Wednesday, 30 March 2011

Ambassador Kirstie

I had a weird moment yesterday of sitting there and thinking that call could come anytime now, It was a great thought that this nightmare could be over and i could gain my life and independence back. But the phone didn't ring and i know it will be like that most days, just thinking maybe the phone will ring, but it doesn't. But i hope and I'm positive it will, one day. If it doesn't then i hope I'm changing the world, like i always said i would. I hope all my work will mean no one else will have to wait in the uncertainty off transplant and waiting for a call that might never come, I hope one day it will be almost a guarantee that you will get a transplant. That everyone will consider and sign the organ donor register willingly and happily give people the gift of life.

Which brings me on to my happy news that live life and then give life charity which supports organ donation have made me a ambassador for there charity, i quit like the title, it almost sounds regal don't you think? You can call me ambassador Kirstie if you please, I'm waiting for my official robes in the post, i imagine long ones with stars on shoulders??? lol no that's all a bit of a joke, although they will be sending me a t-shirt with the slogan 'I'de give you one' on, as in an organ that is you filthy minded My role is generally what I'm doing already, but i feel like I'm receiving recognition for it and part of a team. So Ill be raising more awareness and hopefully appear on your TV screens even more regularly :-D for those of you who may be sick of my face....tough. he he. I really am happy about this role and feel really humbled that they thought i was doing such a good job, so thank you lltgl and I hope I make you proud.

I'm now on 3 IVs, long lasting morphine, for pain control mostly, but as its also suitable to ease my breathing, which will help me sleep more comfortably. I'm virtually stuck on my oxygen 24/7 apart from when my nose has really had enough and i whip it off in frustration, I don't last long with it off and start to feel uncomfortable quickly. I'm also using my niv (non invasive ventilator) which i usually use for physio,  to have a rest on if I'm struggling, this means it will just give my lungs a bit of a rest when I'm really feeling tired with my breathing. I like the sound of this and I'm glad to have this option, just to rest every now and then when I'm really feeling awful as the simple act of breathing can feel so hard sometimes and that my lungs and muscles around are really not up to doing the massive job of moving theses sacks of crap. My home concentrator is now sorted as is my liquid oxygen.

I still cannot walk anywhere and yesterday I decided enough was enough and i should get a bath, this was like a military operation, my nurses had to sort all my stuff out and take it to the bath room for me, they had to run the bath and get all my washing stuff out the bag for me and then they even offered to stay and help me wash, i had to draw the line here, I'm not against my mum, sis or Stu helping me every now and then, but theres something about nursing staff having to help you wash that feel undignified and embarrassing, its not the fact that your naked, i have no issues with my body and often showered naked at the swimming pool, but it the fact that there helping you wash. It just feels wrong, like every last thing is being taken away from you and i can't quite do that yet. Once I was out of the bath they came in and tidy ed back up and got me back to my room in the wheel chair, this simple task was so draining and i proceeded to have a nap.

Were trying to sort out my home care at the moment, Iv got this big meeting Monday, discussing way they can help me at home, such as physio 3-4 times a week, helping me bath and shower, as in the build up to having a bath and afterward, drying your hair ect, which is all so tiring, washing and cleaning, cooking and any other things i might need doing which we can think of, which will help conserve energy and keep me well.

Well i hope I get home next week, my progress has been slow and I'm only starting to feel a little bit better over a week after restarting IVs, it has been a truly tough one this time and I don't think I will risk coming off IVs again. Its left me rattled to the core and scared that maybe I really won't make it to transplant and I have to do everything to keep myself as well as possible to preserve that chance. I will keep you updated on my progress, thanks for reading.

Yours sincerely
Ambassador Kirstie ;-)


  1. I want one of those t-shirts!! :)

    Congrats on your new Ambassador status Kirstie - long may you fill the role.

