Number 4....

Post number 3. (the biggest news so far) Don't forget to check back to read 1 &2 written earlier today.

Last Tuesday was a normal day, the next day would be my little nephews birthday but he had been ill so I was trying to decide whether I could chance visiting him. As I've said numerous times before, I have to be extremely careful about catching any viruses etc because A) they can make me incredibly ill because of my current state of health and B) because if I get a call for transplant and I am too unwell then the operation can't go ahead. I don't meet up with people who are ill but it's always harder when it's one of the children, especially on a special occasion like a birthday. I get so upset as I am essentially missing out on their childhoods and milestones. However I begrudgingly decided that it would be stupid to go over and invite trouble, so mum and dad went over to see him and drop in his presents while I stayed at home.

Around 8pm I was sitting watching tv when the phone rang, I ignored it as I tend not to answer the house phone as I get very breathy talking to people. It stopped. Immediately my mobile started to ring with an unknown number. I answered it and my heart stopped short, the familiar voice of my transplant co-ordinator rang out, I was having a call. At this point my mind was racing ahead of me, i was having a call, mum and dad weren't here, were they really phoning me? I managed to calm down enough to focus a bit and listen to what she was saying. My co-ordinator told me that they felt it was worth bringing me in as they had a potential donor for me. The donor was a non-heart beating donor which is slightly more unusual, basically the donor patient was injured in an ITU somewhere in the country attached to a life support system. Extensive tests had shown they would never recover and the family would be withdrawing life support later that night. At this point I started sobbing on the phone, to imagine that devastated, heart broken family having to make that choice and in the midst of all their grief to be amazing enough to want to give others a chance at life by saying yes to donation was more than I could take, (it still is, I am sobbing as I write this).
After a few more minutes we finished call and I phoned mum to get them home immediately. I then started to get ready to go, while in tears and ended up in a breathless mess on the bedroom floor. I did as much as I good but was so hot and breathy by this point that I just sat and waited for them to come home. It just seemed so unreal, I had given up much hope of a call and here one was. I had been tweeting and campaigning all day about Tor's Christmas wish and now I was getting my wish!!! It was even more spooky, my nephews birthday (the next day) was also the day I collapsed 4 years ago and where my journey to transplant essentially began. It was too ironic, too perfect. This could actually be the Christmas present I had waited nearly 4 years for.

45 minutes later we were all on our way up to Harefield my transplant hospital. As we drove my thoughts kept returning to that incredible family somewhere in the country and I prayed that they would have strength and peace through the ordeal to come. They were never far from any of our minds.

When we arrived at the hospital I did the routine bits and pieces, form filling, canula and bloods taken. Then we waited. My co-ordinator had changed by that time but she was also just as nice and just as helpful. She explained that because of the situation with my donor the routine may be fairly slow while we waited for news from the other hospital. It seemed less and less real, less and less as though this call was really happening. It had happened so suddenly with differences from other calls we had had. To me and mum it seemed very surreal this time.

Finally at around 1am my co-ordiantor came in. The donor lungs were too damaged to be used. Waht had appeared ok on preliminary examinations were discovered to be too badly damaged on closer examination. My tissue typing also showed me and the donor weren't a good tissue match. We came home and arrived back by 2.30am.

I was gutted obviously, not quite as badly hit as usual for some reason which I'm thankful for. Very tired and recovering now. I have no cause to complain however, that special family went through hell that night but still ahd the empathy and kindness to want to help others. Someone has presents and a place at a Christmas table that won't ever be filled again. I can't express my utter sadness, and admiration of those completely selfless people. I am in awe of them. I ask you to join me in saying a prayer for them this Christmas, they and the other 3 families who gave me the chance during these last few years will certainly be remembered by us this year.

I doubt I will get chance to post again before Christmas so I want to say a huge THANK YOU to everyone who sends me messages and reads my blog. You mean the world to me and I am so grateful for your support. Wishing you all a very happy Christmas and a healthy, happy 2011.



  1. Hi Tor
    I've been reading your blog for a while now but have never posted before.
    I just wanted to wish you a very merry Christmas, and I sincerely hope that you get your Christmas wish very soon :)
    Dawn xx

  2. What a thoughtful young lady you are, My husband died at Christmas and sadly he was unable to be a donor, But your comapssion to the familys of those have is wonderful, I hope you get your much needed transplant soon,


  3. Hello Tor, Your day must have been a roller coaster of emotions, ending in natural frustration, you're showing amazing strength of character, you can be so very proud of yourself, I hope you and your family have a wonderful christmas,and the best christmas present isn't too long in coming. I look forward to your next blog.
    God bless you darlin.
    Glenn xxxx

  4. Hunny you know that I totally adore you and think you have such great spirit despite the daily struggles. I am sad to hear that this was not match for you but I am pleased that advanced medicine enables docs to make good decisions. It is very sad for the donor families and it is important as you say that this is acknowldged. Hun I wish you the merriest of Christmas' and I will be tweeting away now I'm back in UK xxx

  5. A beautifully written tribute to all the families who make that decision to donate and give life to someone they may never meet. I echo all of the emotion you feel for them and will be eternally grateful that someone gave my son extra time with us.

    Your incredible strength is amazing as always Tor.

    Wishing you and your family all the very best for Christmas and praying that your wish is granted.

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  7. Tor
    I don't know what to say. This blog entry brought me to tears. You are such an amazing person. I have been following your blog since I saw your story on the BBC website. You have so much strength, I don't know how I would cope if I was in your position. Since I am too young, I cannot sign up to the donor register but will sign up when I can and am encouraging my family to do so too. You are beautiful and an inspiration to us all,
    God bless,
    Kirsty xx

  8. Merry Christmas Tor. Sorry I've not managed to comment on many of your recent blog posts, but I do read them all.

    Take care,
    Moll x x

  9. Hi Tor,

    I've been reading your blog since you had your article on the bbc news website and first of all wanted to say thanks for such a brilliant read!

    Secondly I wanted to congratulate you on all your amazing work regarding organ donation awareness, I work in a cardiothoracic operating theatre and have therefore have the opertunity to see patients have transplants and come out the other side. Because of this I'm also a massive supporter of people getting on the register... I've forwarded your website to everyone I know in the hope that it will urge even more of them to sign up.

    Thirdly I wanted to say how I admire how you dealt with this last call and how you saw the other side of things, all I can say is keep strong and I'm wishing for your Christmas wish to come true.

    Take care

    Alexandra x

  10. I just wanted to stop by and wish you well,
    I know you are struggling right now but don't get down!! Picture nice healthy lungs in your future!!

    you kick ass

  11. hi tor
    you don't know me but I am waiting for a transplant at harefield too. I have been waiting for 3 and half years and am now on the emergency list. I just wanted t say u r not alone i know what it is like to wait and struggle too I hope u get ur new lung very soon. I have also added u on facebook i hope thats ok. take care katy