Saturday 10 August 2013

Here we go again!!!!(Stu's update)

Ok this is unfortunately not Kirstie sending you this message but her wonderful husband Stu. Kirstie has asked me to pass on what happened today so you guys are up to date.

Well I'll start from Friday morning as Kirstie has already covered Wednesday and Thursday so mine should be a happier blog with less tears ( except for my dad.)
Started off as a normal day really nothing to strange from the last few days wake up go pee, drink, talk, watch TV and play on iPads and phones.
Visitors of the day were me(Stu) Kirstie's mum, Chris,Caz,Luke and Logan (Kirstie's brother and his little family) and also Lee (Kirstie's older brother).

20:40fri
After that not alot when everyone left me and Kirstie just chilled out on her bed watching TV, when we had a knock on the door to which a face appeared. I hadn't seen this face for two years so just thought he was working tonight and he just wanted to pop in and say hello. I didn't even registrar that it was Rob ( TRANSPLANT CO-ORDINATOR) so I just said "hello" he must of thought "twat". Which I was, he then went on and said its very early but we may have some lungs for you. I got up and started walking around the room in complete shock looking into my wife's eyes and knowing that we were both thinking ' already! That's crazy we only sorted this yesterday and now we are here' all I wanted to do was hug the guy as all he does is bring me good news ( he was the one who said it was ago last time ) be went over it was very very early and there are still tests and obstacles to get through first.

Once Rob left we just looked and said ' ok let's do this' we took the phones out and called the parents we decided it was far to soon to let everyone know as we were so far off. Kirstie then had to go on bi-pap as breathing became difficult because of the situation and she was struggling her mum came over later in the night as she couldn't sleep and waited with us for any updates on what's happening she was worried about Kirstie as she was visibly struggling and in the early hours we had to get more pain relief so she could get some sleep.

7:00sat
Rob came back and said everything was looking good even our biggest worry which was the anti-bodies, remember Kirstie's were at 80% which really put the odds against her. There was just the final checks and it would be all go. More phone calls to family letting a few more people know as we were getting close.

8:30sat
Ok it's ago 'your going down at 9:15' this was it phones out iPads going Kirstie wanted people to know she couldn't keep it bottled up any longer it was happening and we didn't have long. Kirstie got worse during this time her breathing was awful and it was defiantly time to do this. I guess for her this was her first time waiting going through the stages and waiting to go down as last time she was on ECMO and didn't have a clue. I was so happy for her this could give us more time together to complete her goals and fulfil her dreams.

9:15sat
We start the walk down to theatre we get there take a few photos say good luck give Kirstie a kiss then let them take her through.

That's it my mind now thinks about her previous donor and there family and the two years they gave to Kirstie and what she did in that time you all know so I won't go into detail, Im just praying that they know what Kirstie did and that they got Kirstie here, she really did do the donor proud she was non-stop in her goal to get people to be organ donors enjoyed life to the full and finally she had a bond with them one that I know played on her mind. She didnt want to let these lungs go they gave her so much she had so much respect for what they gave her.

I was also thinking about the current donor praying that they didn't have to suffer and thinking about the pain there family must be in I really have no idea how they are dealing with such a tragedy. I was in pieces after Wednesday and I still had Kirstie in my arms for a few more weeks. I'm so sorry for their loss and all I can do is promise you Kirstie will give these lungs the same respect and love she gave to the last. And thank you everyday for the great gift that they have given, we will also never forgot the last ones also thanking them everyday as without them she would quite simply not be here. Thankyou

22:30

So here I am now putting all this down after spending 10mins with Kirstie this evening, she was sedated and will not be woken until tomorrow and we have been told the op went well.
it was a long day of waiting checking the time and trying to answer messages texts and calls that were coming through. I didn't realise how many people follow her and the amount of messages she gets daily I know she try's to talk to everyone as she well loves to talk to people and hear there journeys and help people through there tough times whether it be patients going through tough times or family's watching loved ones struggle she always does what she can to help and she always gets upset when she can't.
I have so much respect for what she does and how she battles she has honestly changed my life for the better. It makes you realise the important things in life and makes you wonder what others do and some people's lack of respect for life.