    Thinking of you and hope you are home soon x

  2. You can get them here

  3. *Bows*

    Hehe, you deserve it hun you've done a great job! xx

  4. All hail Ambassador Kirstie! I'm thinking you should dye your nasal specs royal purple instead of pink now :D xx

  5. Congrats on your ambassador role hun, you're joining Rachy and Tor right? It will be fun I'm sure. I'm one of the advocates I'm on sabbatical atm but still doing bits on the side until 2012 when I'll be back...welcome to LLTGL :-)

  6. Congrats on the ambassador Kirstie :) And you ARE changing things, I for one signed the register due to seeing you on TV and finding your blog, I had always meant to, just never got round to it. xx

  7. Congratulations ambassador Kirstie, just catching up with your blog. Hope you feel beter than what you did on Suday night wish I could have been there to give you a hug. Hope you do get home next week. I am thinking and praying for you everyday. lots of friendly hugs Rachel xx

  8. Well done Kirstie, ambassador shows just how well you are doing! Lets hope more and more people are signing up to that organ donation! xXx

  9. Just read your blog for the first time Kirstie after Russell's show last week. Your bravery is beyond comprehension and I wish you and your loved ones all the very, very best for the future. I hope you get the transplant you so rightly deserve very soon. I've just signed up on the organ donor register today and told my family of my wishes. At least my family will be able to take great comfort in knowing that someone as deserving as you or even several people will get the gift of life.

    Take care


  10. Congratulations! I'm sure most won't mind seeing you on the TV more often if it's spreading the message :) Your doing a great job!
    Kirst. xx

  11. Carol ( March 2011 at 09:11

    Hi Ambassador Kirsty we hope you are feeling better now and more positive than you did last Sunday. I wish I could have come and given you a cuddle if I had been living near the hospital I would have done. I hope you get that very important phone call very soon we know what it is like waiting for that call (son had Kidney Transplant) and every call makes you feel is this the one. I am glad you have very good family support there is only me, hubby and son and we give each other a lot of support (sometimes hubby finds it hard to chat about things) our son is 45 and has been ill from birth and things are not always easy. We put on brave faces to others but no one knows unless you have been in a situation like us what it is like sometimes. We have our own website our address is if you would like to see our experiences. Take very good care keep positive and most of all keep smiling as much as you can love from Carol email address is if you ever want a chat xxxxxxxx

  12. Congrats on your new role! Looking forward to seeing a picture of you in your new t-shirt! xx

  13. Keep up the good work Kirstie. My mum posted a link to your blog on facebook and, like Susan, I had always meant to sign up but never got round to it. Just done it now :)

  14. Hey, your Blog is so moving. Posted a link to it on my FB. Also saw you on RH good news. I don't really know what to say tbh other than to echo what everyone else has said. Keep smiling and just imagine all the things you will be able to do WHEN you get your transplant. I hope you get it soon. Take care, stay well and don't let the illness win. xxxxxxxxxxxxxxxxx

  15. You'll get the second chance, I'm sure about that, keep the hope, you are amazing! You are doing a great job! We are with you! Kim x

  16. Wow Kirstie, thats fantastic news about the charity... if there is anything I can do please let me know.
    Hope the wedding plans are coming along and if I can help donate anything handmade for your big day let me know.


  17. You are such an inspiration Kirstie!! I saw you on Russell Howard and your story has inspired both myself and my partner register as organ donors! I will continue to follow your story and wish you all the very best for the future! I look forward to seeing the post telling us all you have had the call!! Lots of Love to you Jenna xxx

  18. Kirstie,

    I found your blog when Russell Howard recently talked about it this year (or was it next year?)

    I hope that you get this transplant, and knowing that your having a hard time even breathing has made me become a organ donor. I hope they can give life to 10 people once I move on..

    Keep up with this blog, it should be good being able to get all your feelings out on this website, and people are reading, I promise you that!

    Good Luck,


  19. Kirstie
    You are amazing, that call will come just stay strong which it sounds like you are good at :)
    Ive had a liver transplant and the work you are doing to promote organ donation is out of this world.
    I will definitely be making sure i keep up to date with you and cant wait for the good news that will come very soon

    Lots of good thoughts
    Jon xxx