the update

I dont truly know where to begin, after having my rejection I got pneumonia in March, I was treated in Monklands and wished thy would send me to Gartnavel. But they didn't and my time there was rubbish!!

But I got over the pneumonia and I did the 10k with my two sisters and my wonderful friends Linzi and Fiona. My girl never left my side the whole 6 miles and the end line was emotional to say the least. My crying face and my story was in the papers the nest day which was a great result for bringing awareness. Mum and the girls made amazing banners and dad painted a great sign.

On the sunday night we had a disney princess party for Nicola, she had had such a rough time of it as of late and I wanted to make it special for her so I decked the place out in some pink, got the chocolate fountain up and running and asked everyone to bring sweets and juice. OMG we had so much to eat, we were all n sugar rushes well into the monday. We watched the little mermaid whilst I sat beside Nicola and sang away whilst she laughed and encouraged me.

I gave her a big hug bye bye as we wore our matching robes.

She text me at 2am~(I never got this till the morning) to say what a wonderful time she had had and she felt so lucky to have such people in her life.



Monday came and I worked on my graded unit, getting Susan a friend of a friend done. Tuesday came and I worked on Ge transforming her into a bubblegum beauty.

Wednesday morning came and i left at 5,30am to get to newcastle for my bronch. Would love to say bronch went well but I awoke half way through, totally traumatised and hit out at the poor staff. HAHA!!

I stayed over on ward and met the doc the next day where I apologised. He said it happens though he did state they "gave me a heck of a lot of sedation". I'm just not the sedated type of girl now with these new lungs!

Got home on the thursday afternoon and was about to go buy some stuff for my photoshoot with sara on the friday when I realised I hadn't heard back from Nicola. I phoned her dad and left a message and then thought I woould phone the ward as this really wasn't like her.

From the moment the sister picked up the phone and started speaking I was in no way aware of how drastically my life was about to change.



Nicola was dying, she was leaving us and I wasn't there. Sister said it was best I left her family with her at the moment and in my grief ridden state I agreed. I entered my house again having heard this news whilst sitting in my car and tried to tell dougie the news.

I wasn't just upset I was sooo sooo angry, my feet pounding off the ground was the only way I could convey my anger. I know now what it is like to sob, sob so much that you feel your heart may just burst out, like you feel collapsing in a heap may help to deal with it.

I called my mum and dougie drove me over to mum and dads. Mum said I had to phone peter and ask to go see her even if it meant standing outside the door. Mum phoned and Peter and Marion said I should be there.

Dougie drove me up and I tried so hard to be strong, I didn't want to cry in her presence.

The next day/night was long, I went home about 12am and drove back at 1am. When I first arrived at about 5 Nicola looked up at me and gave me a huge smile. Her brother and kerri were also there.

I'm not going to go into details but I did get to say everything I wanted to, to my best friend. My last words to her were, dont hang on honey, everyone knows you love them, whe your mum and dad and bro come back in you let go. And she did . . . . I had went home for an hour and got a call to say she had passed away.

There are a lot of issues ~I am not happy about surrounding nicola's death but I will not air these on a blog. She knows what they are. . .. . . . .

So life continues, me i have been given the greatest gift ever and my best friend has gone, no longer able to share this experience with me. I miss her greatly, I cry often but generally when noone but Doug is around, and often on my own. I want to speak to her and share my life with her. I want to take her out more, even if it is in a wheelie me and her were two.

And so to the next day - I had already signed myself up to do a speech at night for the CF trust at a ball called the apple ball. I went to see my aunt Sadie and had to go for a sleep on her bed for the whole visit. I got home and got ready for the ball.
The ball was a great night, I tried not to think too much of nicola but I did ask for her strength when it was my time to stand infront of approx 500 people and speak.
I ended my speech with a word on my best friend, and got everyone to toast for her and for Jessica(whom a video had been shoown of her prior to my speech) and to the thousands of others who have lost their fight against CF.

Cut t the next morning and our taxi arrived at 7.30am, DOugie and I were herded through to a college in Edinburgh where I was to take part in the BIG QUESTION. One of todays debates was should organ donation be an opt out system. I'm told now that I did really well, I'm sure I could have said more but I'm happy with what I was able to convey and at the end of the day its more about seeing a person and putting a real face to organ donation.

We arrived home and I went out to Nicolas mum and dads to discuss funeral arrangements. I was so honoured to be asked to sit in the family car and also I was going to be given a rope when it came to lowering her into the ground.

