Wednesday, 1 June 2011

Past your sell by writing date

Are you past your sell by writing date? I seem to be leaving it to late to blog and the words have disappeared. I have a few fabulously worded blogs in my head but I have left it to late and the words don't flow on to paper in the right order. Usually I am just to tired at the time, to physically exhausted to try and put my thoughts to paper. Thoughts that I want to get out there, but just never seem to be in the right frame of mind to write them.

My Dad and his wife Nicky came down this weekend, he had to have a suit fitting for the wedding and therefore an opportune time to spend time together. Its only when I see my Dad I realise just how much I miss him and Nicky. My relationship with my Dad has not always been the best, I spent 4 years being stubborn and not talking to him. It feels so silly now 4 years wasted when I might not have another 4 years to waste. It was defiantly both our faults though, but it doesn't make it any easier. It upsets me quite alot when I think how close I am with my Mum and Nan, I have such an amazing relationship with them, they are my support system and they know me inside and out and I am so blessed to have had such a fantastic relationship with them, but yet Iv had such a distanced relationship from my brother Chris, my Dad and Nicky. I just want more time with them and I think that will be my biggest regret in life if I don't get this transplant, because I do get on with them so well, it unreal and I love them sooo much. It makes me wonder how this distance was ever really there, but I do know why, something I can't talk about on this blog as its such a horrible family trauma, Its not for me to share. But I blame that for any rifts and faults in my family and like I say I love them so much I just hope I get more moments like the weekend, simple, nothing ott, just about being together and sharing each others company. I think that about somes up what I wanted to say about them and I hope if any of my family read this which I'm sure they will, I want them to know just how much I love and care for them.

Today I had clinic, I am very tired, my lungs are going down hill, shere exhaustion seems to haunt me every corner, but I can't seem to nap, not that Iv had much chance. I did lung function today it was its lowest recorded point 16% fev1 and 17% fvc I know Iv had lower, probably only 10% before, but I was simply to ill to do lung function then. Seeing the figure, its scary, I can simply look at them and wonder how I am even breathing, but I know I will carry on breathing with these mouse sized puffer.

Something I was thinking about this morning in the bath, my legacy, I think we all want to think we will leave something behind and I remember when I read Eva's blog, she was a bright light for many CF sufferers and she had a double lung transplant but suffered chronic rejection and unfortunately died, Eva Knew she was dying in the weeks up to her death and she wrote and talked of leaving a legacy. She did. I hope I can leave a legacy like her and in so many ways I draw inspiration from her and how she created such a whirl wind in her path. Will people remember me? Will I be forgotten easily? I just want to know Iv changed the world in some small way, leave a lung shaped stamp on this world. To read Eva's blog please click here. So on the subject of legacy and changing the world, I had  sign today that I was, a girl I use to travel on the school bus with is now school teacher and she talked about me during a R.E class of year 7, she has talked about me and organ donation and she also talked about me in terms of my perception of god and dealing my own mortality here is what I wrote

Well Interesting question really, I would be happy to answer. I think as a child CF I couldn't understand that god would do something like this to someone so I shunned religion and buried the Idea that god existed, because how could anyone suffer so much if theres a God, right? But on growing up and becoming more mature, I was always interested in religion and found each individual religion interesting and wondered what one was true. I think now I'm as ill as i am and I have to face my mortality, I find it extremely hard to comprehend that there may not be a God, that there is nothing waiting for me on the other side, I won't Breath easy, a phrase people use with CF when some one with it dies. Breath easy, Iv had so many friends die with CF, Its a great comfort to me that they are now breathing easy, the suffering is gone. I have to have faith that there is something out there, a place of peace. I know that if I don't get this transplant then ill defiantly be finding out.

I received letters and card from them today, I liked to think that that means I have implemented a small change on the young lives and that they understand what a illness like CF is, how important organ donation and how faith is important, not any specific faith perhaps but just believing that something is out there for us all a place of peace because I think it can be desperately lonely in times of need thinking there is nothing.

So I think that is it, a long and thoughtful blog indeed.


  1. Long and thoughtful and very emotional. Had a little tear reading this, you still amaze me with the way you are dealing with everything thats being thrown at you. You will leave an amazing legacy, but not for a very long time as I truly believe your call will come. xxxxxxxx

  2. ((Kirstie)) I am truly lost for words but I didn't want to read and not comment.
    Thinking of you hun, much love xxxx

  3. Kirstie, keep going hun you give me hope for an unsure future, its so hard being the parent as we are supposed to be able to help and protect you, though not from CF it seems, you are already an inspiration GO GIRLXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

  4. I have not left a message for you in a bit but have been reading your blog. Just want to say that this one has blown my heart away. I am always thinking about you and I will never forget you. When I was in clinic last week I said to my doc ur doc that I really wish I could do something for you so thats how much I care. I am sitting tight hoping that you will get a new set of lungs so you can enjoy being the wonderful person that you are. Keep going Kirstie, I am sending you all the energy I can to you so you can add it to your energy level (I hope that makes sense) Luv hugs and kisses xxxxx