Frick sake its almost xmas!!

Again I should really update this better but here goes whats been happening . . . . The ball went amazingly, we raised over £12000, I did a radio piece for real radio regarding organ donation as did my unsuspecting sister who I heard so many times, I did a piece for the daily record about Julie and I. I nominated her as my unsung hero and we won lots of goodies and got a double centre page which was fantastic and really helped highlight organ donation. I also did some work for the scottish organ donation team and was featured on STV news. And this week Victoria and I are heading into her work to bring some christmas cheer and raise awareness for organ donation.

I passed my one year anniversary which was spent with my family and toasting my organ donor and family. But I also had a joint bday and transplantaversay night.
Didn't quite work to plan, after a couple of drinks I got very upset and this was the rest of the night- so in future my friend Kimberley came up with the plan that I do somthing adrenalin filled ie, go karting, zorbing, bungee jumping la la la to mark the year. Much better!!

I had an amazing night out with one of my oldest friends mark last thursday - wayyyyy too much booze and drunken dancing which eneded in my elbow hurting again - note that I broke my elbow two weeks ago following me doing some amazing MC hammer style dancing in the ABC rather drunkenly falling but giving my big sister and I the best laugh in years!!

I'm attending a CF night on Saturday which my dad has organised for Lochinch Rugby club, where I will be singing the foo fighters "my hero". I sang this at the masquerade ball in October and it went down rather well.

In between everything else I am now trying to establish myself in hair and beauty and trying to raise my profile. I met a great photographer who works for the sun - i'm doing a piece for them also. And he is wanting to work on some high end editorial style pieces.

A busy life I lead.

Never forgotten nubby.

Kirsty xx

And so onto this life I go. . . . .

Nicola enters my life every day, be it a song, be it a picture, be it a cartoon I see or summit that I know she would love there isn't a day that goes by or probably a couple of hours that go by without thinking of my friend.

I'm not going to say I'm doing this for the both of us cos if I had one ounce of her strength I would probably be travelling the world by now, but I do feel I owe her so very much and I know that she is watching sometimes.

The other week I was looking through my favourite pictures of her to give a copy to her mum. I sat in my living room and got rather upset looking at them whilst listening to some music and then I got nervous about seeing her mum- dont ask me why I think its because it had been a while but then from nowhere a little pink globe I have on my tv which contains a fairy and glitter went off. It's a wind up music thing but never ever has it gone off and it did for about 3 seconds. I looked up from the computer and I smiled and said "Thankyou".

I dont think you realise how much someone is in your life until they are gone. Nicola and I only seen each other about once a week or once a fortnight but we spoke in texts every single day, just a littl hello, a little are you feeling shit today too?, a little bitch at something on tv. But I got through my worst days with this friendship.

She is so very missed. . . . . . . . but they say life goes on and it is.

I'm back at college, makeup artistry is going great. Have already taken part in three fashion shows, one being for the Rainbow Room, have been doing makeup on an up and coming star called Carrie Mac and hopefully going to get a gig working on Calamity Jane in the Kings theatre.

We're also arranging this amazing ball, Victoria, Jac and I and I am really excited as it's only a few weeks away. Between that and I have the LLTGL advocate weekend with Jac and all my fellow amazing LLTGL advocates for a team building and a 'getting to know you' King and I stylee time. Also I have Karen(one of my oldest and dearest friends) hen night then wedding to think of. Then my birthday and transplantversary.

I am a busy girl and really should get more organised.

Inbetween I have been colouring my hair lots and now am bleach blonde. Unfort my hair got really thin 9 months post transplant, and I cutt it all off. It didnt grow in any thicker so me being the exhibitionist that I am I decided to colour it up.

Lastly today I was at clinic and it's been the best one yet, I have a cold at the moment. But my lung function is now at 95% and my Xray is clean as a whistle. Best clinic appointment yet.

