I'm all shook up...

I'm really loathed to write this blog entry. I don't want to write about feeling down but this blog is to record the highs and lows of life on the list.

First of all let me say before I go any further, that if I had the chance to go back and erase my false alarm I would not do it. I am grateful to have experienced a false alarm, some people on the list aren't even that lucky. It WAS a very positive day.

Unfortunately it has hit me harder than i thought. I've spent 8 months on the list now,and although I think about transplant most of the time, subconciously I started not to tense whenever the phone rang, not to suddenly think "they could call any second" not to lay down to go to sleep and think that my life could change in an instant. I was always aware that it could but I became more settled than when I first went on the list.

After last Tuesday however, after all the excitment, and shock and exhaustion are gone, I'm left with a feeling of sadness that it didn't go ahead and a terrible longing for Harefield to phone me again.
This wasn't my chance, but it makes everything seem more real and I just want to know they will phone again, that one false alarm isn't all i'll ever get.

I desperately want to talk to someone about it all and have done repeatedly. But the answers I want to hear are answers they can't give me. I want someone to tell me that it will be ok, and that they will phone again with the real deal. For someone to give me the security to know that the prize is there waiting, no matter how far away, but that it is definately there.

But no one can.

I suppose its the thing of "giving with one hand and taking away with the other" While the experience has given me renewed hope (which i still have more than ever), it has also shaken up my whole world again, leaving me feeling the way I do.

Lots of people who have experienced the same thing have told me that this is natural and things will seem better soon, which I'm sure they will. I'm also having some other hassles at the moment which don't help.

Sorry for the whinge, i do count my blessings everyday but this has knocked me for six.



  1. Tor, dont worry, you'll get your lungs when you least expect that phone call again. My sister also got a double lung transplant, and before getting her set of lungs, she had 2 false alarms. Just be glad that the doctors do inspect the lungs to make sure it wont cause problems in the future.
    Hang in there!

  2. hey tor

    i am so sorry your feeling like this at the mo.
    i dont know what to say i wish soo much i could say what you need to hear.
    i did know someone years ago who had her transplant done on new years eve
    but it did happen!!

    please text or email whenever you need to rant or rave!

  3. Oh Sweetie, I'm not surprised you have been so knocked back by this. But you WILL get those lungs, I just know it. Those lungs were never meant for you but there are some that are and that day will come when the phone rings and everything falls into place. Stay strong Sweetpea xxxx

  4. Tor, don't feel down sweetie, I know it's hard and the uncertainty is even harder but we need to be strong, continue what were doing and look for that light at the end of the tunnel because if there isnt hope what is there? No one can reassure us that we will get those organs but the longer we keep chugging on the more likley it will be. Last week wasnt your time, those lungs were not good enough for you because you deserve the best set in the world to enable you to run, dance and sing around that stage so when they do find the perfect pair they will call you and you will be singing until your heart is content.

    All my love, Sam xx

  5. Hiya hunni I found your blog....yay!!
    I'll be having a good old read of it to get up to speed over this big weekend off work.

    Meanwhile big (((HUGS)))
    Sue x