Wednesday, 14 August 2013

Recovering well

I have to say I never thought four days after transplant I would be so well, so happy, so mobile.

See my recovery before was after a long decline where all my muscle mass was stripped from me, ecmo ruined my muscles my mind everything. It was a means to an end but a horrible one that got me to the other side in the worst shape possible. I now know more then every that a normal transplant where your in a good muscular state as I was because I had declined quicker this time, don't get me wrong my lungs were really gone, i had only a week or more left, but the muscle was still there and that makes such a difference. I believe in ecmo and think it does it's job well, but I want one day where people don't get that ill they have to go on ecmo, ecmo isn't how transplant should be. People should have this as easy as it comes because it's still hard then. Although I feel rather high on life, love and all the energy people are sending me. Thank you for you messages. Also a continuous thanks to my donors and love to there familys. my thoughts are always with them. Ill leave with a few pics for now and just this short blog. I'm off 02, out of itu, 2 chest drains gone, cycling on the bike for 15 minutes and moving really well. Also planning for home mid next week.
All my love blog readers, remember dum spiro spero = while I breath I hope.





Day I was told I was going to die in a couple of weeks, sharing a precious moment with my nephews, brother and sister in law to be.



Going to theatre.



2 days after.



Love



High spirits




Standing. Itu no 02'



On the bike on the ward. No 02.



Proper pjs and had a nice clean! No 02 and happy.



- Posted using BlogPress from my iPad

41 comments:

  1. It really is amazing how well you're doing Kirstie and I am So unbelievably pleased for you!!! Long may it continue!

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

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    1. Well done Kirstie, Lots of love and prayers from Devon. So pleased you're making such good recovery. Love to you and your family xxx

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  2. Fab to see you looking so well this time...what a difference not being on ecmo makes!! I hope your recovery continues just as smothly my dear! xxx

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  3. Fantastic, just fantastic. You are amazing! I am so, so glad for you and your loved ones, and I shall say a prayer of thanks to your donor & their family.

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  4. as a father of a 4 year old with CF I and my family find you and your blog fantastic & inspiring! Brilliant pics, and well done for your bravery.

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  5. Fantastic news Kirstie!! You have done amazing!!!so very proud of you!! Can not believe you are doing 15 mins on the bike 4 days post transplant, and can not believe you are already planning for home!! Absolutely brilliant, I am so happy for you and your family!! Best wishes for the future and hope all goes great this time x you deserve it xxx Nicola x 12 months post transplant x

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  6. Your a truely amazing woman who always seems to have high spirits no matter what life is throwing at you. Highly inspirational. Hope you continue to thrive and are home soon. Best wishes xxx

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  7. So so happy for you. xxxxxxxxxxxxxxxxx From Emma Reynolds

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  8. Wow wow wow, all this is unbelievable!!! YOU are amazing! You make me believe in miracle! Thank you for inspiring me! So happy you have such a wonderful recovery!

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  9. Amazing Kirstie, so pleased for you and your family, you look so well! Best wishes xxx

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  10. So glad to see you doing well and looking as gorgeous as ever!

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  11. So happy that you're doing so well.....amazing girl...I wish the world knew about your journey xxxx

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  12. You are absolutely amazing an inspiration to everyone. Have they sorted out you gastro problems. Continue to improve so you can get home to Tia. xxx :)

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  13. You truly are one amazing lady. So glad to hear everythings going well. you so deserve it. take care and best wishes xxx

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  14. Fabulous! We hope your recovery is speedy & healthy. Much love to you & yours. Xxx

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  15. Hi Kirstie your truly amazing young woman im so happy your doing well..hugs to u and your family and not to mention your wonderful husband... IM a young woman who needs a double lung transplant although i don't have cf i had an op that went wrong and left me in coma and on ecmo for quite some time i had a lot of my muscles waste away so i needed to learn how to walk again ect... IM now so scared of the thought of the transplant i don't have the best quality of life but i get by and im happy... Just wish i was as brave as you. Take care and good luck babe xx

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  16. So SO pleased to read this blog post. You deserve to have many years with these lungs. You are such a hard worker and an inspiration to so many you don't even know. Enjoy!!!

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  17. So great to read this and see you are doing so well! And I was so happy to hear you got new lungs! Hope your recovery continues to be speedy and hope these lungs last you many, many, many years to come! xo

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  18. I'm in tears! So so happy! I was telling my husband just now about you and I couldn't stop the tears from falling. Thank you for sharing your journey with us!

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  19. Smiling big time to see you do so well, good things happen to good people :) May you always have reason to smile :)

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  20. Simply amazing! Just found out! Sending you healing vibes from Toronto Canada!