Monday came and I felt unwell, I was feeling sick and unable to eat. I've never lost someone Iloved so much, I didn't know if this was part of grief, so I left it. Tuesday was the same but wednesday came and I was being sick with everything I ate.
My mum took me to the hospital who said I was severly dehydrated and after an xray said I also had another pneumonia. Two weeks in hospital ensued and I wasn't able to go to nicolas funeral.

Maybe it was a blessing, maybe I wouldn't have been able to handle it. Thankfully kerri gave my speech, she read y words out beautifully and I thank her for that. They lowered Nicola into the ground whilst they played our song "for good" by the cast of wicked.

I finally got out of hospital and started to get on with life, I even had a trip down to London and Brighton which was awesome. Then bam I got the chicken pox, in all honesty I had asked the skies above to give me a diversion, I was finding it hard to deal with the loss of Nicola- but chicken pox!!

Back in Gartnavel as the poxies can be rather grim for someone immunosupressed, I only spent a weekend in and it seemed they were going so thats me about up to date.
I'm visiting the hospital today, my cough which arised from the poxies hasn't shifted and Mcgregor my doc warned me that I had to go up for absolutely anything for the next wee while so we make sure I dont get the poxies again.

I'm hoping to drop in some magazines for Tasha- a girl who also as CF andf who was nicolas gartnavel sidekick. She no longer has her blonde headed buddie to speak to so she needs some readiing material :)

Kirsty xx

sicky sick sick

I think I'm breathing fine, in , out, in, out, big breathe in, but is it taking as much air in as before, is my cough after normal. I still have the cold that has been lurking about for the past 7 weeks. Every time it feels like it is shifting it comes back again. But now I'm also suffering from sickness and the dia. it started on saturday night, I had invited my sister round for drinks and the out for a boogie, but I was tired on saturday. I collected her about 7 and we came back here, once I was dressed I had extra energy. So I had about 5 drinks and dougie dropped us off in town. In the bar I had another drink and although I can say I was tipsy I wasn't bad drunk. I had a huge tartan duffle on and I was freezing, when we went to walk to the club I was so cold my sister told me this wasn't normal.
Dougie collected me and my sis and dropped her off. When we pulled up in the drive I had to get dougs to grab a sick bag as I couldn't move without being sick, and thus the night began, sick sick, little sleep, sick sick, shivering, then a temp of 38.4.
I know I should have phoned the hospital or went to A&E but I wanted to believe I had had some reaction to summit or maybe caught a sickness bug. Sunday I took paracetomal and my temp lowered, Dougie and I went into town and we were meant to go for food but even the thought of it was making me nauseaus. As it is doing as I type the word food.
We headed home and I was sick again in the car- thankfully in a bag.
Home and straight to bed, had a temp agaiin which paracetomal sorted and then onto monday I felt better, no temp, but I thought I would spend the day in bed to recouperate. Then at 6pm I got a temp again and dougfie returned home with lucozade and got me paracetomal. I feel so pathetic, I can get out of bed when I have a temp.
I phoned Newcastle and they spoke with a doc who said to go to my GP. I know there are lots of sickness bugs doing the rounds right now.
It's just so weird to feel this shit, it feels just like it did when I had an infection but I feel my breathing is ok. I dont know for sure, my coughing has increased and I seem to be bringing up more. I guess I will see today xxx

Kirsty in wonderland

Ah the joys of rugby!I went through to edinburgh yesterday with my dad, sis and dads double act norrie. They are so funny together with their stories of rugby trips. Anyway it was an ace day, where I met a lot of my dads mates from the rugby who were all asking how I was!!

Its so humbling to think of the amount of people who were hoping for my healthy recoup, its amazing how very lovely people can be, I was blown away with the amount of cards I recieved when I was in hospital.

Was back at mum and dads for about 9pm, I stayed with mum cos DOugs had went away climbing with mates so it was easier and nicer to stay with mum and the dog missi. She is absolutely gorgeous.

Today I went to get my hair done by my good friend Donna's girls. Well girl who is studying hairdressing, I went blonde and I must admit its taking a bit of getting used to. But thats me, I'm growing it now to be long and blonde like it was years ago and with any luck by a years time my swollen moon steroid face will have dropped a bit.

Just back from seeing Alice in Wonderland - Tim Burtons. It was great in the imax but it still doesn't beat my love for the original disney one. It was my favourite when I was little and has been since, when I used to have a bad day cf wise I would stick that movie in. Made me feel little again.

Kirsty xx

I've also had a couple of message from lovely readers of my humble blog saying they appreciated my honesty. I hope it is a little useful for tx and Cf'rs.

On a wee pants note I seem to have what looks like a cold sore on my top lip, though I have never had the cold sore virus before but trust me to have probably found it now ;)

So I'll be phoning newcastle tomorrow.