Today is a good day, I wish I could have shared it with her xxx

Pictures of the past 6 weeks

Dougie and I at the apple ball

Me and Nicola on her disney night - the sunday before she died

After the 10k speed walk 1hr 35mins

before the 10k speed walk

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!!

Going outside again

Saturday 12^th December

I didn’t sleep too well last night after having some awesome sleeps, mainly up peeing through the night, but it was probably more due to me being fit for bursting food wise. And it’s a bit chillier on this ward to the other.

I got my levels done this morning, so they can check my new levels of anti rejection.

I awoke this morning and already had dread about trying to take my pills, and again when I tried to take the omeprazole I was sick again. SO gross!! It reminds me of when I was younger and mum and dad having to break up my creon into yoghurts. EURGH!

Anyway I retook my antirejection and thankfully hadn’t taken my predisonale yet so they were safe. I got myself ready and did my makeup and felt a bit more alive. Proff Corr came along and he said I could stop taking the magnesium which is great as that’s one less drug which makes me gag to worry about and at home they have different ones at home for me to take.

SO I’m typing this and waiting for Doug’s to arrive though I told him to take his time, he was knackered yesterday. We’re going to go out for the day, not really caring where but to get out even in the car will be nice. Doc just said stay away from bogey nosed kids. But we’ll go somewhere quiet. I really want to go to the deli along the road for some yummy food.

Friday 11^th December

Dad came up early to see the docs before he was headed home. He has gigs tonight and I’m so thankful that he is in the position that he can come and stay with me, I hope he realises how much him being with me and supporting me means to me. Just knowing that someone is nearby in case things go hay wire is comforting. Although I tell him the opposite so that he will go to work, I know that he will head back asap if I needed him to.

I was sick this morning trying to take my meds, had to retake my anti rejection drugs, the magnesium makes me gag and brought up all the others which is a pain as I absolutely hate being sick. Of course no one likes it but I would rather get jagged than be sick.

Jim the doctor came in and said I would be sent for lung function and x-ray today to check my progress and Professor Corrigan said all set for leaving on Monday if all went well with my levels as he has changed my anti rejection drugs on account that I’m dark haired and probably will grow some extra hair on the ciclosporin. I said I didn’t mind, I mean gosh I have new lungs, I can breathe but he replied with”Oh in time you’ll mind, you’re a young woman”. Later I had a little look closely at my face and seen that indeed I seem to be growing a nice little mossy. LOL! So it’s probably a very good thing Proff Corr knows his shizzle.

Dad left around 11am and then I was transferred to Ward 26, I was a bit wary at first as I’ve always been in ward27a here but ward 27a is a high dependency unit and I don’t need high dependency. I have my own cubicle in 26 too.

I had a shower and it felt amazing, I blow dried my hair, shaved my legs –nicely cutting them in the process and got myself moisturised up. It’s the first time I have properly had a good nourishing wash and pamper since last week. I did have a shower on Monday morning but I was feeling terrible that Dougie had to blow dry my hair.

Doug’s was coming to see me this weekend as usual the pet that he is, but he was out last night so he went for a nap before hand and ended up arriving about 9.30pm. The nurses didn’t mind, I think because I am mainly self medicating and we were in a room so we sat and cuddled for an hour plus and I showed him my sporting new mossie.

I’m going to be on high level steroids for the next five weeks, but I need to curb my eating. 60mgs of steroids gives you an almost uncontrollable hunger; I keep eating so much I feel sick. Yesterday funnily enough was no different. So tomorrow will be a different day. No binge eating.

Rejection or Infection which way will it go??

Tuesday 8^th Dec

Not much in way of change, they tried to take me off Cpap but my sats dropped to 79% so still using Cpap, but have brought down the oxygen level to 10l and the professor hopes that after my second dose we will see a difference but if we don’t then it may be the only option to do a ventilator with a bronch. I’m not too worried about that, if it needs to be done to fix this problem I’ll happily get a tube down my throat. So dad left in the hope that tomorrow will be a better day even.