So that's it all up to date any questions just ask and I will try to answer until Kirstie's back up and running then she can have this back not really my thing but I have been told I have to do this or I would get a slap. Trust me she isn't afraid to hit me given the chance.

Thankyou again to the donors and their family's as without I wouldn't be doing this right now. I will never go a day without thinking about you and thanking you everyday for your gift not just to Kirstie but to me and the rest of Kirstie's family and friends we are all very very grateful
Xxxxxxx

Stu



- Posted using BlogPress from my iPad

Location:Harefield

76 comments:

  1. What a blessing they found new lungs for her again. I just started reading her blog a few days ago, and when i logged on today i saw your update. Prayers for a successful operation and a speedy recovery.
    brenda, from Texas

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  2. Wow Stu... what a rough time its been for you snd kirstie but thanks so much for the update. I cannot imagine what you go through as a family but coild identify with kirstie As myseld am a cf sufferer whose been declined a transplant and has only weeks/ months left. I am so so glad kirsties call came just at the right time and wish her a very speedy recovery. Thinking of both donors who have given kirstie a second and third chance at life and allowed her to fulfil her dreans and to raise awareness for others. A very much loved, beautiful and inspirstional person. Continue fighting kirstie
    Ps stu - im glad you posted to avoid a slap from kirstie - your in my thoughts too xxx

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  3. Just wow....I am amazed and thrilled that Kirstie and you Stu are getting this 3rd chance! Kirstie has brought so much awareness to CF and lung transplant!! Best of luck from across the pond, near Boston Ma, from a fellow CFER!
    Tracy C.

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  4. my thoughts are with you all and prey for the family who donated for Kirstie and prey everything goes well now . I have enormous respect for donors and will also encourage fellow friends ,family to register. I cannot begin to imagine what worry you all go through.I do know how hard to see our loved ones struggle to breath,I work along side a nurse in The Hospital who has good and bad days,weeks,months and sadly my mum had diseased lungs.Kirstie you trully are loved by us all (complete strangers so remember we are all behind your recovery and xxxxxxxxxxx to you and your Stu and family x

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  5. She will be happy you posted this. Less tears no I still teared up the whole way through giggle about her given the chance to hit you. I hope to hear from her very soon such good news for the transplant happening so soon. Stay strong hope to see a update tomorrow sending lots of love xx

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  6. Great news! Kirstie is in my prayers xxxx

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  7. That's absolutely brilliant that the op has gone well Stu. Fingers crossed that she makes the full recovery that she deserves. I can't imagine what you have all been through these Last few days, you must all be exhausted both mentally and physically.
    Look forward to hearing about her recovery In her own words in the very near future. ;-) x

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  8. Can't tell you how happy I am that Kirsty has been given this second chance. Fingers crossed for a speedy recovery x x

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  9. Fantastic news! So glad to hear the op went well, I hope Kirstie has a peaceful night and a speedy recovery! I have never met Kirstie but I have followed her blog since before her first transplant, so I know she will power through this, even though it may be a tough time for her. Sending lots of love and positive vibes! Kat xxx

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  10. Thank God for getting Kirstie this far. Breath by breath.... I pray now that you all have the best sleep possible as you'll need every ounce of strength for the coming days. All my love & prayers Maria x : )

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  11. Thank you so much for this last post. I have been following Kirsties blog and was so relieved that a donor had been found and I too have been thinking about the donor's family. What a gift they have given. Kirstie is a lucky lady to have found you and you indeed a lucky man to have someone like Kirstie in your life. All any of us can do now is send our love, good wishes for a successful operation and outcome, for those of us that believe, pray to our God, and for those that don't believe keep you both in our thoughts and minds and send healing thoughts. xxxxx

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  12. Thinking of you all so much and keeping everything crossed for Kirstie. She is truly inspirational and such a fighter. Love and and hugs to all xxx

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  13. Bless you both Stu! I am so happy you have been given another chance. Kirstie is amazing. And you have been so incredible too. I hope everything goes well from here. xxx

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  14. That is one lucky woman getting the second pair. What a mind blowing, emotional experience. Good luck with the recovery Kirstie. Thanks for the update Stu.

