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 people...lol. 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 ;-)