Thursday 10^th Dec

We have some great developments, my lung x-ray looked better, my chest is souding better and I’m slowly be weaned off the amount of oxygen I’m on. I was put onto nasal grips and started on 7l which later dropped to 3l and my lungs continued to work. Not quite as well and I’m still feeling pretty breathless but that hopefully going to rectify itself. Professor Corrigan popped his head in and said, looks like I was right, looking better.

At night I was dropped to 1l of oxygen, and I slept through.

Whoops, whats this all about ??

Monday 7^th Dec

It was down to 36 in the morning but my lungs felt terrible, I felt like I had cf lungs again and had to ask Doug to go get me things which upset me as I kept saying this is meant to be in the past.

I phoned the Outpatients and told them that my night had been terrible and I felt breathless but unsure if I was panicking, though I did say that my nails were blue and they hadn’t been since tx. She said if I wanted to give myself peace of mind to go and contact my Cf unit who would check me over. I was doubtful as to whether to do this but Dougie talked me into it and I phoned the CF sisters. They got me up there for x-ray at 11am and Doug’s dropped me off on his way to get his van MOT’d. I didn’t contact mum or dad as I was hoping I was over exaggerating but when I tried to walk I felt I was back to how it was on my very worst days.

Turns out my sats were at 66% when I arrived post x-ray and soon enough Dr Ross was in seeing me, either it was infection or rejection. Either way I had to be transferred down to Newcastle in an ambulance. I was placed on 15% high flow oxygen which only managed to get my sats at 94%. I’ve never been on such high oxygen, even when I had my lung collapse.

Anyway about an hour later I was taken into an ambulance and thus began my new chapter. Dad was following me down. I arrived three plus hours later smiling but feeling terrible. The staff got me onto high flow and then later put me onto a Cpap machine which would push air into my lungs and help me breathe deeper. There was no way a bronch could be done to check what the cause was because of the high level of oxygen I was on, the only way it could be done would be using a ventilator so instead the Professors decided to start me on rejection therapy using iv steroids.

I know my dad is really worried, I can see it in his face, and he’s almost in tears which are not like my dad at all. I try to tell him that I have a great feeling I’m going to be fine, like before when I was blue and no one knew quite what to do but I knew I was going to be ok in Gartnavel.

Slippery slope of tiredness

Sunday 6^th Dec

I awoke tired and went downstairs to see if I could sleep whilst watching the movie channels dad had got for me to enjoy while I was staying with them, however I ended up back in bed at 11am till 1 pm. I woke but was still pretty sleepy for the rest of the day and didn’t have energy to take missi out properly. I made mum and dad dinner and then Doug and fin came round and we headed to mine. Donna Rice came to visit me with amazing presents, a gorgeous new purse and socks and bracelet and then for my actual transplant she got me a Disney couture “Dreams come true” necklace. So appropriate, she said she had the lady at the counter crying. I love donna; she’s just such a breath of fresh air.

I had felt tired all day but my night temp was high so I checked it for the rest of the night and it seemed to be steadily rising, I phoned ward 27a and Helen said to phone the outpatient in the morning if it was still up.

Home home home

11^th December 2009 –One month later

So I got lazy, very lazy and I never gave the good news about getting home on Wednesday 2^nd, it was great to be home, taking missy out and getting used to doing things for myself. Also trying to do some extra fitness stuff but the walking of missy mainly did that, then on Friday Dougie and I got to go back to mine and spend the night which was fab. On Saturday Doug spent the day tidying up the garage and I mainly lounged about putting my tiredness down to not having slept all that well lately since being in hospital. We went out on a bike ride, on dougies single speed bike which was blooming hard work. But fantastic to actually do it.

Doug went off on Saturday night to go climbing with FInly on Sunday; I had pushed him to go cos he’s been so good at weekends constantly visiting me that he needs some time to do what he loves too. So I went back to mum and dads.

Only pain right now is my uncontrollable eating due to my steroids, I eat myself so full that I can’t eat any more and end up feeling a bit ill. SO have to start putting a stop on my eating.