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  15. Hi Stu (and Kirstie)!
    I watched the documentary about Kirstie with my Mom in June when it was shown here in Sweden so I've only read her blog since then. I was so happy for her sake when she got the lungs and everything seemed so perfect in the end of the documentary. Of course I know that the body can refuse to accept the new organs (even though I don't know so much about cystic fibrosis, more than what was shown in the documentary & what Kirstie have written here) but I actually didn't think it would happen to Kirstie since it seemed to go so well. But now when it happened I'm happy that she got a new operation when she needed it and I'm really hoping it will go well this time so she (& you & her loved ones) doesn't have to go through this again! :)
    Take care & XOXO to you both!

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  16. I have wondered how Kirsty's going we are a day behind you in Australia, thanks Stu for giving everybody an update our prayers and thoughts are with Kirsty, you and her Family and her donors Family.
    God Bless you are a wonderful husband.

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  17. Ah what a lovely lovely couple you are just each others strength . So pleased to hear the Tx went to plan been in my thoughts today ive been checking fb for updates. I hope you all get some rest tonight and tomorrow brings a new dawn and your sunshine girl wakes bright and beautiful as usual. Its been so very tough I know there are yet more challenges to overcome. This time round kirstie has gathered more strength from her
    1st tx and the gift of healthy donor lungs no 1 have allowed her to be active and fighting fit until the last few months. So hopefully the recovery will be starting a little smoother. Huge grin on my face reading your blog Stu thats what your wife does makes us all smile her zest for life lights up thr world. You must be very proud. Keep up the harf work Kirstie your doing fab. Inspiring gracous and corageous you lovely ady are brave beyond belirf as are your whole family. Life is yours for the taking grab it with all you have and live each day to the full. Bsby steps now giant leaps later.much lovd natalie xx

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  18. So incredible awesome!!! I followed Kirstie since I saw her documentary a few months ago, I couldn't believe she had to go through this all over again, but Im soo happy she got a new pair of lungs so fast. The power of prayers. God bless you and have a long life happy life together.
    Lety

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  19. I am so happy for the both of you. My thoughts and prayers are with you during this difficult time. I look forward to reading reports of a smooth and speedy recovery.

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  20. Breathe!!! Everyone take a breath for her!! Great news!! Keeping her in my thoughts and sending her all of my positive healing vibes!

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  21. Great news Stu. Here's wishing Kirstie a very speedy recovery.

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  22. Oh wow! Amazing. She got the call! Sending you positive vibes from a Toronto, Canada.

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  23. This is amazing, can't beleive it happened so quickly, im so happy for you Kirstie you are such an inspiration!! Maybe your last lungs were practice for the more amazing things you're about to do? :D may you have a speedy recovery but take it easy at first, all the best for your future xxxx

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  24. Beautiful Stu, can't tell you how pleased we are but also the shock of watching you guys go through this again! Thinking of you all and hoping for a nice uneventful recovery. X

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  25. Stu, thank you so much for updating. Kirstie has been in my thoughts all day and though emily updated last night that she was in ICU, I hadn't heard about the outcome of the op. No-one knows more than you both what an uphill climb out of transplant is, but you also both know the benefits this will bring to you. Thoughts also with the donor family. What courage they have to think of a stranger at this most difficult of times. Me and Peter wish Kirstie a speedy recovery, and you both many happy, healthy years ahead. Carla x

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  26. Amazing news, when she said she had a secret I hoped it was new lungs, she has raised so much awareness for organ donation. sending you all hugs, xxx

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  27. Thank you for the update Stu, Kirstie was the first thing on my mind this morning. Glad all is well so far and hope you are getting rest as well x

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  28. YAY!! I am so super happy for Kirstie, I don't know her personally but her story has really touched me so much (since watching her documentary). I cried when I read her last post and I'm crying again (happy tears!). I really felt in my heart she would get a new set of lungs. I'm reminded every time I visit her journal to appreciate life more. I also made sure to let all my family know that I want to be an organ donator :) She is so deserving of her gift! I will be sending her lots of positive thoughts for her recovery!!

