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Thursday, 8 August 2013

'We can't relist you'

So yesterday me, stu and my mum sat while my dr, nonnie told us that there was no way I was going to be put on the transplant list and that they were arranging palliative care. I had only a few weeks left to live. We were devastated, my mum and stu were in tears and I was just shocked. This was based on my reflux test still coming back positive. We rung loved ones in tears and watched as our world fell to pieces.

Today we had another test, this time the team came and told us that the test had come back ok and although i still had reflux, they were willing to put me back on the list and would be able to do a emergency op afterwards to sort out any reflux but I would have to be peg fed to stop any reflux damaging my new lungs. I still only have a few weeks window for transplant as I'm so ill and unfortunately I have extremely high anti bodies of 80% meaning the likely hood in getting a match is very slim and there is no way they can bridge me on ecmo this time. So once we miss the boat it is truly missed and there's no more tricks up our sleeves.

This means palliative care is still very important but we have a chance, a small window of hope. They repeatedly said if anyone can do it I can! Please keep praying for me and hoping that this small window is all we need. We have had some desperate and devastating times in the last 24hrs. I am now using bipap when needed and unable to walk anywhere. Just to visualise how far we are into the rabbit hole already.


- Posted using BlogPress from my iPad

109 comments:

  1. Kirstie... I am so sorry you and your family are going through this, and at such a young age. I have followed your story since you popped up onto my screen a few years back, and I've preyed for you when you were poorly, and cried watching your wedding day. There is hope for you still and you and your husband and family have to stay strong until that day arrives again, you have done this before and you can do this again.

    Preying for you every day you get what you wish for, preying another selfless person can give you a new life once more, you truely deserve that chance.

    Good luck and keep thinking happy thoughts, and cherish life.

    With love Lauren and the Marston family

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  2. Fingers crossed for you Kirstie, take care and keep fighting xx

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  3. Thinking of you Kirstie, you are an inspiration to everyone for sharing your story, both sides of it are amazing xx

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  4. I have seen your documentary in Canada one year ago and follow you on FB since then! I have never met a person who loves life and lives life to the fullest like you do! You diserve that new transplant and I truly believe that it will happen! I will pray for you amazing girl! M-Ève xxx

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  5. I don't know what to say other than I'm glad a tiny bit of hope is still there and I'm praying for you xx

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  6. I've got everything crossed for you and thinking of you all the time. Wish i could give you a big (gentle) hug xxx

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  7. Oh god Kirsty, you are in my thoughts and prayers. I can't imagine how you face this, but know that you are in the thoughts of so many people around the world, all willing the very best for you.

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  8. God bless you kirstie. Sending you positive thoughts and prayers your way. You are brave beyond belief hold on to hope stay positive til the end and put all the energy you have into breathing. You dont need to talk your family know just hold tight. Life is too cruel at times but you live it to the full and embrase every second. CF timebomb you have carried has made you who you are. Beautiful determined and so thoughtful to others you have saved many lives by sharing your story and campaigning so hard. Rest now gather strength and know your army of followers your friends and family are cheering you on hoping that call comes and whatever happens you have inspired and will continue to. You are amazing as are your family and I agree if anyone can do this you can. Take our strength its yours take our love its yours take our prayers there yours. Just wish I had some spare lungs to give you the life you deserve xxxnataliexxx

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  9. I can't imagine what yesterday must of been like for you all. I'm glad now there is a little hope, no matter how small a chance then there's a chance. I will hope, pray, cross everything etc the perfect lungs come along for you. I've recently been reading a blog about a lady who they thought there was no chance and is now doing well with her 2nd transplant, I really hope to read similar on your blog too xxxx

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  10. Sending prayers to you Kirstie, best of wishes to you.

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  11. If anyone deserve a miracle it is you!! I have followed your story for more than a year now. I was so happy for you and with you after the transplant, now I sit here and feel so sad for someone who is a total stranger and yet you made such an impression on me.
    All my best wishes, crossed fingers and prayers for you and your loved ones!!