MUMMY come to the rescue . . . . .

Saturday Day 18:

I woke at 8am and did my drugs and colomycin before heading back to bed and I slept in till 10.30am. I was so happy to be still in bed at such a late time, it’s the best sleep I’ve had ion ages. We watched another wire and stayed in bed for most of the day. Then Doug’s jumped over to lie beside me and knocked my knee where it dislocated. I lay for about 3 minutes trying to put it back in whilst trying to not pass out. It eventually went back in but Doug wanted to call the hospital.

Mum is coming to join me this week as I can’t stay in the flat myself. We have a clinic appointment on Tuesday morning, so mum arrived about 2pm today and we had some lunch. At 3.30pm Doug’s and I went for a walk and braved the Newcastle winds and rain. As we walked Dougie said he hadn’t ever walked as fast for as long with me before We took a walk around the park and pond and back to the flat but it was a 50minute walk and my legs were killing me.

My mum has brought stuff for me to exercise with which should be grand, we spent the rest of the day watching TV and then had curry and pizza for dinner. I have eaten so much today, so so much. Doug’s left at 8pm, it was sad to see him go but know I will see him again soon. Xxx

Life in the flats - oh and finally the tummy works!!

Day 17: Saturday

Yay I’m doing poo’s!

Julie, mark and I watched some TV on the laptop today then headed out to find a McDonalds after Mark had mentioned Chicken nuggets. Mmmmmmm I had a lovely bacon, cheese burger, it was extremely scrummy and lovely to get out properly from the hossy in the car.

I phoned Nicola who at the moment is I Gartnavel with her abscess which is acting up again after she coughed up her valve. It was lovely to talk to her again as I phoned her the other day. I know she is having a rough time at the moment but she has been a rock to me when I have been having bad feelings. I said just after my tx that I didn’t want to flaunt it in her face but she replied saying that she thought she would be jealous but she is just really happy for me. She is such an amazing girl. . . . I hope this gets sorted for her.

We then came home, Doug’s was working on his van as it needs its MOT done this week so I said to head over after it was fixed. He left the house at 6.30pm to head here. Julie and I headed to the chip shop whilst mark watched the Wales, Australia Rugby game. Chips, gravy and mushy peas yummy.

Doug arrived around 9 and Julie and mark headed off. I’m going to really miss Julie; she has done so much for me and helped me in so many ways my gratitude can’t be verbalised. I just hope she realises how much her support has meant to me.

It was so lovely to have Dougie here, we watched The wire and I fell asleep, waking at 4.30am and waking Doug’s up and then having a wee chat with him. I fell asleep again and didn’t wake again till 8am.

YAY FLATS HERE I COME!!

Day 16: Friday

I went down for a lung function test today and from what I could tell the results were good, I’m already double my lung function and once I start regular exercise it will only improve. The doctors are happy with me going to the flats so Julie took my stuff over and later on we both headed to Beechwood flat 4. It’s basic but it’s great to get away from the hospital.

Julie’s man mark was heading up tonight, after returning from Afghanistan, he is such a nice guy I hope he treats Julie well. He was arriving about 2am.I woke about 4.30am, and went for a wee poo yay! Then I couldn’t sleep so I put on my iPod and danced about my room. I then sent everyone a wee text to say:

“It’s 5am and I hope this doesn’t wake you all but just been Dancing about my room and wanted to send a text to every one of you makes this journey all the sweeter. I’m such, such a lucky girl to have the most amazing support network around me. You guys make every bit of pain worthwhile, you make every laugh ten times better and you give me a reason to get myself fit and well so that we can party into the night. I thank you for giving me the inspiration to beat the rough days. xx”

It says its thursday . . . mummy visits!!

THURSDAY

I took a sleeping aid on Wednesday night in the hope that I would get a kip however I fell asleep at 11.30pm and awoke at 1am. I thought the nurse had given me the minimum dose so I asked for more but she said it was probably not a good idea as I would be a zombie in the morning. After I had a little cry she went to check how much I had been given and sure enough I had been given the full dosage.