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  29. Thank you so much Stu for the update. I feel like I know Kirstie and have been thinking about her all the time since she said it was 'a go'. Give her my love please when she'a awake. Hugs, Linda Matic

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  30. Such amazing news! Glad the op went well :D xxx

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  31. Sally and Neil, London11 August 2013 at 01:44

    Thanks for the update Stu. We met Kirstie many years ago on the CF holidays...we were volunteers...and so have been following her journey for a while. She's such an inspiration to all. Thinking of you and family, and of corse her donors family, who have given this amazing gift. Give Kirstie a big hug from us. Lots of love
    Sally and Neil xxxx

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  32. Totally inspiring - see miracles do happen.
    I also am thinkin about the wonderful person who decided to be an organ donor & the pain their family are going through at this time - hopefully they can fnd some peace in the knowledge that their loved has saved someone elses life xx

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  33. Wow what amazing news this is! I met Kirstie last year at the 2nd Chance Ball she organised where a group of us came to support. It was a great evening and she did wonderfully. She is a fantastic inspiration to me and my friends and when I read the blog the other day I really felt for you,her and your families having to face it all again so soon. It was great waking up to this new news ,hoping she makes a speeding recovery and continues in doing all the amazing things she has been doing. Much love to you all and looking forward to Kirsties blog very soon. Xxx

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  34. Awesome news Stu. I have CF ALSO AND FOLLOW Kirstie frantically. Was up the snow in Australia where I live, and every run I did on a slope I thought of her and all the people I had lost to CF including my sister.. all my fb page get the 'shared' posts and all sending prayers and love. I would love to chat to Kirstie when she is better. Her adventurous spirit is similar to mine, with my last adventure to Antartica. Its 750pm here and I have been looking for an update for ages and finally can share this with all from Aussie that follow loyally. Us CF family, we are as loyal as tge day is young. Now I want you to nurse that girlback to health, I think she and I need to chat about adventures. Also I need her to have at my 39 years so she can outdo me!!! Love to you Stu, because without you she wouldnt be able to fight the good fight! And of course huge hugs and love to Kirstie. Xxx

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  35. I am so, so glad that Kirsty has got her second set of lungs and that she has come through the operation ok. Fingers crossed for an uneventful recovery.x

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  36. I am SPEECHLESS! Praise our most wonderful God! I too have CF, I'm 51. I have been blessed beyond measure to still be here and am so grateful to the Lord when I hear stories like this! Coming home last night, Kirstie was so heavy on my
    Heart. I prayed and prayed that the Lord would perform another miracle on her body and for those lungs to come in! Woke at 4:30, I usually look at her blog one of my first things, to see if any update. NEVER expecting to read this!! Please keep us updated!!! Your love for her is precious. You guys make a beautiful couple. I pray she flies through recovery and resumes fulfilling her dreams. I will keep her in the forefront of my mind when I spend my quiet time with God. To Him be the glory!

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  37. With you all the way and following with interest. Haing had a family member who went through a heart and lung transplant twice, we know the amazing transformation these operations make. No one forgets the donor or their family, but what a peaceful emotion it must be to know that a loved one is carrying on in spirit. Good luck to yu all x

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  38. Just shed a tear or 2 reading this. I am a nurse lookin after CF patients. They are adults but they are my kids. :) Kirstie is such an inspiration and even a role model as some of them are like her either already received new shiny lungs or waiting on that amazing gift. Will be praying for Kirstie as she starts her road to recovery. And u Stu, keep doing what you are doing for her cos it obviously contributes to her positive battle against CF. X :)