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  12. Everyone will be praying for you Kirstie!! You have touched all our hearts and we are all Team Kirstie x you are so strong, don't ever give up, even when you feel you've had enough just hang in there! You know you can win this fight xxx

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  13. You did this once Kirstie, you can DEFINATELY do it again. Daily prayers and thoughts coming from Ireland. Really praying hard for your second miracle. xx

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  14. Keep fighting Kirstie. Keeping everything crossed for you. Take care xxx

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  15. Keeping my fingers crossed for you in the next few weeks Kirstie, as we did for Kate last year and this year. The decision that they WOULD re-list you after all, must have been such an enormous relief. Wishing very hard for a donor for you - all the info about donors goes up on my facebook. Our thoughts and best wishes are with you, Helen xxx (KAte's aunti)

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  16. Oh baby I am so sorry..But if it's ok I will keep praying and hoping for another miracle.We need more positive teachers like you..I was just listed for a single transplant. ..Your story gives me strength snd courage..always in my thoughts and prayers. ..Joanne

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  17. hey baby girl keep that smile going, you have been thro more than most people could possibly understand and you can beat this my thoughts and wishes are with you and this very difficult time
    you inspired me to go thro with my transplant so u changed my life for the good i just hope someone can change yours again for the best x smile baby girl

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  18. such sad news Kirstie, keep fighting you're an inspiration, always remaining positive despite being so poorly, and you have raised awareness to the importance of organ donation. Take care sending you hugs xxxx

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  19. My thoughts and prayers are with you. I've been following for a few years now, and I admire your strength so much.

    Sarah, Manchester

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  20. i'm so saddened to hear this, but i will hold out hope! my prayers are with you and your family for comfort and peace in whatever the end result may be ... it has to be tough to go down this road again, but STAY STRONG and FIGHT!!!

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  21. Michelle in Australia8 August 2013 at 06:07

    {Hugs} & love from a fan in Australia. Hoping across the miles that you get a pair of lungs and can be well enough to go into surgery to get them.
    A promotion campaign we had here a while ago went like this:
    "Don't take your organs to heaven, heaven knows we need them here."
    xoxoxoxo

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  22. Will Pray for you Kirsty - your are an inspiration ... I saw you on Daybreak and you were brilliant :) Sending you lots of love xxx

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  23. Dear Kirstie,
    At fist I would like to introduce myself. My name is Juliana and I'm from Brazil. I apologize for my poor English.
    I watched your story on discovery home and health and become your fan. I found it amazing how you fought, and I'm sure that this time you will get well. Continue with your strength, and try harder to be positive. Try to understand what life want from you and do your best as you are doing.
    It is obvius that faith in God is unquestionable, and everything we want it very badly, and the more we visualize what we want, the universe conspires positive to us.
    i'm sure everything is going work out, anyway you are in my prayers.

    A hug affection
    From your fan,

    Juliana Cupini

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  24. Hi Kirstie ,i do not know you but you must keep fighting .Think everyone is thinking of you.Take carexxxxx

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  25. Hang in there Kirstie, I'm so glad they are resisting you! If I could give you my lungs I would. You are an inspiration - I saw your doco in Australia a little while ago, you and all your family and friends are so brave, keep fighting, hopes and prayers for you!!

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  26. Continuing to pray that you will get your chance, all my love to you,Stu and your family. Hoping for a call for you real soon!Anything I can do please let me know?

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  27. Beautiful Girl - Yes, if anyone can do it, you can. Sending all good thoughts to you, your family, and your caregivers. Peace and love to you from me.

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  28. Kirstie I am sorry you are in this position again and am praying that your window stays open long enough and that you keep positive as it has such a good effect. Sending all my love and strength to you. Louise xx

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  29. Heartbreaking for you. I'm going to cross everything and keep you in my thoughts. Love Siobhan x

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  30. Just keep hoping, I am for us both, I'm waiting for my lungs but also have high antibodies due to previous liver tx caused by cf, I hate it, but there's still hope, I have such a supportive bf n family n I know u do, so with them around it'll help, it's rough n hard work but your a fighter like me x good luck x

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  31. I hope you'll get another chance to live!! You deserve it so much as you are very courageous, I wish I could give you a hug!! I keep hope for you!!

