Why become an organ donor?

You know what ? Life isn't fair

“I have cystic Fibrosis”

“Oh I’m really sorry about that”

“ Oh don’t be, you didn’t make it”

I’m not gonna lie, sometimes I use CF for sympathy –usually with dougie when he wants me to go a big walk, or cycle or em make tea or ha ha ha he never buys it.

Here is how I like to see it . . .

I was in a great job, I was in a great place in my life, I have wonderful folk around me, but I have left it all given in my notice etc to come on this trip – Big wows 3 months that’s not long I hear you say. . . .

Well actually I don’t look for change too often, I like the way things are, but I also have been given a very double edged gift from birth.

The gift being -  I always knew time was precious, I never left argument’s un solved,  I forgive easily and though folk say never forget those who do you wrong – I do. The way I see it, I don’t have time for stupidity, stupidity being catty fights, stupidity being worried about the small things, stupidity being not grabbing life by the horns and doing the best bull dancing you can do.

Don’t get me wrong, sometimes I do divulge in stupidity, but I’m often reminded by something that I don’t have the time.

None of us truly have the time . . .. . . but I am fortunate that I am aware of my time, I don’t know when it will run out, or when it will become very obvious that the things I want to do are being taken away from me slowly or quickly ,but I am aware that this TIME isn’t infinite.

At the moment I have a couple of people within my life that are going through hell, no need to name names, but if ever there was a truer word spoken it would be Kate Bush’s “Running up that hill”, knowing only too well what end stage lungs are giving up the fucking ghost is like I wish I was able to give them some rest bite, to share in their struggle, to hold them up for a while and give them the opportunity to walk without thinking about every single bloody breath.

I never felt too much guilt after tx and I don’t know if that’s a good thing or a bad thing? I felt guilt when Nicola died but now I am feeling a whole lot of guilt – a whole lot of why me’s? A whole lot of what the fuck is happening.

I sometimes wish I had religion to fall into, to whole heartedly believe that god has a plan for the people I care so much about, but I don’t. I’m spiritual, I believe we are not finished when we pass from this body but I don’t have any belief after that.

I struggle to believe in a higher power who would allow this world to go to the pits, who would allow babies being born so ill, who would allow people to suffer so incredibly badly.

I know a number of you will strongly disagree, there is a GOD, he does this to teach us, to let us learn, to be better people. . . . .whatever . . .

I’m just jealous that I can’t have those feelings, those definite thoughts and beliefs.

Just after being listed for tx, when I think it truly sank in the situation I was in, I awoke one night in Dougies bed and was completely inconsolable, I sobbed my heart out for my family, for my friends and loved ones and more importantly and selfishly for myself.

I want to be able to say something to reduce the anxiety, the pain, the horrifying thoughts that dominate their minds,  but I don’t have any words except I know how it feels. And what can they words do?

This is a depressingly sad post but more often than not, this is the life for CF, for lung disease and for dealing with an illness that you know most probably will kill you.

Ah pish . . . . .who’s got a funny story to share???

I wish I wish

“I wish I was a little bit taller, I wish I was a bawler

I wish I had a girl if I did I would call her”#

There are a lot of things I’ve done wrong in life, or should I say I haven’t done right. Life is full of mistakes but the real lessons are learnt with mistakes.

I used to be a dweller, if something went wrong, If I hadn’t made a wise decision , if my actions had scuppered my plans I blamed myself, I would dwell on it, I would go over and over it in my head. I used to be so bad at decisions I was like the dice man and I would make decisions based on coin flips.

Maybe it was based on the fact that I had to make decisions every single day of my life, that were INDEED LIFE SAVING. If I decided not to take my meds I knew there was only one way to go.

 I type this because generally, nowadays I don`t dwell, if I do something wrong I try and right it, if I hurt someone I say sorry, I try and learn from my mistakes.

However, there is one BIG, HUGE, GIGANTIC series of events that I will never not dwell over.

 In November 2009 I received the second chance of life. The hope, the wonder and the opportunity within those first few days(even hooked up to a machine and tubes, and what not) was so overwhelmingly amazing.

