13. Your posts bring much enlightenment to others. Thank you for being you. Remember it is ok to be emotional & throw tantrums so dont feel too guilty about it. We love & support you even though we do not know you. With all the blessings I can possibly give, love Cindy.

  14. Good luck with everything x

    Marsia from Lichfield

  15. Thomas Klauset Aurdal31 October 2010 at 03:02

    Tor, read this one:



  16. Hi I read the Sunday Times article
    I was very impressed with your courage I wish you the very best of good will for the future
    I very much trust that the operation becomes possible
    I admire you very much

  17. Hello, I just read "Relative Values" in the Sunday Times. You and your Mother are without doubt, modern day SuperPeople. Can only wish you the very best and may ALL your dreams come true.
    Dan, UK

  18. MARTIN, BIRMINGHAM23 November 2010 at 16:35

    Dear Tor,

    I have just read the article in the Sunday Times about you and your Mum. You have a lovely smile (as does your Mum). Your story is heartbreaking AND incredibly uplifting. I wish you all the luck in the world in getting a transplant. It seems mad to say you have been blessed to have such wonderful loving parents in the circumstances but I hope (on your good days) it is possible for you to see this.

    I don't say this to boast at all but I competed in the British Indoor Rowing Championships for the first time (aged 46) this weekend. The reason I mention it is because I am very very conscious that I have been blessed with good health and strength when others have not. I therefore want you to know that there are people out there like me who do not take their good health for granted precisely because they know there are others out there who have never been given it.

    I think there is very little I can teach you, you are so mature and even-handed (even when understandably admitting things get you down) but I thought you might like to know of a line by Philip Larkin in a poem called "An Arundel Tomb" about death and love. He is talking about the stone effigies of a husband and wife he has come across and the last verse goes:

    "Time has transfigured them into
    Untruth. The stone fidelity
    They hardly meant has come to be
    Their final blazon, and to prove
    Our almost-instinct almost true:
    What will survive of us is love"

    I hope this gives you some comfort, Tor.

    I wish you all the best


  19. Hi Tor,

    I read your interview in The Sunday Times and I just wanted to say you are an inspiration!

    All the best,


  20. Wow what an incredible mother you have and what a wonderful relationship you share with each other - she must be so proud of you - you are clearly an extremely brave and clever young lady. Very much hope that next year is your year and you get some good news. It takes such strength to carry on your fight and you are greatly admired.

    Keep on carrying on XXXXXXX Clare

  21. Hi Tor,

    I saw the article on you and your mum in the Times supplement and ripped out your blog link and have only just got around to coming by to leave a message!

    My aunt hazel died of CF when she was in her 20s about 18 years ago and your story made me think of her and my grandma and made me cry. You're both such an inspiration and I hope with today's more advanced medicine you will get the chance Hazel never had.

    God bless,

    Lindsey x

  22. Dear Tor,

    My father gave me an article he's been saving about you from the Sunday Times.

    Like others who have read about you I will now become an organ donor and try and get others to as well.

    Thank you, I will be following your blog, Good Luck,

    Kira xx (Nantes, France)

  23. Love your blog Tor. Thanks so much for sharing. It means a HUGE amount to more people than you imagine.

    With love, and fingers crossed for you, Lizzy (Mum to Isaac, who is 6 with CF) x x x

  24. Hello Tor,

    I saw your video via Twitter. I am really sorry and I wish you all the best.

    Take care,
    Sastha Prakash, India.

  25. Wow!! What a life story!!

    I just found your story at twitter... and I want you to know I'm gonna pray for you!!!

    Blessings from Brazil,

  26. Hi

    I found a link to your blog a long while back so I apologise for not visiting sooner - clearly, I'm missing out! You are such an inspiration and given me a better understanding of what CF is about. I can tell that you are grateful and appreciative of all the good things that life has to offer and I wish you all the very best in the future. I look forward to reading about what you get up to!

    Lucy Milne