Thursday, 3 March 2011


Tonight my feature for ITV westcountry will be aired. It has interviews with my nurse and doctor and what i believe is a frank interview from myself. For those of you who can't tune in, I will put the video on here. I hope it includes everything, I tryed to be as honest as possible and hope i didn't erm and errr to much lol. Let me know what you think if you see it.

I'm also doing a interview with BBC radio Devon in the next couple of weeks.

Health wise, I'm not great, but then I'm not really sure when the last time I had a good day was. I'm always compromising something I planned to do, or cutting back. I have a terrible cold and its left me gasping for breath and having to sleep upright which is not comfortable.

The other day i read something to find out about  Spoons. I explained this theory to my physio and we talked about how I use my spoons, Sometimes I have to decide on weather to shower and then rest or not shower and teach lessons, ect. I find I'm often the sort of person that will trade in spoons just so I can have my few hours of normality teaching. But we did discuss the fact that one day I may not be able to teach at all whether it is just sitting there and would I be able to give that up? Iv been so determined through everything to maintain my lessons and keep my own income, but I know its coming to the fact that maybe I will not be able to do them at all, when my day is only left with a few spoons and perhaps I need to spend them enjoying a few simple things. I hope it won't come to that and that with each deterioration I can hold on to as much of it as possible. Its hard to thing that the busness I took my time and care to build up, is getting smaller and smaller and seems to be slowly closing in on its self. I worry that If i get a transplant that there will be nothing left of the business I took my time to build up and that I will have to start all over again. But then again, post transplant I plan to have a bit of time just for me, where I can enjoy my fiance, who will then be my husband and time with my pup. Catching up on holidays we have missed out and time alone together just enjoying eachothers company rather than having him having to look after me or worry that im gettting to tired.

I sit here under the realisation that my world is dramaticly getting smaller, I feel the deteriation in my illness is just to rapid for me sometimes and feel that if i were to blink to long i would open my eyes and everything will have dissapeared. Its a sad and scary thought, that all you knew and know is changing, that you simply cannot hold on. Me and my lessons is me holding on so tightly and in a way holding on to the world and my life in which i spent so much time to build, to get to where i am. I guess the only way do deal with that is for me to create new goals, new visions, things to buissy myself with, raising awarness, I am the sort of person that likes to feel useful.

Today seems to be a very thoughtful day, I have also been thinking about my second transplant appointment coming up, When I first went I was worried they would view me as to well, they told me i wasn't and im now under the realisation that im not and neither could they think that, but I have a new worry, for me there was always only 2 outcomes I was to well or they'de put me on the list. But I never thought for a second what if something else is wrong, what if I go for these tests on the 14th and they find out some other reason not to put me on the transplant list. This thought has invaded my mind and scared me to the bone. What would I do then? Would i simply have to admit defeat and say CF has won, when there is no way out but to sit and let CF take over my body. I know that without a transplant I will eventually die, but if I wasn't to be put on the list, if that chance was taken away from me. More If the hope was taken away, that I will be saved from this? I don't know how I could deal with that. I know I could go on the transplant list and never recieve a transplant and although that would anger and upset me, I would always have hope, hope that that call would come and that would get me through, even if it never did. But if i wasn't on the list there would be nothing. No hope, no nothing. Just waiting, waiting for the infection that could kill me and the painful deteriation that I know will take my life.


I want to leave you with a picture, me and kia. My puppy Who is the sweetest pup ever and loves to hug, lick and let me know she loves me, she even knows when im not well and trys to help me.


  1. Carol ( March 2011 at 10:40

    I have just watched your story on ITV Westward Kirsty and I wish you all the best for your next hospital appointment and hope you get on the transplant list. You deserve it you must be a great inspiration to a lot of people who watched the programme. My son has had a kidney transplant so we know what it is like to be on a transplant list and we owe the donors family a lot without them my son would not have such a good life as he is now having now. I hope a lot more people after seeing your story register I know not a lot of people understand what it means to give an organ sometimes you have to know someone in a position of wanting one to completely understand but people like you sharing your story must open up some hearts. I love your puppy we have a dog which brings us all a lot of pleasure we got him after my sons transplant and they are inseparable. I wish you all the best for your wedding and I have put your blog in my favourites so I can follow your story. Take very good care love from Carol. So glad you have such a caring Mum and Nan we are very close as a family there is only me, Hubby and son so having a caring family really does help xxxxx

  2. Kirstie if you get your new lungs I have no doubt that after you've spent time just enjoying being with Stu and Kia and doing fun stuff, then you will be able to get extreme pole control back bigger and better than ever! So don't worry about that!

    See ya at the weekend... Girls are looking forward to seeing you and have lots of questions about how you wil get your new lungs! Lol x

  3. Hey Kirstie,
    Just wanted to say I think you are doing a fantastic job for CF awareness! You are definitely making a difference!

    28 wCF

  4. Kirsty my lovely!!! I adore reading ur blog.... But it also makes me really sad..... One thing that I have realised caring for my sick daughter is u have to live for now, and wot is happening today, ur such an inspiration and such an amazing person that wen ur well u can achieve anything out of life that u want to.... But for now u have to concentrate on wot is right for u... I'm sure u have touched many peoples lives with ur awareness and make people think twice how important organ donation is!!!!!
    Keep ur head above water babe it won't b like this forever!!!
    I tell myself that same thing ever day.... Our call will come probably wen we r least expecting it!!