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  21. I'm so pleased to hear of your progress Kirstie! I had a kidney transplant in March 2011 and to me the whole transplant thing was quite a smooth (although painful) process. The hospital decided to give me a preemptive transplant - before I needed dialysis and before I was too unwell. I'm so glad to hear you have now experienced this too, although being told you have weeks to live can't be the best on emotions and mental state.
    I wish you well and will continue to follow you on here, facebook and Instagram (rosettafaery).
    Love to you, Stu and everyone else. :)

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  22. Best news ever! God is so faithful! I will continue to keep you in prayer. God bless you and your beautiful family.

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  23. Its 17 years since my double lung transplant. Its a long hard fight. Just back from 2 weeks holiday in Spain. Swimming, snorkeling and having fun. The fight is worth it. Keep fighting.

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  24. Hi Kirstie,

    You are truly an inspiration to me. I am a CFer 28 years old. Your story has touched many people. I even blogged about you on my own blog page. It's all about organ donation the myths and the facts. Thank you for inspiring me to write this. I wish you nothing but the best. If anyone wants to read the post here it is.

    http://livingmydreamswithcf.blogspot.com/2013/08/are-you-organ-donor-myths-and-facts.html

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    1. Hi, I am 52. Have cf , had a double lung transplant 17 years ago. Am now retired, health is not bad and does not stop me doing anything. Spain on holiday, swimming, snorkeling, having fun. Based in Shropshire visit transplant clinic every 3 months but loving being alive. Mike.

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    2. Wow 17 years... I don't know what to say now.. Im a young ish woman although i don't have cf i do need a double lung transplant and to be honest with u im really scared.. U have just giving me some hope for the future wow 17years and here's to many more.. Good luck mike xx

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  25. glad you are recovering!!!! you are so brave, so happy to read your blog this morning!! I keep it in my bookmarks ;)

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  26. So Happy your doing so well totally inspirational!!! One very special lady!!! Difficult journey....wonderful outcome!!

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  27. I've just read your blog from the very start. It had me smiling and crying. You really are inspirational and I wish you all the best with your new precious set of lungs. Xxx

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  28. Wow what a recovery! So pleased it is going well.

    You make a good point about the physical condition people are in when they receive transplant. It should not be the case that they have to wait so that they have deteriorated so much physically. I am sure outcomes would be better if transplants were done sooner. I guess it comes down to availability.

    Thoughts to Stu as he has been on a rollercoaster the last couple of yrs. I look forward to reading about your achievements you are so driven! I hope Stu can keep up!

    Dave

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  29. Absolutely Wonderful.

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  30. God Bless you and may he keep showering you with miracles. You are a strong brave young woman and truly an inspiration to all. I wish you a speedy recovery and many yrs of dreams fulfilled and days filled with joy!

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  31. You are such an insperational women

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  32. Kirstie you're a legend. I truly believe that your faith and hunger for life and love brought you through. You saw the good outcome and made it come to fruition. Miracles do happen! I'm 31 w/CF and I know when my time comes for TX I will think of you and that will get me through.

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  33. I just can't imagine what an emotional rollercoaster you and your family must have been through the past week. With everything happening so quickly your head must still be spinning.

    Since seeing Love On The Transplant List I've checked your blog from time to time to see how you and Stu have been doing but last week was the first time in a while and I was gutted to hear about your struggle with chronic rejection after everything you accomplished last year. So glad that you got your second transplant so quick after being listed, I'd imagine a longer wait would have been unbearable. I think the universe was definitely working to make things right for you.

    It's great to see you are making such a rapid recovery this time and here's hoping you'll be back to full fitness and doing all the things you love to do very soon.

    Just don't forget to make time to put yourselves first for a bit though - you and Stu have been through so much and been so strong you deserve to.

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  34. so glad to hear you are doing so well and getting stronger and stronger you deserve all the good things in life xxxx

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  35. Aww your just amazing u have truly inspired me and so many with ur strength i wish you all the best with your recovery sending u love and happy thoughts to you Kirstie all the way from Australia xx

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  36. I knew you could do it Kirstie! So so pleased to see you looking so well, you have such a determined and positive attitude and you really deserve to have this new chance of good health to enjoy life. Also thinking of the donor and family (as I'm sure you are too).

    xx

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  37. Seeing you in "Love on the Transplant List" is the reason I signed up to become an organ donor. I literally went and did it as soon as the credits started rolling. Thank you for telling your story and hope you recover well from this last transplant and these lungs stick! :) xxxx

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