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  39. Just shed a tear or 2 reading this. I am a nurse lookin after CF patients. They are adults but they are my kids. :) Kirstie is such an inspiration and even a role model as some of them are like her either already received new shiny lungs or waiting on that amazing gift. Will be praying for Kirstie as she starts her road to recovery. And u Stu, keep doing what you are doing for her cos it obviously contributes to her positive battle against CF. X :)

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  40. Hi Stu - thank you for a really lovely update. Kirstie will be proud of you when she wakes up and reads it. It is very moving and a beautiful tribute to the donors. I am so glad that Kirstie has been able to have her op and that it has gone well. I'm thinking of you all and sending my very best wishes. xx

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  41. Glad Kirstie got some new lungs so quickly. Hope recovery is speedy, I'm sure it will be given her determination. Still remember her cheekiness when I was a student nurse on bramble ward years ago! ;-) Thinking of you all, sending good wishes from Spindlewood Close xxx

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  42. Brilliant news, so pleased for you all, I really hope all continues to go well.You don't know me but I was a the Harefield two years ago,for a long time with my husband, and know very well what you went thru then. Please keep us updated, keeo fighting Kirstie xxx

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  43. Thank you Stu. Its been a rollercoaster for me, having followed this blog and Kirstie for a number of years, in part because a close friend has CF, I cannot imagine how hard and scary all of this has been for you.
    I'll continue to keep you in thoughts and prayers x

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  44. Thanks so much for keeping us all updated. I've been following Kirstie since the documentary and just hope this third chance proves wonderful!

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  45. Stu, you have done Kirstie proud with you thoughts put down so eloquently. Hope your girl is soon recovered and living life to the full once again. Her story shows the reality of organ donation.

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  46. SO SO pleased that Kirstie got her lungs, she's a fighter that one and really does deserve a chance to live and continue with her great work.

    Sending all my positive thoughts out to you guys and hope Kirstie has a speedy recovery :)

    Stacie xoxo
    http://stacie-lifeisworththefight.blogspot.co.uk

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  47. Brilliant that all is going well give Kirstie a big kiss and tell her to get better soon sending all our love and best wishes to you all x

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  48. This is brilliant news wishing you all the best and praying like mad that this time it works better than last time and last a lifetime for Kirstie this time well done to the donor families x

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  49. WOOHOO. As soon as I read your update I really did yell out "YEAH" at the top of my CF lungs...I had tears in my eyes (of joy) as I read your update.
    Thank you very much STU for keeping us up to date.
    This is amazing news. I'm sooooooooooo excited for all of you. STu, and all of Kristie's family, YOU are the reason she is doing this. Your support is THE MOST important thing to her. Keep up the AMAZING work...Marc 42 years old CFer from Ottawa, Canada

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  50. So utterly thrilled. You must be the luckiest girl in the world right now xx

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  51. Thanks stu.. Your a natural at blogging.my best friend and I have been thinking of her constantly since we heard about the rejection. When I heard she got lungs we were shocked and so happy. Praying for eternal peace and hope this is the last obstacle you and her have to face. Xxx from her fans in Australia also with lung disease pre transplant. Xxxx

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  52. Thinking of you all so much and keeping everything crossed for Kirstie. She is a truly inspirational girl and so deserves this. Love and hugs x

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  53. I read your blog, Kirstie you are a brave girl, keep your fight up, you are an inspiration to others, May God Bless you.

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  54. So happy for u guys!!! and will contiune to pray!!! I have 3 kids with Cystic Fibrosis!!!