Julie had warned me that the sleeping pill would only be an aid and would not work if I worried all the time. The nurse asked me if I had an iPod and why not try listening to that. I gave it a try and lay listening to mogwai MR Beast very softly and I dozed off. I probably woke about 4/5 times again and went to the loo but every time I replayed the album I drifted off again after a while,

I woke at 7.30am and felt much better for it.

Mum came to visit me today, it was lovely seeing her and I am sure she noticed a huge difference. I’ve kind of gotten used to not coughing and feeling good without oxygen so I think it was great that she seen me so well if not a little sleepy due to my good sleep the night before. We took a walk to the patisserie where everyone knows Julie and had some lunch, dad then met us after work and we headed to Jessop where mum bought me a gorgeous cardigan. Spoilt rotten.

A lot of the nursing staff had presumed that it was just dad Julie and I, I have had to explain a few times that I chose dad and Julie as my first visitors for week one because if things hadn’t went as good as they had my mum wouldn’t have coped as well as they two would and I think that was the best decision I could have ever made. I’m lucky that it did go so well but if it hadn’t I think mum seeing me in a mess would have been too much for her.

Mum, dad and I did some teaching with Helen about my drugs, rejection, things to eat etc and then dad and Julie went to asda to get me food as they are talking about shipping me to the flats on Friday. I will therefore need some food for the flat as the hospital won’t feed you there. I’m not quiet letting myself believe I’ll get to the flats tomoz but it would be fantastic if I did. Julie has moved into the other flat from the temporary flat so Dad and she also took some of my unneeded stuff away

Mum sat with me whilst the doctor tried to get some blood gases, third time was the charm but I sat with my back soaking with sweat trying my hardest to relax. It didn’t help that the doc said that blood gases were one of the sorest things he had to do.

Mum and dad ended up having to leave earlier than planned because Tracey had fallen in asda and needed stitches. Dougie very kindly obliged to go out and look after the kids whilst Tracey went to A&E.

Thursday night was another alright sleep. Listening to mogwai again I didn’t wake till nearer 8am.

I've lost what day this was written

Yep I’m naughty and I skipped a couple of days but in all honesty last week was one of the hardest weeks in my life and not because I was in pain but because I let my mental state get the better of me.

I don’t know where I would be right now if it wasn’t for Julie. You can tell from the email I was going to send above that I was pretty sure that my bowels were never going to start again. I had an impending feeling of dread when I thought about it and pretty soon my every waking moment was spent urging my tummy to work, which of course is putting undue stress onto my body and probably making the possibility of it working even less.

I spoke to the ward sister on Wednesday morning stating that I wasn’t in a good place mentally and that this truly wasn’t like me at all. I never let this happen, my whole life I have been optimistic and positive but somewhere in my gut it seemed it was telling me things were not going to be ok.

The psychologist was coming to see everyone on Wednesday, so Julie had told me not to hold back when talking to her. I think Julie was hoping maybe it would help ease my mind as she has been dealing with the brunt of my anxiety and nerves. She does her very best to explain that everything is ok and I hear her and try my best to believe but for some reason it just doesn’t sink into my head so for the past 3 nights I have had 6 hours sleep in total. The rest of the night is spent worrying, sitting on the toilet and pacing my room.

The nurses are aware but can’t say anything to help me and I tell them I’m fine, the only person who has some incline to whats going on inside my head is Julie and it must be so frustrating for her.

Anyway I spoke to the psychiatrist who was excellent, she explained that because I had been through a huge op I was going through trauma and having traumatic episodes. I explained that when I went blue earlier this year and the docs got extremely worried and everyone else around me I knew in my heart I was going to be ok but that this time I had a very bad feeling that things were not going to be ok. She explained that any negative thoughts would be exploded ten to one hundred times within these confines.

It was actually great to tell her exactly what was running through my head, without worrying about upsetting her like it would Julie (I know she acted angry and frustrated with me when I said it out loud but I don’t doubt for a minute it upset her too).

