12.04.2009

Third time unlucky, and my christmas wish

I can't believe I'm posting this so quickly after my last false alarm but yes,my third time has been and gone without the transplant going ahead. It happened last Thursday (26th) at 12.15am, I couldnt believe I was getting another call just a month after my last one. Usually the calm one in the family during calls, I have to say it hit me differently this time and i paniked a little bit, managed to calm down on the way there. Although the weather was appalling, we got to Harefield quickly, canula went in first time and has really made me feel better about that side of things again, so thats a positive. At 4.30am we were told the donor lungs were too damaged and came home. Got in just as my parents alarm was going off at 6.30am.
So thats what happened. Whats harder to pin down is how I actually feel about it all. Gutted is an obvious one. Hopeful that the two were close together and desperate that call number 4 will be soon. It somehow seems less impossible when the calls are close together... Mentally,physically and emotionally I feel drained and run down. It takes its toll and can catch you off guard. I randomly burst into tears and realise i'm just hoping with every part of me that THE call will be very soon. I start to hope I won't be here for xmas that I'll be at Harefield instead. The things that seemed such a big deal like present buying don't matter so much anymore and the things that seeemed terrifying like canulas and chest drains shrink in their importance too. If I'm honest I have felt a slight decline in my chest these last few weeks. Not caused by infection or a problem but probably (hopefully) by stress, emotional toll and exhaustion. It scares the hell out of me. I have been using my oxygen mask as its easier to breathe with this but its also a constant reminder. It makes me want that call even more.
As the years go by on the list Christmasses get harder. I am the one who loves Christmas most in our family but lately its hard to muster the joy. It breaks my heart to admit that. When you dont have the puff to buy and wrap your own presents, decorate your xmas tree or go to do any of the normal Christmassy thing you have always enjoyed it is very hard. I am so grateful to be here but I wish I could know how much longer I have to wait and if the waiting will ever lead to what I want. I don't want my illness to change me, its hard to stay positive when every day is a new ache, pain, problem to battle, I'm not always how i want to be in myself. I used to wish I could go back to how I used to be when breathing was easier, in hindsigh it probably wasn't that much better. Instead my Christmas wish is to go on and become the person I want to be,could be. I just need a chance to do that first.
I don't want my last christmas to be one of forced smiles, incredibly effort and unspoken worries that lurk in our minds, I want it to be my dream christmas with new lungs and new hope.
Please pass this link on to others to sign up to the donor list, together we can get the word out.
I'm sorry if this has upset anyone (I'm certainly crying right now) but I had to get these feelings out that have been eating me up.
xxx

24 comments:

  1. You brought tears to my eyes, my Christmas wish is for the call to come for you, I hope that you have many many more Christmases with a smile on your face because you deserve it. X (Tops1962)

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  2. praying for ya every day hon! M xxx

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  3. Cathy (chrikes - Twitter)4 December 2009 at 12:06

    Awww, Victoria I so feel for you and shed a tear or two myslef reading that. You are so brave and always seem to be so positive about thing. I hope & pray that the next call with be THE one for you

    Loads of love & hugs to you XXXX

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  4. Hun you are totally amazing and I remember how hard it ia to actualise your thoughts and feelings in words. It can be cathartic and I hope it has been for you. The thing with waiting for a transplant is its always so hidden and its courageous people like you that help increase awareness and understanding. I pray all the time that you will get that call sweetie...loads of love xxx

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  5. Very touching, I'm sure everyone including myself is wishing you the absolute best. I sincerely hope this won't be your last christmas and that you'll get the new life you want and deserve. Will be thinking of and wishing for you.

    Sam (Grey__Wolf Twitter)
    x

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  6. That brings back some memories for me too - it is so hard seeing people around you enjoying Christmas and trying so hard to join in - but your heart is elsewhere. I hope your Christmas dream comes true and next year will be a new beginning. xx

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  7. I am so sorry it was a false alarm again. You are so close now ....... it is going to happen, stay strong.

    I am currently working on a post about organ donation - hope to get it out to the blogosphere in the coming week.

    Good luck xx

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  8. So sorry you had another false alarm, you will get a good one-just hang on in there a bit longer :-)

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  9. I've followed your blog for a while, but am not sure if I've ever commented before. Thinking of you and hoping you soon get your call.

    Take care,
    Moll x x

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  10. Well done for articulating that so amazingly lovely, you're a total star, and there are so many people willing you on, including me, obv!!

    Lots and lots of love,
    Pops xxxxx

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  11. My thoughts are with you - you are so incredibly brave and your ability to keep positive through it all is inspiring.

    I wish you get everything you want this Christmas and my love and thoughts are with you and your family.

    Claire_wired (Twitter) xx

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  12. I hope you get your transplant as your ultimate Christmas present! I'm hoping for a call too, but I'd like yours to come so that everything doesn't have to be so darn difficult. Happy Holidays, I hope you can find the little moments to enjoy them, as hard as it is.

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  13. Praying u get another call from the hospital very very soon too. You are such an amazing person and I can only imagine how straining it must be to keep faith but please try. I, and hundreds of others who read your blog are with you xxxxx

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  14. Hi Victoria

    I wish you get a transplant soon, that's my wish for Christmas for you. There is just a beautiful light of hope in your eyes that is inspiring to everyone. May God bless you with the gift you want.

    -- Pranav (India)

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  15. Big hug, big smile, big box of tissues. I hope your day comes very soon.
    Lots of love
    K x

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  16. Just read your blog and it brought back so many memories. I was on the list for over two years, like you i was on oxygen 24 7, i needed a double lung transplant and things were getting worse.I seriously didn't think I was going to make it, I was told I may not make this christmas. Six calls were full of hope but only ended in despair. The months were flying by, it was now August 09 and another call, and I just thought here we go again, another wasted journey.
    11pm we set off too Harefield midnight we arrived. Its the waiting and the not knowing, to cut a long story short 7th call 5.30am I am in surgery, 16 weeks later Im writing to you.
    What I'm trying to say is 'never give up hope, keep postive because your time will come.
    My thoughts and prayers are with you and your family, all the best, Dave

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  17. Keep strong hun, you have been so incredibly brave so far. Thinking of you and hoping that the next call comes soon and that this time it is the one. x

    Charlie (blonde_atheart on twitter)

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  18. Good luck to such a heroic and brave lady. I am training to be a doctor and reading your blog brings home the true realities of living with such a devastating condition, I hope you will soon get your wish.

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  19. Hoping and praying that your wish comes true hun, this blog certainly made me cry.

    You write so articulately and openly about your feelings...

    Much love and hugs

    Thinking of you everyday x

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  20. I totally get you about mustering that Christmas joy!! I had my 6th false alarm call on the 23rd and it definetly hits you harder round this time of year!!

    Fingers crossed for a few christmas miracles!!

    Victoria xx (Tori or Tiny Dancer)

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  21. Oh honny, i am so sorry three calls is rough. we will be praying that the next call is soon, and that they are with good lungs...and that next year is a dream Christmas
    Laura

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  22. Hi Victoria
    My transplant came on the fourth call...I only had a single due to Alpha1. Never give up hope Hun...positive thoughts always, It got me through. I have just had my 2and1/2 year,post TX check-up and am doing great!
    You won't be alone at Christmas or any time...We will all be by your side, every step of the way, with heartfelt love and positive thoughts and blessings
    keep strong sweetheart
    Stevieanne
    H/Wood, Essex

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