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  55. Kirstie's story has made the Daily Mail:

    http://www.dailymail.co.uk/news/article-2389347/Pole-dancing-teacher-SECOND-double-lung-transplant-body-rejected-previous-pair.html

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  56. Never met you both but been following Kirstie for ages now, thrilled she has got her lungs and as you say huge admiration for the donor family who have made something amazing happen out of their loss GDG x

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  57. Dear Kirstie and Stuart,

    I have been reading this blog for years and enjoyed reading comments. Now I thought I could put my energy together and type a little comment. I am a CFer too, I too received double lung transplant on 27.12.2010 and got to live beautifully up to February this year when I too faced chronic rejection. I hope I have battled against this horrible illness with a fraction of the inspiration and dignity that Kirstie appears to have done. i was relisted myself but i was removed from the list again on 01.08.2013 which was the day when my treatment no longer seeks to give me more time but is palliative. I beg each and every one of the people to sign up for the organ donors registry. I am simply to weak and fragile to have a second attempt, btu there are so many beautiful women and men of all ages in the queue who literally die never getting the chance to get that glimmer of home I got. Its 2am and i sit in my dark hospital room thinking what to write to somebody like Kirstie and her family and there are ltitle words to say as i prepare to let go of my battle against CF. I sincerely hope everything will go well for you Kirstie and you will live many days and weeks perhaps years without problems and that your family will find the strength to cope too whatever comes up. I will leave the address of your blog to my brother and sisters to read after I am gone, I am sure that your story will also give them some comfort. And please take a breath for me too!

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  58. Thank God. I couldn't have read better news this morning. Looking forward to seeing you both back home again.

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  59. Dear Kirstie, you so deserve this wonderful chance again. I know you'll make every second count as you always have. You're in my thoughts so much and wish you a speedy recovery with no more rejection. My best wishes to Stu and your mum (don't suppose they remember me). Lots of love Chris Darrant x

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  60. Yes, and if you didn't update us, you'd get a virtual 'slap' from us! I saw on the Daily Mail that she was getting lungs! Was so glad it's true. Oh, hoping so hard that these will give her many years of joy and time with you.

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  61. I keep folowing...she's looking amazing! here's hoping Kristie goes on from strength to strength! xxx

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  62. in reply to Dani, never give up hope! Look how close Kirstie came to not having her second transplant. I will be hoping for you!

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  63. You two are such an inspirational couple me and my partner wish you all the luck in the world xx

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  64. Wow, such happenings!! I cant believe new lungs came THAT quick, how awesome. I really, really hope everything is going well and your recovery will be easier than the last one.
    Call me a stalker, or a bored/interested CF-er, but I just finished reading your whole blog (yep...) but first time to comment, and I would just so love it for you to be able to live your life again, without any of this continuing crap!

    Lots of good thoughts to you and Stu and your family. GO GIRL!

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  65. Hi Kirsty, you don't know me. I left a message for you previously. I'm so happy you have been blessed with the gift of life for a second time. Wishing you all the best in your recovery. Heavenly Father hears the sincere prayers. Keep up the good fight. Thinking of you, your family and donors family at this time. Kind regards wendy Lingham a heart transplant recipient. x

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  66. Dear Kirstie - so glad everything has gone well so far. Your new lungs could not have gone to anyone more deserving and I know you will make the donor's family so proud, as you must have two years ago. With love Chris Darrant x

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  67. You are as strong and inspiring as your beautiful wife. My son and I are thinking about you, your family, and the donor family as well. Sending happy and healthy thoughts your way xo

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  68. I am praying that things are improving for her...Sending love from Aurora, IL USA

    Cheryl

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  69. Dear Kirstie - so very glad everything is going to plan. I know you'll make your new lungs very proud, as you did two years ago! Take care and with lots of love Chris Darrant

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  70. I am so relieved to hear that Kirstie has received her new lungs! I have followed her journey throughout, as I too was waiting for a transplant at the same time as Kirsty, I received mine last year and am too eternally grateful to my donor!! I have always used kirstie's story as my Inspiration as she has been so strong! Please pass on my best wishes to Kirstie x I will be praying for a speedy recovery x Nicola x

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  71. So happy a set has come in! I too have been following your story and I have CF/god bless you!

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  72. Virtual hugs to you, such wonderful news. We had big weeps in our house when you heard your earlier news and then big happy weeps when you heard this new news!
    Let your light shine Kirsty, so others may have courage to shine too.
    Give a smile for your mum, love from a CF mum xx

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