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.

xxx

On to my 2nd post to keep you all updated with lots of news. As many of you know I am an ambassador for the transplant awareness charity Live life then give life. This year we are working together on a very special campagin, Tor's Christmas Wish. I could ramble on for a long time about this but I think it's better if I let the wish speak for itself. You can also view it here
"My name is Tor and I'm 23 years old, however unlike most 23 year olds I am waiting for a double lung transplant to save my life. When I was put on the transplant waiting list I was told I had 18months to live, I have now been waiting 3 and 1/2 years, and it doesn't take much to see I am living on borrowed time.

I use oxygen 24/7 to support my failing lungs, a wheelchair to leave the house, the majority of my day is dedicated to medical treatment just to try and keep me stable. The smallest tasks like getting dressed, combing my hair and brushing my teeth leave me absolutely exhausted and my mum has to help me with everything.

My Christmas wish would ultimately be to get the transplant I so desperately need, but due to the shortage of donors, this may not happen. Without a transplant this could be my last Christmas, and so this December, I want to get at least 5000 people to sign the organ donor register, in the hope of saving lives.

50% of people waiting for lungs will die purely because not enough people have signed up to donate after their death. Each of us has the power to change this statistic. I don't know if my call will come but by signing up you will create chances for so many people facing a death sentence.

Please help me achieve my Christmas wish and give me hope, a future and the chance to see next Christmas.

Thank you."

I have been inundated with support for my wish and it has really amazed me how kind and willing to help everyone has been. Some highlights include a lovely guy called Niall Murphy setting up this facebook page and donating some advertising space to raise the profile even further - thank you Niall!

We have also had some high profile celebs tweeting about the cause such as Philip Schofield, Sarah Brown, Chris Evans, Peter Jones and Duncan Banntyne ( from dragons den). As well as literally hundreds of tweets from people on twitter spreading the word far and wide.
Blog readers, NOW WE NEED YOUR HELP!

First and foremost: sign up to the organ donor register here http://tinyurl.com/torsxmaswish

Secondly: join our Facebook page as shown above.

Thirdly: Spread the word!!! We need this message to be spread far and wide to get those names on that register. You can link to my blog, the wish page
Write a facebook status, write a blog post,email all your contacts, tweet your followers and use our hashtag #torsxmaswish, or ask a celebrity to tweet the message. An example tweet could be "Please RT @Tor87 has made a Christmas wish. You can make it come true - read how: http://tinyurl.com/torswish #torsxmaswish"

Doing this WILL save lives. In fact I have actual proof that the message is getting through to people........

I've had an eventful few weeks so think I'm going to do a few separate posts to fit it all in properly.
Last time I posted I was struggling quite badly. The day after I had a nice, spur of the moment outing, we managed to get tickets to the Taste of Christmas fair at the Excel center which is basically an exhibition of Christmassy things (mainly food). it was touch and go if I wouls be feeling up to going but we decided to go and stay for as long as I could manage. It was quite crowded when we got there and I wasn't enjoying it as being in the wheelchair with crowds of people pressing in on you is quite intimidating. Soon though, it started to thin out and it was really lovely to walk round. There was loads of smaples (had quite a few alchol tasters!) and a generally festive atmosphere, the attendants were really helpful and friendly and one stall holder came up and told me I was beautiful! Doesn't get better than that ;) We bought a few bits and pieces including some delicious mulled cider which I can't wait to have on Christmas eve. I expended a lot of energy and suffered for it later but it was worth it to do something different and have a treat.

Things have remained quite hard to cope with as mentioned in my last post. Sleeping has become a huge problem. In the last few weeks I've had about 2 proper nights sleep, and my body has not been coping well. One night I literally stayed awake from 11.30pm till 6.30am, consquently I had to stay in bed all day because I couldn't even get round the house as I was so weak. Every other night I have laid awake until 3-4am which again, over time makes it very hard to get through each day in my current state of health. I can't believe how hard it's hit me. My hospital gave me some sedating anti histimines a few weeks ago but they didnt help at all, then I was given mild sleeping tablets which gave me a terrible headache without helping my sleep so I stopped those. They have to be very careful what they give me as my lung function can go too low if I am very sedated. At this point I was literally at my wits end and felt pretty horrific. I brought up the idea of palliative care with my CF team and they have now referred me to my local hospice for extra care.
Now, obviously recieving help from a hospice has certain connotations. From my point of view I don't care who gives me the help so long as I am getting what I need to keep me as comfortable and as happy as possible. My pain and insomnia are ongoing problems that seriously effect day-to-day life. My mum and family on the other hand were quite scared at the thought of me going to a hospice because of the surrounding assumptions that you go there when you are at the end of your life and nothing more can be done. We heard from the hospice very quickly which was reassuring (things usually take a while to put in place) and they were very friendly. Mum spoke to them for a while and feels a lot happier about their involvement now. I'm happy that she's happy.