Ode to my friend

This is a little blog ode to my friend Nicola.

I'm extremely lucky in that I am surrounded by amazing friends, friends who make me laugh so much I almost wee myself and friends who I can share my biggest secrets with, friend who I have the greatest nights out with and those who I can just sit in with and eat lots of goodies.

Then there's Nicola, growing up I never had any intention of having a CF friend. I met a boy when I was 9 in hospital who I befriended. He was older than me and he was also a Cf'r. I found out about two years later that he died. And even though I only spent two weeks as his friend I did feel a big loss. It was my first instance of CF loss.

Then many years later I seen a post on the CF boards, a girl who seemed to be giving up, her friends from school had begun to forget about her as she wasn't able to keep up with their social lives. I ended up contacting her and willing her not to stop treatments, I knew how she felt, the only difference is that I still had my girls around my for support.

We began talking on msn regularly or really many times a day, and having someone who knew exactly how I was feeling and what I was going through was amazing. But it wasn't only that, this girl was lovely, caring and although we didn't have a lot in common, ie she loved west life, I loved RnB but we could talk away for hours.

After months we decided to meet up, we knew it was frowned upon in the Cf community due to cross infection but we knew we both cultured Pseudomonas and we felt even if we only met once it would be worth it to see if we were as close in person as we were talking online.

So we met and the rest is history, Nicola has became the bestest friend I could ever ask for, she has always been a text away and when we were both well it was great to meet up, to go to gigs together and to go out and dance the night away.

Things have carried on for years now and both our health declined, however, I'm sure Nicola will also state I seemed to be the more robust one. SO when transplant was mentioned to me first I was a bit surprised, I knew things were not good but I still thought I had enough in me to last a while longer.

But our nights of dancing away had begun seat dancing and after my lung collapses I was put onto oxygen.

Being put on the tx list showed me even more how amazing my friend was, she knew all the answers for me, as I often shut down when medical jargon is being talked about with docs. I knew when I was ready I could talk to Nicola and she would inform me of the answers to my questions.

Nicolas health took a hit and then I got my tx. One of my first thoughts of my friends was Nicola, how would she feel now I had been given a new opportunity?? I worried so much that o9ur friendship would suffer, I knew she wouldn't feel jealous on purpose but that maybe it wouldn't be helped.

I became wary of the info I gave Nicola from my recoup bed in Newcastle. Then one day I wrote to her saying I didn't want to rub it in. She responded telling me that she was unsure how she would react when I got my tx but that she was so truly happy for me.

I didn't need to hear anymore, I knew I had the greatest friend. . . .

Things are hard for Nicola at the moment and I just want her to know I will always be here for her, the three months post tx when I couldn't meet her were really hard, I missed her laughing and our random chats.

One day Nicola will feel what its like to breath easy and I cant wait to share this new experience with her.

Love you loads honey

Kirsty xx

Crackles, pops and snaps or just crackles

Last week everything got a little much for me, I ended up crying in college. The things that were getting to me :

I had had a cough for 5 weeks and on visitng the gp she said she could hear crackles, so had went to hospital who started me on orals but I could just see myself developing a chest infection.

I have so much work to do for college!! And I really want to complete this year.

My best friend Nicola was having a rough time, feeling down and there was nothing I could do as I didn't want to visit being a booger monster.

And I cried and blamed it on my course work only telling my closet friends in college Kimberly and Donna that it was probably more about the cough and Nic.

Talking about Nicola, I hope she doesn't mind me writing this but she is amazing. I think she is the bravest wee bear I have ever met and she is always there for me. It's completely selfish, I dont want her to feel ill cos I need her. There said it out loud. I need my best friend to laugh at my very bad jokes, which she always does!!

Anyway I visited gartnavel yesterday and they said that yes there were still crackles but that hopefully these would go away with a bit of physio breathing and in time. They suspect its a virus and it is starting to go away.

My lung function was up from Newcastle, I'm now blowing 4litres!! Friggin heck times change and I said to Doc Bicknel that my only hope is that others get the opportunity to feel the big change.

So I'm feeling happier. On sunday Dougie and I went for a 51/2 mile walk and on monday I went for a 41/2 mile walk. I cant run for peanuts but walking is good.

Today Sara came round to help me with my coursework by being my model, above are some pics of todays work. I'm mighty happy with it.

It felt like everything was getting too much but maybe its just getting manageable now. God knows how I did it with very little breath.