But then I would think of my best friend, my best friend Nicola (who also had CF ) was  battling a cyst within her lung which kept being infected and every time they tried to treat it, it would fight back with vengeance ,I worried about how she would react? Could she really be happy? Would I be able to be truly happy if the shoe were on the other foot? Even though everyone who knew Nicola would tell you what a wonderfully beautiful soul she had, I still wasn’t sure how my chance would affect us.

I remember calling Nicola from my hospital bed around day 4. I had been struggling so much about what to say, how could I say how it felt? How could I word it so it wasn’t so amazing sounding, so she didn’t feel like she was missing something wonderful and magical?

 My nerves were a bit crazy on account of the drugs, the adrenalin, and the lack of sleep I had , Nicola had been my best friend for over 3 years, she had been through everything with me, the usual girly stuff;  break up’s, fallouts with friends , dating disaster stories, but she had also been through my lowest points, she never judged, she never cast up feelings I had shared, she never got inpatient with my incessant talking, she had been my rock and she was the more fragile one of the two of us.

So I picked out her name in my phone and called and as soon as I heard her wee voice I knew we were ok, she said she hadn’t been sure how she would react, she worried she would be jealous, or angry it wasn’t her time but the realisty had been happiness. She was so happy her friend had been given a second chance.

We laughed at how high my voice had become since all my old lung junk was away. She asked me how it felt ? She was so happy for me, she was my best friend, she was my soul mate.

From the November onwards I couldn’t go and see Nicola, she wasn’t well, I wasn’t even allowed out in public until 3 months after tx as my immune system was so dampened to stop my body rejecting my lungs, but on the fourth month I wanted to see her so much.

 I know lots of people would say I was risking this amazing gift I had been given and yes it’s true, but I also knew my friend needed me, and I needed her just as much.

We never had really cuddled and tried to limit touching (even sitting near each other) knowing that it would risk cross infection even before tx. We used to blow kisses to each other and I would often cuddle her mum and ask her to pass it on.

So . . . . .there will be much more time for me to share all our stories but here is where my biggest regret lies.

MY life flourished, I was at College, I had final graded unit coursework due. I didn’t get to see Nicola as much as I should have. In hind sight I think I was truly in denial . . .

By the time the cyst arrived we would later find out that it was too late for her to be assessed. She wasn’t told this though and if she was she never shared it, looking back now I remember us laughing at my fat steroid face and me telling her I would have my revenge when she got her transplant.

My biggest regret in life is not being there as often as I could have, is not seeing how gravely ill my best friend was, is believing my heart when it told me that she was going to be ok, and not listening to my head when I spent nights crying my eyes out, sobbing as I didn’t know what was going to happen to my friend.

See she was stuck in the hospital all the time, my hospital too, I would sneak up if I thought none of our doctors would be around. One of my latter memories was Nicola and I sitting until after 10pm(way after visiting hours) watching Cloudy with a chance of meatballs because the main character reminded her of her twin brother.

I would get Dougie to run up to the ward during the day with sweeties and I would get a wee thank you message.

I had to giggle writing this remembering that I went and bought an Edward Cullen cut out (lifesize) with a heart helium balloon and took it up to her room. She loved twilight and was a team Edward. She laughed through her oxygen as I told her that although I couldn’t be there Edward would be watching.

She later confessed she had to get him taken home as he kept scaring the nurses.

The week running up to her birthday in May, I was so chocablock, I was completing my graded unit work, I was trying to go to college and I had a 10k coming up. On the Sunday the day of the 10k I got round the run and rushed home to get my house ready for a Disney themed party for Nicolas birthday.

Pink pink pink, sweeties, chocolate fountain, some new Disney DVD’s, and more sweets with balloons and happy birthday banners.

We had an awesome night . . . . pictures I will treasure, specially the one of me holding the candle close to Nicola and her oxygen . . . . .FLAMMABLE MUCH???

That would turn out to be my last moment with Nicola, as we wore our matching hello Kitty dressing gowns (she got us them for Xmas).

 I had to go down to Newcastle for a Bronch and I knew on the Wednesday night Nicola hadn’t been well. It had been a rough night but she played it down well. . . . . .

I returned back and on the Friday morning I realised I hadn’t heard from her . . . I text her, I text her mum and I got a phonecall from her dad. I had just sat in my car in the driveway ready to go out and buy stuff for my graded unit when the words from her dad felt like  .. .  I cant even say my heart broke, or it had been ripped out, or I had been floored. . . . . .there are no words I can use to fully describe the devastation and hurt and sadness , and anger I felt as if I had been sucked into a vortex, that ear rushing noise of nothing, so loud in your head you cant shut it up,

 Nicolas doctor had told her family she was dying . . . . . .. .  . . .

I walked back into my house, Dougie hugged me as I stood in my kitchen tears streaming down my face, a mixture of wanting to be sick, wanting to scream, wanting to fall down and curl into a ball and not raise my head until this horrible, nasty real feeling dream was finished. Instead I stamped my feet with all my might, I could only describe it as a tantrum.

I still whole heartedly believe that I would have swapped my life for Nicolas if I could have, if it were in my capacity to do such a thing I would have.

For those who think that Kirsty Geddes, she’s a lovely girl, she’s so nice and bubbly and friendly and laughs and . . . .well I’m not a patch on what she was.

I’ll maybe share one day the coming days, one thing I will share is that my mum drove me to the hospital, the walk from the entrance up to her room was horrible, knowing these were going to be my final hours/ days with my best friend. Knowing I could say nothing to make it easier for her family, knowing I wouldn’t have our stupid chats or play rockband ever again, or share our passion for TGI’s and Chinese food, knowing I would no longer have my confident, my rock, my angel to speak to and text every morning and afternoon and evening, I trembled as I walked into the ward, the nurses giving me a wee cuddle and me seeing the tears in their eyes. But then that disappeared, I walked into Nicolas room and her mum was sitting holding her hand and the oxygen was up so high it was all I could really hear, and her eyes were closed and every breath taken was a gasp, a struggle,  her mum said ‘here’s Kirsty Nicola’ and with what I can imagine to be all her energy she raised her head to me and gave me THEEE BIGGEST CHEESER EVER( I almost forgot that).

I was so fortunate to share the final day with my best friend and her family,  they very generously let me sit at her bedside with them, I got to hold her hand and let her know how very important she was to me, how she had saved me many a times and how she would always be my inspiration. It all came out so easy, I needn’t have worried I wouldn’t have known what to say, we took shifts trying to nap.  

I will also always be thankful to the staff at ward 6C, over the years they too knew Nicola so well, she was a little shining light to them too.

I may describe her as a bit of an angel but truly she was to me and many others.

We made a pact years ago whoever passed first the other MUST make sure they look ok, so if makeup was needed or hair fixing then it were to be done. PACT. When I went to see Nicola after she had passed away in the room in the hospital, her mum (her best friend,  her carer, her confident and no1 gossip buddy) said to me ‘ you do what you need to do Kirsty’ , I worried about seeing her lying there but I needn’t have. She was beautiful and I didn’t worry about kissing her head and her hand and giving her a proper cuddle.

“I’ve heard it said that people come into our lives for a reason bringing something we should learn and we are led to those who help us most to grow if we let them and we help them in return

Now I don’t know if I believe that’s true but I know I’m who I am today because I knew you”

I wasn’t beside Nicola when she passed, but she was serene, she was rested, she wasn’t in any pain the last time I seen her.

My last words to Nicola is that I would always love her, she was the bestest friend anyone could ever hope for and she will remain so until the day I die. . . . .

Thelma and Louise didn’t have a patch on us eh babe!?

My biggest regret : Not dropping everything and spending the last few months by the side of my best friend . . . . .. if I could go back I’d drop it in a heartbeat, I’d be there, I’d camp out in your room with you, I’d take some of the work off of your parents shoulders and I’d be there for you like you were for me . . . . .