She did a final assessment on me using a sheet and it turns out I scored severe anxiety, I will be starting some anxiety pills which although I feel I should be strong enough not to use I could use the extra assistance at the moment. I know once this tummy situation has sorted itself out I will be much more at ease but until then a nice sleep would be grand.

The rest of our Wednesday was spent laughing and joking and I was feeling one hundred percent better than I had the night before.

K x

Day 14 - freaking out a bit

Day 14: Wednesday early morning

Face book message I was going to send back to mark but thought better not to.

I think it’s more serious than that honey though the docs are saying else wise; I've had about 10 enemas with no effect, lots and lots of laxatives and that stuff. I think I’m being paranoid but there are little to no sounds from my stomach or bowel, the stomach ended up full and not clearing sufficiently so I have poo within my whole region there, they are going to keep trying enemas etc and say that my bowel just needs to wake up and once it does the stomach should follow suit but I have a feeling neither is going to happen. I'm sorry for sending this to you, Julie is with me and staying at the flats and she would kill me if I was having these thoughts. I know I’m para just after an op but it just seems like there isn't much else that can be done, except a pill which will cause the peristalsis but then I don’t think it will kick start it. The lungs are amazing though, I can walk up stairs without having to worry about breathlessness. I bloody hope my paranoid mind will be utterly wrong about my feelings earlier but hey.

Love you loads honey

Kirsty xxxx

Day 13 - its a bit rubbish

Day 13: Tuesday

I didn’t type yesterday as I haven’t been in a good place, negative thoughts overtaking my mind and not helping at all.. So today Julie and I went for a walk outside around the park, I have been totally disconnected and thinking I have been going mad, so I thought a walk about would be great and it did help a lot then the negative thoughts crept back in and again I pissed off Julie, she is the best to have here for this. I give her all my negative thoughts and she tells me its piss. Total piss. I can’t do this journey with a negative mind, I have to be positive, the way I have always been.

Poo will come the doctors are sure, it’ll just take time for my bowel to kick in properly.

Later on after my soup dinner, we went for another walk and we went to see where Julie has been staying for the past two weeks. I climbed up the two flights about 30 steps without losing any breath at all.

So hopefully I’ll get some sleep tonight.

Day 11- and the beat goes on

Day 11: Sunday

Docs will be round tomoz but being on a liquid diet means I’m not getting too bloated. I need to stop obsessing but its mighty hard not to. I’m self medicating now and going over my teaching notes so it’s only a matter of time before I would be able to go to the flats if I do a jobby.

On another note Julie is back, minus dad. She’s brilliant. She leaves next Friday so it’ll be nice to have her around with me for the next five days. Dougie was here today and we watched the wire whilst I sat again head down with an enema in. Then we went for a walk and also did some exercise on the bike, it was sad to say goodbye and I cried a good bit saying bye to him but I know that this op has given us hopeful years together.

He got a flat tire on his way back and the weather was supposedly miserable. He had to change it on the motorway.

Not too much else happened today, I am hoping the physio may take me to the gym tomoz if I ask nicely or even in the next couple of days. I have so much time on my hands so I obsess. It strange being in the hospital and feeling so fantastic.

Well let’s hope it stays this way. I’m one very lucky girl I realise that, even when I do moan about needing to jobby. X

Day 10 - still no joy on J front

Day 10 Saturday:

I got up about 7 and did my morning drugs to be checked by Julie the ward sister. I then spent a lot of time pottering about feeling bad for myself and my tummy and being a bit of a crap bag in all honesty. I sat in bed and had a wee cry and tried to stop myself crying whilst Julie hooked me up to the machine. I’m not used to the basics in my mechanics i.e. doing a poo, not to be working.