For me the hospice is a bit of a no brainer. My cf team specialise in CF,specifically lung problems. However Cf is so much more complex than that, it has so many other offshoot problems and when you get to the advanced stages like I have you get other problems such as pain etc which are exacerbated by lack of mobility. For a hospice it's these secondary symptoms that are their specialist field and they will be better placed to advise me with these aspects. It's obvious to me that without a transplant I inevitably will die, those are the facts that we all know. Going to a hospice doesn't mean they have given up on getting me a transplant, simply that things have cropped up since I went on the list that can be relieved a bit by hospice staff expertise. Also having a local team will be very handy. They can liase between myself and my CF care team as I understand it too. I think it's a positive move and gives us some much needed support.

I have already met the complimentary therapy team and the lady who came home to me was lovely. She gave me an aromatherapy massage which was very relaxing (the hope is with regular massages the tension will ease slightly in my back muscles) and a reiki session which I am less sure about but still quite relaxing. My next seesion is after Christmas and I will hopefully be meeting the triage nurse team at some point soon too. They are the people who will help with pain, insomnia etc medication and are always around to speak to so again I am hopeful that things might not get so out of proportion in the future.

xxx

I'll start off on a positive note, the response of you lovely people to my article in the Guardian. It is so fantastic to read all of your inspiring comments, they have kept me going over the last couple of weeks. I really hope the article has made some people think and sign up to the donor register. I must thank the wonderful Caroline who wrote the piece and was fantastically caring from start to finish, she also lent me her PDF so you can view it online here and in the awareness section.
Since I last posted I haven't been feeling great nothing major just the little things that wear you down, from continuing to pain, to sicky, nauseaous days, to sleepless nights, bloating, body draining exhaustion and all the little things that add up to make things a little bit worse. My hospital visit was ok, breathing slightly worse although not worryingly so, I was given another prescription for pain relief and discussed palliative care massage which might help with pain too. I have had terrible nights with little sleep lately and although I was given sedatives they didnt help much. I am now back into a slightly better sleep pattern but been told there isn't anything else I can have for sleeping, which isn't incredibly helpful. When your not sleeping till 4am then getting through each day on very little lung function its very draining and not good to my overall health.
Anyway none of this has made me particularly cheery, and I've been having a few hard times during the last couple of weeks. I dread these times as its so difficult to drag yourself out of them. To cut a long story short today I have reached a low point. It's devastating to face the end of another year. As many of my friends battling serious health conditions will tell you, Christmas is a milestone and when you are very ill sometimes milestones aren't so good. I loved (and still do) Christmas always have done, but it makes me desperately sad not to be involved as much as I want. Believe me I am the queen of "things will be better next year", and adjusting tasks to accomodate my health but this is my 4th year not being able to be properly involved and I can't brave face it at the moment. Yesterday I managed to put 3 baubles on my tree before getting breathless and giddy. It makes me intensely angry and upset to hear promises that next year I can do the whole tree myself and everything else I long for, I have said the same thing for the past 4 years, maybe things will never be better than this. Every night lying in bed I imagine having a call for transplant, and it breaks my heart that the phone doesnt ring. I don't want another year of worry, constant struggle, and being scared out of my mind. The hardest thing to bear is that someone could change this for me, someone could literally give the chance to achieve all my dreams and wishes. Thats all I want, a chance.
I have always said I will be honest, how else can you know what life waiting is like? Today my christmas tree broke, a silly thing but it just opened the flood gates of woe. I am sad for my uncertain future, my perhaps futile hope of a better life, the fact that Christmas my favourite time of year is not as happy as it used to be, the pain, struggle and breathless exhaustion that will accompany any festive cheer, that most people will take so much for granted without realising how much I would give to spend a day in their shoes and having to keep trying every minute of everyday for no reward. Today I spent most of the morning in an angry rage and most of the afternoon sobbing, until my eyes were puffy and I was enveloped in a cold sweat. Watching Les Mis concert DVD and allowing it to squeeze every ounce of suppressed emotion from my body and soul. Do I feel better? Not really, I just feel numb. I don't have a choice, today has been self indulgent tomorrow I must try to pick up the pieces and carry on. If you haven't signed up to the donor register please consider it, you do have a choice and you could change a life in more ways than you could ever imagine http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp