Why become an organ donor?

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 . . . . .

A sort of brief history of me

So that was how it all began, well not really how it all began, it began when I was born. Here's a brief (or as brief as I can be for someone who likes to talk the hind legs aff a donkey) of my life so far, I'm sure we will go in to detail as we go on :
Born  Nov 1983 to Nettles and Big Sandy
9 months : Diagnosed with Cystic Fibrosis - mum and dad thought the worst
11 years : Ha a great childhood, sure I took meds and got physio three times a day and knew I wasn't exactly like my big blisters (big sisters) but I was fine with that, I was spoilt more and got to eat what I wanted and I liked to fall asleep whilst my dad did my evening physio singing 'Pretty woman' to me in time with his clapping. After he would carry me up the stairs. At 11 I went into hospital for the first proper time to get polyps removed.
13 years : First set of IV's followed by a whole lot of IV's , weight was falling off me, infection was rife and the doctors warned my parents that I was faling down a steep slide that they had no idea how to stop. I spent my birthday in the hospital, I first began doing Nasal gastric feeds (yuck that took me a while to get used to) and my life changed rapidly.
13+ years : I was diagnosed with Diabetes YAY! I say yay because we now had a reason as to why I was so gravely unwell.
TEENAGE YEARS : Not only dealing with crazy hormones, all you buddies are growing boobs (even the boys had bigger ones than you) and hips and I wasn't anywhere near puberty in my body yet I had the hormones to fancy nearly every boy that stood within a metre radius of me. Looking back I'm glad I was an ugly duckling (if you had seen pictures of me before you'd understand that my formative years were much worse than my older years. My sistes teased me calling me cliff hanger - cue a very amusing night of charades for them and tears for me, as my dad tried to hide laugter whilst giving them into trouble) I never got involved with boys.
I do remember CF hitting me like a brick when I was approached by a boy in school who said to me " I heard your not going to live till your 18" BOOM, well FECK YOU TOO!
I got three monthly preventative IV's and regularly was in for antibiotics when I needed them. I continued with the feeding through all my teenage years, I would become the nasal gastric queen.
LATER TEENAGE YEARS : I tried to smoke once, thinking it would instantly make me seem a lot cooler- it didn't I choked I thought better of doing that but my friends like to remind me every so often about that.
I started to drink and tried my hardest to hide it from my parents, they weren't stupid but neither was I a huge drinker. Until the night at Monklands, we may come back to that.
I got accepted into uni at Caledonian to do Fashion with business, great! Clothes making!! NOT, it was all business. I like to blame the fact that clothes making wasnt a huge part of it as to the reason why I dropped out after a year. However, I liked going out too much, I liked to party and I went through a damn crazy time where I didnt take my meds or do anything remotely related to everything I should have been doing for CF.
I call this time my TRULY CRAZY ARE YOU FECKING NUTS DENiAL TiME. I got a job in Miss Selfridge and sometimes showed up for Uni, I partied, I felt great, I began asking myself are the doctors right? Do I really have CF? Maybe all this time 17 FRICKING years they have been wrong, and then I went on  fmily holiday with my sister and her wee one Tamsyn. And I got a cough, and I got ill, and on my return I couldn't push my trolley with my bag on it.
TURNS OUT THE DOCTORS WERE RIGHT -I HAD CF - ha ha ha I was sat down by my CF team with my parents and told by my doctor that if I were to carry on, on this route to self destruction I would most certainly reach that DESTRUCT button much faster than I even though.
So I buckled down, gave up Uni, gave up work, it's pretty amazing what getting told you are going to die can do for you.
I bubbled through life having ups and down health and well being wise and then I met someone and I really wanted to try my hardest, I was still doing feeds, I was still doing physio, I kept all this quiet from him for three months.
We were together for a year and a half before the shit hit the fan, my CF had been declining slowly, low lung function but I was still functional - it's amazing what your body can cope with.
I had a MASSIVE lung collapse in his room one night, I apologised to him that I was going to die right here.
I didn't and again we will delve into this at a later date.
I was put on the tx assesment list, the docs at newcastle told me they didnt know how my body was still functioning with the results my tests had shown. After they told me that, it was like my mind gave up a little, it could no longer hold the fort as well as it had.
I was thankfully put onto the tx waiting list.
During this time I had studied beauty therapy and hairdressing and was now studying Makeup Artistry.
June 2009 - I went to ROckness and was blue, I was on deaths door and I couldn't walk even tiny steps. I had never experienced a total lack in control like this, my body was shutting down. Aware that this was going to be my last festival I stayed all weekend with my friends. I went home to the hospital to be told they didn't think I could live through this one. The palative care team were being called. I never told anyone about that conversation until after my transplant (tx).
Okay dokes 10th Nov 2009 -  Day after my bday and I got a call to say that I had to go to the hospital, they had lungs and I was the standby(means that the lungs were going to someone else but if they were not well I would be next in line), half hour later and I was told I was the reciepient if the lungs were good. And they were.
Nov 11th 2009 I was given thee most amazing gift anyone could ever give, the gift of LIFE and HOPE and POSSIBILITIES where there had been none.
2009- present day I have had such a wonderful time, I got my dream job, met so many wonderful people, I have loved, laughed , danced my heart out, shared the message of transplant and my story to everyone and anyone that will listen. I have also lost my best friend to Cystic Fibrosis but there will be time for all the magical people who are and were part of my life.
And today - I sit in a campsite in France, my partner DOUGIE and I have embarked on a three month holiday around Europe with our doggy Dexter.

And I have chronic rejection, my lungs are slowly being destroyed by the white blood cells in my body (Hey they are only doing their job). Thus the name Chronically Positive. Like I tell everyone, sure I may have had a few rough times of it, but everyone has to deal with the cards they are dealt, I choose to throw those cards as high in the air as I possibly can whilst throwing down some moves on the dance floor, smiling away and singing my heart out. There are only two ways you can live your life, on the Up, or constantly looking down.

Look up to the sky and aim for the stars!! xx

And welcome readers

So in September 2012 I posted this to facebook :
ello everyone, 

It's taken me a while to come to this decision but I wanted to share this with you now as I have had some months to think about it and mull it over. Three months ago I was told the words "You have the beginnings of chronic rejection" also nown as BOS I beleive, and by heck did it floor me.

Blubbering wreck of a usual happy smiley me set in and for the first few days I really struggled. See I dont know about you guys, but those words are the words that mean the end of the line to me. They made me assume the very worst and made me panic that I wasn't ready yet.
How wrong was I?
On investigating, talking, researching and speaking with docs I have found that indeed they do not mean the end of the line. My lung function is still a very nifty 103% and I'm still full of life.
It means I have to be extra diligent but my lungs haven't deteriorated at all. My initial drop happened last February and since I haven't had anything but they only CT scanned me a couple of months ago.
So heres the story so far, I didn't want to tell the TX community as i didn't want pity, I didn't want anyone to think my fight was done and I think thats because I felt it had at FIRST.
But now I am looking at it as a kick up the backside, we are all aware that TX doesn't last forever, but it gives us time to spend with those who matter most doing what we have dreamed of.

And I know I am very fortunate, I am almost three years down the line and have had the most amazing experiences and met the most wonderful people.

I guess I'm posting this because there will be others getting told this news and I want to save them the drama queen or king episode. Chronic rejection like everything else is only a name, its now up to me what I make of it .

To some this isnt an ideal way of finding out and I totally understand that, but if I sit you down and tell you it would only seem more dramatic and I'm way over that crap.

A new chapter has began and I'm excited to see where it will take me.

Thanks guys xxIsn't facebook the bizz just for spilling this kinda melodramatic story line.