    Julie from France

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  32. Hi Kirstie, my name is Monica.
    I just wanted to say that ever since I watched your documentary on Norwegian TV approx a year ago, I've been following you. You are such an inspiration with your strenght, courrage and positive thinking and I will forever be touched by what you learn me about life. I understand these days aren't easy for you or your family - and I just wanted to hopefully participate in giving some inspiration and strenght back to you. You've already given so much to so many.
    Look how many people commenting, likeing, backing and following you! How many people who loves you. How many people who has been touched - only by you! It's no doubt that you're here for a reason.
    And remember that as long as you're here, your mission is stil on!
    Keep on fighting, as hard as you can.
    I sincerely hope that you feel better soon, and that when you've won and conquered this final big wave, God will let you surf on easy water for a long, long time!

    Never give up, Kirstie!

    Now show the horrible, horrible CF that it has NEVER met ANYONE like YOU! :-)

    Wish you all the best,


    Monica

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  33. Oh Kirstie I am so sorry for you and Stu & your family at the devastating news yesterday. The fact that after that there is now a small glimmer of hope is something for you all to cherish and hold on to.
    You've done this before, you can do it again; if anyone can you can.

    You are a truly special person & you deserve another chance. I've put your story on my FB page in the hope that it will increase the awareness of the importance of organ donation countrywide & worldwide.

    Thinking of you lovely girl with hugs & prayers.

    xx

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  34. We are all keeping positive that you'll get another miracle! You did it once, you can do it again! hugs, love & prayers from California

    xoxo
    Lori

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  35. You are in my thoughts Kirstie. Keep fighting. Like you said, there is still hope. Much Love x

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  36. Keep fighting. Never ever give up.

    From a mom of 2 cf'ers

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  37. I'm so sorry!!! I hope they can figure something out fast!!

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  38. So sorry hunny xxx

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  39. Keep Going!!! Good luck x

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  40. I am praying for you every day. So sad to see this but also positive that they decided to relist you. Hope you get your call xx

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  41. Praying for the best outcome. There is still hope... please, focus on that and keep up a positive attitude. That is very important! XO

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  42. Keep strong sweetheart, we are all praying for you xxxx

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  43. Praying for you Kirstie. I admire how strong you are through the whole of this ordeal, plus your last transplant! Keep the positivity and strength you have; everyone who knows you or reads your blog must be so proud of you. Hope you get those lungs! xxx

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  44. I remember watching the programme you did awhile ago on tv, about the run up to your transplant, i was in tears through most of the programme,you are such a strong,positive thinking person, and I had the pleasure of meeting you at Hen Fest! You are an inspiration to me and so many other people, thinking of you and your family, in my heart and prayers, i really hope you get the call soon!

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  45. Keep Fighting girl, you are such an inspiration. Praying for the best outcome, you are loved by the CF community for sure!!!

    -cysta

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  46. Sweetheart, you are an inspiration.
    My beautiful niece has CF and it's heartbreaking to think your situation could be hers at some point.
    I send you all my love and wish there was something I could do beyond write these words.
    I wish you peace and the strength to not give up.
    All my love. Leah. xxx

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  47. I've followed you for a few years now and I'm so sorry to hear what's happening to you. I'm heartened to hear there is still a chance and no matter how small it is still a chance. Try to keep fighting like you have in the last few years and hang in there for the new lungs that I'm sure will come to you. I'm thinking of you and your family and keeping every thing crossed for you. Sue (Mum to a CF angel) x

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  48. Oh Kirstie I am sending you and your family all my thoughts and prayers. I am a nurse and have taken inspiration from for many years now and you continue to inspire me and many others with your courage and fighting spirit. I never doubted you would get your first transplant and if anyone can do this - you can. XXXXXX

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  49. I am agnostic but I will pray for you if it helps. Your bravery and positivity is commendable and I will be sending as much healing and loving thoughts to you as i can. I wish you well honey, stay strong xxxxx

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  50. Wishing very much for a donor to come through for you. Keeping you and your family in my thoughts. Please do not lose hope! xoxo

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  51. Your spirit is beautiful. So much change, so suddenly. Look everything in the eyes and keep brave. You are so loved!