I got hooked up to my iv about 9am which meant I’d be hooked up till about 12, I watched corrie Norrie and Emerdale and felt a bit shittier. Mum phoned and I did the worst thing ever to my poor wee mum, I cried down the phone about feeling so rubbish with my tummy, I was seriously bloated and felt like I was being stretched, I told her not to tell Julie but she said her face gave it away. mum told me to speak to the nurse about my worries. I went to see the nurses and the doc was there at the same time (Ben) he said that they would be a lot more worried if they hadn’t seen this many times before. Julie said she had one girl who took over two weeks, so I’ll probably be about three.

I decided to do something instead of sitting on my tod and feeling rubbish, so I wondered about getting on the bike, then as if it was meant to be the cleaner moved it up as she was going to clean the floor of the room it sits in so I just jumped onto it in front of my cubicle so I got on at 10.05am thinking that it would be nice for Doug’s to walk into the door and me to be sitting on the bike peddling away.

Then it got to 10.10 and the 10.20 and I was listening to Julies iPod shuffle and finding some great tracks so I just carried on cycling. The cleaner was talking about how she wouldn’t last a minute on the thing then I began to sing a wee bit and Julie said she should call Simon cowell, of course I was wearing earphones so I thought I was only singing in my head.

I kept on cycling, sore legs, kept on cycling, sore bum, Dougie still hadn’t arrived, kept on cycling, heartbreaker by will I am and Cheryl Cole came on and made me laugh cos Doug’s and I make fun of will I am appearance on GMTV doing that song half asleep.

Then I knew I had been on for some time, Julie went to make my bed and then gave me a wee pat on the shoulder when she was done as a wee reassurance that I was doing well and then Search for the hero by M people came on which reminds me of Julie G doing my parachute jump when I had to bail out due to ill health, so I carried on until that song was over.

And I did 50 minutes!!!!

I got off the bike steadily and took my time to get to my room but my legs weren’t nearly as shaky as they had been previously and I thought I would check to see what my sats were at.

Before my oxygen sats would sit around 85-87% with 2-2.5l of oxygen, once I climbed dougies stairs and checked them and they sat at 64%, but as I put the finger measure on the TV read 97% and after exercise!! I started to cry again from joy and amazement. What a gift, what a gift indeed.

Dougie as sods law would have it then arrived 2 minutes later as he had slept in and had sent me a text to tell me, I phoned mum, then dad, neither answered so then I phoned Julie who I told about my fifty minute bike ride and my 97% o2 levels who then told me to tell missi as she must have been out walking her. She said missi was so excited she tried to steal the phone in her mouth. HA ha.

Julie told Dougie time keeping was very important if he was my nurse, he was obviously very impressed by my amazing feat ;) I think he was a bit sad he missed it but he made up with it by taking Julies role for a weekend and doing my exercises with me which consist of twenty squats, twenty heel raises, ten sit to stands without using hands(bloody hard work for me and keeps Julie amused at my feeble attempts- though I do complete them just spectacularly pathetically). And now we have some arm weights to incorporate our triceps dips and curls.

Dougie came in and we sat looking at wallpaper for the house. I was meant to be getting my wallpapering done this weekend but due to this amazing surprise I never got to pick the stuff, I had tried this week to pick paint and mum would get Bobby the decorator to paint for me and do the walls and other time but after mum spent three hours with caity in B&Q and homebase I had to tell her to let Bobby know I couldn’t pick my paint. I felt horrible as she had been standing phoning me loads and trying to sort out which stuff to get. She said she was surprised the B&Q staff hadn’t reported her and her sidekick. Poor Caitlin.

A bit later the surgeons came to see me, had to get Doug’s to nip through to the other room. They had a wee feel of my tummy, I was in a much better frame of mind and told them that this was really tight and big for me but that I know I shouldn’t moan about it as I had been given such a wonderful gift, he had a feel and said that it didn’t feel nearly so bad to him, obviously because he has seen many very distended tummy’s. He said the best course of action would be enemas with me getting slanted right up the bed head down so that gravity could take effect. I asked him what his next plan would be if that didn’t work and he said he would hold out, there was no immediate need for me to undergo anything. He said he would keep an eye on me. He asked what age I was and I said 25 before correcting myself to say 26 and that my birthday had been the day before my call and what an amazing present it had been. He said I was clearly a very positive girl and that I was looking amazing having had a transplant just over a week ago. He said the lungs were doing fabulous and Julie told him I had been on the bike. As he left he said it would happen and I said when it would it would be the second greatest day of my life, the first being my transplant day.

