I dont want to go!

I'm at my CF clinic on Friday and I dont want to go! (Im assuming you guessed that already though).
I feel ok in myself etc but I always worry immensely when clinic beckons. I worry that I will pick up bugs from other patients, I worry something unexpected will show up, I get disappointed by the crappy test results (inevitable at transplant stage but still hard to take) and I get extremely worn out from the day and the journey.
Weekly weigh in shows more slow progress, now 44.2kg which I hope will continue to gain steadily. Please please please send all your positive thoughts, prayers and vibes in my direction on Friday, I really appreciate knowing that I have you all behind me and I definately need some support.

In non-hospital news I have had the result of silly market economy essay and I got a B unbelievably! I was very suprised not least because I still dont understand any of the concepts, but am pleased all the same. (next time I may write my essay about a completely unrelated subject and see what mark i get...)

I have felt a bit down this week. There have been a few transplant patients that despite recieveing that all important gift have sadly had bad results. One has found out they have chronic rejection, and two have passed away from complications. I dont know these people well at all but my heart breaks for them and their families. I cannot imagine how devastating it must be to get that all important call, start making plans for the new life you so desperately wanted and to have it snatched away from you. When transplant goes well it is the most life altering, amazing, miracle, but it is easy to forget that it is a hugely risky and complex procedure that doesn't work for some. I have found these cases very hard to deal with this week but it comes down to one question, do I still want to take the risk as well as the benefits of transplant? Yes I do. What hope is there if I dont? I would rather go down fighting than wondering what might have been. To those who lost the fight this week, you are an inspiration to everyone and your courage and spirit live on.

On a happier note today brings the news that the number of organ donors in the UK have reached an all time high. This is excellent news and there are many promises from government to increase these further. All the campagins and media attention is working really well but we still need to get those numbers even higher. The supermarket chain Tesco have taken up the challenge to which is fantastic news as they have the ability to reach a huge number of people. They have a big spread in their free magazine, which includes my story about waiting. You can read mine and the other stories here

Just before I go, I hope you like the new look blog, I really do! Also congrats to my American readers on gaining such a great president, Obama seems really clued up and I felt a huge sense of pride and emotion when I watched him being signed in. A day for the history books.

Please remember to send out some prayers and thoughts if you can on Friday, I really do appreciate it. I'll try and update over the weekend to let you know how it all went. xxxx


  1. Hey Tor,
    Sending lots of smiles and hugs to you. It's horrible when you have to do something that you really don't want to, but Friday will fly past. Once it's over then it's dealt with for the next while. I will be thinking of you on Friday. You're doing so well and I wish you all the best.
    Well done on the essay. B is fantastic and you really deserve it. You are edging ever closer to the hat!!!
    Speak to you soon. Lots of love x x

  2. you will always have our prayers, and i will make sure a few more get in there tonight for a good day tomorrow....it may alreay be tomorrow there, im just not good with the whole time thing. great job on the good grade, and i love the fact you are still willing to fight the fight of life if its 1 day or 50 years. as i sit in bed with this yucky flu bug thats been going around, and whining abot how crummy i feel, i will just look to you for my insperation and try not to be such a cry-baby.