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  52. Thinking of you and your family each day and praying a beautiful set of donor lungs come through for you. Stay strong and keep thinking those positive thoughts. Wishing you all the very best.

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  53. I don't know you but I am thinking of you and praying for you and your family, keep strong and keep fighting, don't let this win. xxx

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  54. Praying you get your second chance soon Kirstie , never give up hope ... Love Mags , Jess Brenwoods mum xxx

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  55. hi kristie, in my mind i push very hard to open that window for you ! Fingers crossed here and in the meanwhile, let the love of the people around surrounds you !
    Hang on there ! You're strong!

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  56. Am sending so many positive thoughts your way. X

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  57. cannot begin to imagine how you or your family feel, I only add my meager prayers that you get re-listed and the miracle you deserve happens.

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  58. Fingers, toes, everything crossed. You only need a window & I'm sure that will be enough x

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  59. You don't know us as we don't know you. That's no matter as you're a young, beautiful, sweet gal who deserves life & we will pray you can fight this battle & get those donor lungs you so deserve.

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  60. Hey kirstie, can't imagine how frightened you must be. Share every minute with Stu & your family. I think of you every time I drive into Spindlewood, home. Will keep everything crossed that that match comes up soon. Xxx

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  61. Kirstie, from the bottom of my heart, nobody diserves a second chance as much as you do! I am really sad that you had read somme stupid comments about who should get a transplant or not :(

    When I saw your documentary or when I look your pictures on FB, I see LIFE! Your are LIFE Kirstie! Your eyes, your smile, your voice, everything you are show life! So please, do not pay attention to the stupid comments and lets hope for your second chance!

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  62. Prayers are being said for you all over the world, right now.

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  63. you are amazing xx thinking of you xx Hajer Miller

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  64. Kirstie, they are so right, if anyone can do it you can! You are so strong and such an inspiration. I am constantly in awe of your shear determination. You are in my thoughts. xx

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  65. Thinking of you. Keep believing & stay strong xx

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  66. He Kirstie. I'm a 73 year old Irishman. I havee walked over 1000 miles through France and Spain on the Camino of St James in solidarity with victims of Cancer. I'm not good at praying but on the Camino every step is a prayer.
    In September I will be walking 400 miles up through Portugal to Santiago due Compostela. I will dedicate ones walking for your intention and all my steps will be Prayers for you.

    God bless you

    Donal

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  67. Hoping you get another set of lungs and a second chance of life. Have faith and hold tightly to hope. If only people who have not experienced transplantation could realise how precious life really is. You've been so strong throughout and you are an incredible inspiration. From a heart transplant recipient. Stay strong. xx

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  68. Kirstie, I remember following your blogs when you first went on the transplant list. My own daughter was also going through the same process, she, like you was strong and inspiration. She would write her own blogs on the cysticlife.org site and her words mirrored yours even though she knew nothing about you. I watched your documentary and cried at your wedding. I was so please that your transplant went well, I only wish I could say the same for my beautiful girl.

    You are such a strong girl and have such great support, I will keep you in my prayers and ask my girl to watch over you.

    Dont give up xx

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  69. Ive actually read your story on facebook, I feel so bad for you, and to think u have already been through so much already, I admire ur possitive attitude, it amazes me how you do it, I wish u all the best and thinking of you and ur family! Xxxx

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  70. Sending huge love and respect for you Kristie. Share your story opened so many peoples eyes that this can happen to anyone, disbility and illness doesnt discriminate.