Cough cough

I'm not going to back track much, needless to say things have been getting back to normal, however, its a normality where I can breathe. Went to see lady gaga on monday night with nicola and amanda and she was ace. She swore a lot which I appreciated.
On saturday night I was doing a pamper party at my sisters then headed out to meet mark,keifer and amanda and we headed to the polo lounge. LOVE IT!
I walked in with Keifer and some guy coming out the club said"you look beautiful" I laughed and said thanks but then thinking back I think he was talking to Keifer, ha ha ha what a conker!!
We sat upstairs enjoying the music and catching up before mark and keifer left and Amanda and I went to shakeour ass on the dance floor.
Tiesto Adiagio for strings came on and I was crying as I danced. I used to play that song a lot and imagine how I woud dance if I had the energy to dance crazily. It still hits me sometimes, the magnitude of getting these new lungs.
Skip to yesterday and this cold which doesn't seem to be shifting at all. I felt I was hindered in my breathing yersterday so I phoned the gp's and went along today for a check. I felt kinda stupid going along for a cough but I know I have to. The doc could hear some crackles in my lower lobes so she is phoning newcastle to find out what course of action to take.
I'm hoping it will be some oral antibiotics but I have a niggling feeling I may have to take a trip down south. Which is kinda sucky but ofcourse it comes with having such a precious gift.
I'll keep you posted on whats happening. . . . . .

K x

The new year

7^th January 2010-01-07

It’s the new year and yes I haven’t written in some time!! Some time but here goes I’ll fill you in on what been happening. My last instalment Dougie and I ended up in a place called Holy Island and we went for a walk to a nearby castle. I had said it was too far at first but without even trying Dougie makes me feel bad and makes me push myself. So I did and we walked all the way to the castle. We then stopped off for tea and cakes at the same place mum and I had.

I got home on the Monday and since then I’ve been on high steroids. Main bad point being my face blew up. So after escaping the perils of moon face I now look like an extra from a moon pig advert. It’s a very trivial thing but pisses me off no end. Thankfully today I went down to 20mg of steroids so I’m hoping it may begin to go down. Between that and I’m also a little were wolf like.

When I first returned home my stomach was a problem, this time it was up the way, between constantly burping and farting and my tummy being utterly bloated with gas. Doug’s had moved in the day I returned home so not a great start me burping a lot. But as always he was great and rubbed my stomach for me which did help a lot. Over the weeks it has been getting better.

Mum and I went for a clinic appointment two weeks ago, the doc let me know that my tummy should get better and the acid reflux should go but if it doesn’t I may need to go into hospital for some further exploration as to the cause of it which may result in key hole surgery.

Christmas was great, apart from all this food and me trying to control my uncontrollable hunger!!! It really isn’t an easy task when you’re used to eating everything in sight to put on weight. I was spoiled rotten, it was a white Christmas and we had a ball. I was due to go to dougies on the 27^th but he had a cold so I didn’t get there to visit him until the 30^th. It was great to see his family,

Doug’s had told me I wouldn’t get his proper present till after Christmas as it would be about 100 squid cheaper. Unsure how to take that one and all the other folk thought it was terrible but on seeing my present it was worth waiting,. He gave me a bag which looked like a bowling bag. He told me I would know what my main present was once I seen the bag so here I was thinking we were now taking up bowling and he was going to buy me a bowls ball. Thankfully not, it was a slr digital camera bag.

I got him a watch, a unicycle and some other bits.

We headed to his mates Owen in Alyth-about a 2.5hours away for new year. It was just the four of us but I had a really good time, it was the first time I had got drunk. My stomach then decided to bloat up after but I was tipsy I didn’t mind so much, then my sugars went crazy so I stopped drinking after that and tried to control my 30 odd sugar reading.

Owen had awesome lanterns we lit after the bells, it was pretty great actually in total, we had planned to see the first sunrise of 2010 but alas the rest slept in whilst I was wide awake. I think I’ve mentioned the steroids do that.

On the Friday we went for a walk in the snow and it felt brilliant to not have to worry about breathing. Later we went to the cinema to see Sherlock Holmes; it too was great, although I wasn’t sure if I liked it even more as it was my first venture to the cinema. It wasn’t busy so I didn’t worry much. I’m getting better at moving away if I hear someone cough beside me.

So we headed back to Dougies parents and ended up with lots of stuff to take back with us furniture wise. His mum also bought us a new hoover which we desperately needed.

This moving in debacle caused a bit of friction at the beginning, seeing as I am just getting the house how I like it, its weird giving freedom to someone else to put stuff all over the place.

We returned on the Sunday 3^rd and went to mum and dads for a curry. I haven’t tasted very well recently but it seems my taste buds are returning as the curry almost burnt my whole throat off lol.

So that’s us about there, I had to bleach the hair on my cheek, though supposedly it wasn’t very obvious but to me it was!!