Julie and Ben were talking outside my cubicle with my door open about the plan of action the surgeon had said and Julie said he had said I was such a lovely girl, to which Ben replied, oh yeah you have wowed over everyone here, everyone praises you on how lovely you are. I told them that he’d been talking to compulsive liars.

The surgeon had also said stick to a liquid diet, which in hindsight makes a lot of sense, obviously, only wish I had gorged myself so much, Can’t help but feel me waking up day after op and eating three meals probably wasn’t the best plan but the whole team had been really pleased about it, even the tx co-ordinator had told someone who had been for tx assessment the next day about me having gotten up and eaten and sitting up(I know this as this person was on the cf site).

So Dougie spent the next part of the day with me resting against him whist rubbing my tummy, I had worried about my swollen body and the mess of me but he doesn’t look at that, well I’m sure he does but he doesn’t show it, he was just feeling bad for me for having such stretched skin.

Lunch came and I tried to eat some of my mustard chicken and creamy mash, thing is it’s a catch 22 I can’t poo but I’m so hungry due to steroids. I ate a tiny bit but felt terrible after. The nurses handed Dougie an extra portion of chips that had been ordered.

After lunch Julie came to do the enema, she did two in one go and she was feeling bad but like I said to Jenny who also had the great work of doing them I felt bad for them having to do it. Doug’s came and joined me after and we watched a wire as he rubbed my tummy whilst I was positioned head down on the bed slanted, lying on my left. I then got my neck dressing changed and then I got my stitches out YAY!! All whilst I lay in this funny position. I even swapped sides to makes sure that the stuff got dispersed a little more which was Julie’s idea.

After two hours I got up and tried on the loo after giving Doug’s his marching orders for the next five minutes, he came back to see my little sad face and I had a wee cry. Just a tiny one, maybe only two tears but still I’m not a crier with stuff like this, I never feel like it helps to have a good cry with Cf stuff, not really I always like to attack it from the opposite angle with humour.

We had some dinner, Doug’s had my lasagne and chips and I had a scadishake that Julie made for me which was rather tasty. We then went for a wee walk about the hospital, making sure we didn’t venture through any corridors with people around and stopped at the shop as it was closing and empty. I know Julie you’ll kick my ass but it was empty and the nurses said that would be ok, I didn’t even buy anything but it was nice to walk that far, I did freak myself out a couple of times and have to tell myself off for my erratic breathing.

We got back and I got another enema near 7pm. Again I lay on the bed up angled and even more so this time but we watched another wire and then Xfactor, my night nurse came in to see and was surprised. She said I had put everything into getting this working, I said it’ll happen, and if it doesn’t they’ll have a plan for me.

It was actually really lovely to spend the day with Doug’s, I have had a couple of cries but told him that he had to take Julies offence and tell me to shut it when I moan.

I can’t actually believe I’m talking toilet to my boyfriend or that I’m sitting with an enema in whilst he rubs my tummy but it just shows you what an amazing man he is. I am truly gifted and thankful for the support I have around me. He also spent a lot of time looking at wallpaper as bobby is going to do my walls on the 12^th 13^th Dec and choosing our favourites and we ended our night with watching Tenacious T Pic of destiny. Doug was here till almost 11pm but the nurses didn’t mind, she had come in to do my ivs. And then he made me do my exercises one last time. We said night night and I got settled into bed which is still tilted as I find it nicer on my tummy and legs which are still swelling but to be expected.

And then I tried to sleep but thought that today had been such a good day that I should document it before I forgot anything.

I forgot to mention the nurses are letting me do my own meds now, so I’m getting closer to outside life with these magical new members of my body. xx