    Keep that determination never let it leave you. im in awe of your strength

    Sending love xxx

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  71. Where there's hope...
    In my prayers
    Lisa xx

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  72. Hi kirsty your story has made me put my name on transplant list xxx

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  73. Praying for you and hoping that you remain calm and positive at all times . Truly hope the second gift of life comes our way xxx

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  74. Sending love, calming and uplifting vibes and hope in abundance xxxxxxxxxxx

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  75. Sending you love and strengh. Xx

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  76. kirstie, u are an inspiration to all who have read about your situation. u have shown you are a true fighter, so brave and strong. u have made your family so proud and even strangers all over the world. you have battled through once and we all hope and pray you can do it again. you are scared, but you will pull through. prays are coming in all over the world for u and your family. you are truly amazing. I am thinking of u all and looking forward to the good news. I wish u well honey and stay strong xx

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  77. Your such an inspiration to everyone especially when you had your first transplant. I signed up straight away to the donor registration after watching your documentary. I really hope things come well.for you as you have so much to give. Thinking of your family and you at this time x x

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  78. Kirstie you have shown remarkable strength of character and I know you can get through this. You've been an inspiration to so many people and you have so much still to give and so much of life still to experience.

    I wonder have you looked at all into healing meditation and creative visualisation? If not something you may consider but obviously keep following the advice of your doctors first and foremost that goes without saying.

    Meditation and the healing power of the mind is something I've only recently looked into (mostly picked up from Paul McKenna) but perhaps you could try things like visualising yourself inside an energy field and visualise yourself healing. Perhaps visualise the damage to your lungs stabilising and reversing or visualise cells repairing themselves. Whatever you think works for you and is easiest to clearly visualise - I don't fully understand these things myself (though I think whatever helps you to have complete focus on healing is more important than the detail of what you visualise) but if nothing else it helps with stress which is the last thing you want to be under at the moment.

    Also when meditating focus on gratitude for healing and gratitude for the arrival of new lungs.

    I don't know how much of a difference it would make but perhaps you could also spend an hour or so a day to visualise your body accepting your lungs.

    I do know stories of people who have overcome severe conditions with this kind of thing (I think faith healing is also along the same lines)including a professional footballer who overcame a knee injury without the surgery he was told it required.

    A story worth looking into is that of Morris Goodman "The Miracle Man" who was paralysed in a plane crash in 1981. Months after doctors said he would never walk again because of a crushed spine or breathe without a ventilator because of the damage to his diaphragm he was released from hospital. What kept him going was the absolute determination that he was going to "walk out of the hospital by Christmas".

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  79. Kirstie, I have been following your story for a couple years now and I'm so so sad to hear that you are back on the list again. Please know that you have been a real inspiration and encouragement to me as I have a lifelong autoimmune disease. It is also because of you that I registered to become an organ donor. I hope you will continue you fight with everything you have and know that you are in my prayers daily. xx

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  80. It maybe a small window, but you are sure as hell small and agile enough to fit through it.

    You have shown them before, you dont need easy, you just need possible. Times are tough, but it is the hope that pulls you through each day. Get plenty of rest, or as much as hospital allows and keep fighting the good fight. Someone is watching over you, to get this far.

    Sending healing vibes
    Kim

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  81. Hi Kirstie. One of my best friends has CF and she is one of my biggest inspirations whether she knows it or not. She pointed to your blog as something that inspired her and I just wanted to say, that although I'm close to tears from just reading this, and that thinking about your shitty shitty butt-fart McLuck makes me rage at the unfairness of the world.

    From just the 15 minutes I've spent with you by reading your blog, I already can't believe how amazing a person you are! Keep up the fight, as although you've not met us, there are so many of us out here who would do anything for you just for you being you.

    All the thoughts a sleepy person can give.x

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  82. Kirstie,
    You are such an inspiraton to all. My thoughts and prayers go to you & your family. Keep up the strengh & keep fighting. I hope a transplant is in the very near future.
    Sending love & prayers from Nebraska

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  83. Hugs and prayers that you get another chance. It's crazy how some people just take their health for granted, tossing it away, while others like you, and others with CF and those on transplant, are literally fighting for every breath. Blessings for strength and courage for you and your family.

    ~ Toni, a fellow "Cyster"
    www.therpink.wordpress.com

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  84. Oh, man...I wish I could take your burden for you. Fight hard, kid. Lungs will come.

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  85. You've had a miracle before and you can have one again! Lots of love xxx

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  86. Whatever happens in your life you have done more for the world in twenty and a little more years than most people could manage in 100. You've got so much determination and strength and your attitude inspires me every day. As you say, if anyone can do it, it's you. X

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  87. Hi kirstie
    Hoping and praying for you
    I have cystic fibrosis and you are an inspiration your so brave and always smiling even thru bad times,
    Thinking of you all at this time xxxx

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  88. Marieta van heerden9 August 2013 at 01:46

    The God i serve is a WONDER-WORKING GOD!! NOTHING IS IMPOSSIBLE FOR HIM. God our Healer -the ONLY Healer -we put Kristy in your hands and we ask that You DO what is best for her and her family. Your WORD says "...BY MY STRIPES YOUR ARE HEALED...." AND WE PRAY THAT IS ALSO TRUE FOR CHRISTY! May God bless you and keep you safe.
    Marieta

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  89. Thats fantastic news Kirstie. Josie and I are thinking of you and you are all in our prayers. I really hope it all works out. I was just looking at the lovely picture of you, Sue and Josie at our charity ball and now you are all struggling, life can be difficult but you all put on brave faces. All the best.

    Paul M x

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  90. Australia is praying for you, keep good thought's and please hug your family,while they surround you with love and know the world and people with cf understand your fight.
    AUSTRALIA is SENDING PRAYER, TO YOU Kristie.xxxx
    grandma australiaxxx

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  91. Kirstie, I am sending so much love and prayers your way. Stay strong inside, your positive energy will make this work out as long as you truly believe (which I have no doubt you do). Love from a mum of two mini cfers x

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  92. You are in my thoughts
    xxx

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  93. May your miracle come and things get better for you. My thoughts and prayers are with you and most especially your family during this frightening time. Stay strong my fellow Cyster, *hugs*

    Leann M
    32yrs w/CF

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  94. such a heavy burden for you to carry . but your one strong girl , and as long as that window stay`s open ,there`s every chance that you will get through it , loads & loads of positive mental attitude will have got you to where you are now , so keep that chin up and carry on as best you can. thinking of you and sending lots of love .

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  95. sending you tons of good energy.
    from the mother of a CF patient
    RSA

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  96. Keep fighting, praying for you and yours x

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  97. Praying for you ! stay strong !

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  98. Corageous,strong girl.Never give up.Live everday and do your best. XOXOX

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  99. Ive just got in from a nightshift working on neonatal intensive care. I saw your Fb update and Im so very pleased to hear you call has come again. Praying for you and willing you through the surgery. I see miracles unfold on a daily basis modern medicine is amazing but without true inner strength and determination I believe it can only do so much. You as are the tiny vulnerable babies I care for decide the rest. You go to sleep knowing we are all eagerly awaiting news you can do this hun no tears be brave and believe in yourself hold tight to hope and love. You are amazing !! Godbless and keep you safe xxx

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  100. Just saw on Twitter that your window is wide open....amazing...thinking of you this Saturday morning as your 3rd chance begins. xxxxxxxxxxx

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  101. Wow!!.... I cannot imagine how you are feeling and am in awe of your bravery. I'm not the religious type but am truly hoping that the powers that be will let you make a full recovery and lead a full and healthy future.... Looking forward to your next blog on here after the operation that I have just read about on my friends Facebook page.... ;-) x

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  102. Keep your eyes fixed on Jesus as He is with you in this world and the next...someone once said if we could see the whole story including heaven and eternity we would see that our time on this earth is only the start of our journey...trust in God and keep the faith even in our darkest hour, even then we will find peace knowing we are safe in the arms of Jesus in this world and the next... Fear not for the Lord is with you... You are in my prayers, love & God bless Simon UK

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  103. I am praying for you my dear, god bless you.
    You are strong, you can do this.

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  104. just heard that you got your second transplant ,keeping everything crossed that all goes well , thinking of you & sending lots of love.

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  105. I hear on the grape vine you got the call for a second transplant it seems God heard our SOS ! Praying that all goes well with your new transplant...thank you Lod for answered prayers.

    Simon

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  106. Jesus said " anything you ask in my name and really believe you will receive it; your shall have it" . Many people believed what seemed impossible, as nothing is impossible to those who have faith in God.

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  107. "nothing is impossible for those who have faith to believe"... Thank you Lord for being with Kirstie in her hour of need.

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