Chloe Patterson
Age 19
Such an inspiration to us all
Miss you and Love you to the moon and back



Hello, my name is Chloe and I'm 19 years old, I'm a fun, bubbly and generally excitable kind of person I spend way too much time on Facebook and Twitter and watching TV, I LOVE cakes especially cupcakes, I also love spending time with my amazing friends and family :) I have cystic fibrosis and am on the list for a double lung transplant praying each day my call comes soon !
Links

My blog Cystic Fibrosis
Thursday, 15 August 2013
A bit about me
So I thought I would give this blogging thing a go, I have always wanted to blog but I guess I never really knew what to write or if my life was interesting enough. Well my name is Chloe Patterson and I'm 19 years old, I am a fun easy-going kind of girl and love spending all my time with my family and friends. I love arty things like cartoon drawing, my real passion is making cakes especially cupcakes it’s just so much fun. I believe in living life to the fullest and live everyday like it’s your last you will understand later. Daily treatments and numerous hospital stays for IV antibiotics are completely normal to me and became routine however, I choose to start blogging about my life as it’s not like any normal 19 year olds, see I suffer from this inherited illness called Cystic Fibrosis (CF) I was diagnosed at 9 weeks old so I have lived with it all my life.

I have choose to start blogging as last year my life changed and all the daily treatments and medications I take and IV antibiotics just weren't enough to keep my lungs in good enough condition and now I am currently on the list for a double lung transplant. I hope and pray each day that that all important phone call comes soon and I can go back to the fun, energetic and outgoing person I used to be, but most importantly to be able to breathe easy. I was referred to Freeman’s Hospital in Newcastle in 2012 for a transplant assessment, you see it's not just a case of right she's not well let's list her and bam you’re on the list! Firstly you have to go through tests to make sure you are not only ill enough to need a transplant but also well enough to undergo the surgery. It's a fine line however after a week in Newcastle back in March 2013 I got the amazing news that I was going on the list for a double lung transplant, it was an emotional week but I had the amazing support of my family and friends.
Posted by Chloe Patterson at 11:36 am


Tuesday, 20 August 2013 What a week...
So I have been staring at this screen for the past 20 minutes wondering how to put the past weeks recent events into this blog. I am going to start with the bad as I want to end this on a happy note. It pains me to say that this week 2 of my CF friends unfortunately lost their fight, the news devastated me, especially because they were on the ward at the same time as me. I am strong person emotionally but I will admit this tested me and I did lose it at one point. I get told over and over again by people who love me the most it’s okay to cry and to let it all out but I worry if I do that I won't stop. I really felt that something was clamping down hard on my chest making it all the more harder to breathe not a nice feeling. I never want to experience that again however being part of the CF world I know that losing people can happen at any moment something I know all too well for my liking.

I will cherish all the good memories I have gained over the years and I gain comfort in knowing these two amazing guys can finally breathe easy something a lot of people take for granted. My health was also a bit of a concern this week, you see when I come in for my 2 weeks (or longer) for stronger IVs they usually work but it was nearly the end and I was still spiking temps although my CRP (infection levels) were down to 74. So my doc decided to phone Newcastle to use one of my drugs they have chosen to use after transplant. There is two problems with using these drugs 1) I would need to come off the list whilst on the drug 2) my lungs could become resistant to the drug meaning it would not be as effective post-transplant. Luckily for me I didn't have to come off the list as my doc chose to use the second batch of what Newcastle like to call your "cocktail list" personally I like it!

It has been an exhausting week both emotionally and physically what with the high temps, sad news and the IVs just taking its toll making me really tired. I know I need to be strong though and somehow I stay very positive as I HATE negativity but like I said this hospital stay although hasn't been my longest has been one of the hardest.
I am happy to write that I am hopefully getting to go home on Thursday, I will stop the back-up IVs and go back onto my regular IVs ones that my Mum and Sister can do at home for me. I can't wait to go home and be with the people I love the most, to enjoy my Mum’s meals and chill on the couch watching Criminal Minds and also sleep in my own bed. I know I will be back here soon normally get two weeks at home and this time I have only been in for a little over 2 weeks but this time I can't wait to put this admission behind me for many reasons.

So I will end this blog by saying R.I.P Stuart and Christopher, I hope you are in a much better place and having fun up there. I will continue fighting and waiting for this all important call :)
Posted by Chloe Patterson at 3:50 pm

Tuesday, 27 August 2013
Some dreams can come true
It's not been that long since I last wrote on this blog but I really felt the need to write about this one. It's all about a dream I had last night, not just any dream but it was so surreal and took dreaming to a whole new level.
It started with a phone call in the early hours my mum answered I could hear the whole conversation even though I am in a different room than her in the house but it's a dream weird things do happen ! So she came running frantically through to my room shouting LUNGS LUNGS LUNGS !! What did I do ?? Rolled over and told her to shut up and go back to bed and stop being silly it wasn't my time for new lungs. Once she reassured me it was a true phone call we were told to wait for the ambulance with our already packed bags waiting at the door.

As this was a dream it totally skipped the ambulance journey not to sure why, next thing I knew we were at Newcastle. I was on this little trolley bed thing and was wheeled to theatre immediately. Every time I went to theatre when I was young my Dad always used to come into the room where I would get out to sleep as my Mum couldn't do it she would get to upset, this was what happened in my dream my mum was crying so my Dad took her aside and reassured her he would go in with me and comfort me till I was asleep. I held onto him so tightly it felt so real I was terrified and said numerous times I didn't want to go through with it but they knew that was just fear talking, I put my head on my Dads chest and with that I was put to sleep. The next part of this dream is my favourite I open my eyes and there surrounding me is my whole family about 20 people all around my bed (that won't be allowed when it's really time for transplant for infection reasons) I still have my NIV on but no tubes attached to me.

The Head Surgeon comes in and says the op went exceptionally well and whenever I feel well enough I can go home. I look around this huge room I'm in the ICU and wonder how I got here I am totally confused but after a while it all sinks in and I start to move I sit up then stand then walk before I know it I'm running down the corridor of the Ward. The Surgeon spots me and says well you seem much better you can go home when you like. My Mum packs the bags like we have been there for ages, we then head out to the car and head home back up to Scotland. I'm still on the NIV and my Sister turns around to me and says are you going to take that off now, I look at her with a look of fear I mean this machine has basically been breathing for me for nearly a year I am quite attached to it, but I knew she was right (in the dream of course haha) she takes my hand and helps me take it off I hold my breath scared that if I try to breathe on my own it won't work, both of us sitting in the back of the car holding our breath.

I had no choice I had to breathe so I did and there are no words to explain how amazing it felt to breathe on my own I know it's only a dream but it felt so real and amazing!
Once we got home I ran into the house up and down the stairs about 10 times round and round the Living Room I just didn't stop I couldn't I wasn't even breathless I honestly felt like I was on top of the world, and that's when it happened, that's when I woke up! Unfortunately it was time to go to the loo.
This has been the best dream I have had in a long time and I am taking it as a sign that I am going to get my new shiny lungs very soon as for now more of these dreams please !
Posted by Chloe Patterson at 3:38 pm



Monday, 2 September 2013 Feeling good
Nothing makes me happier than starting this blog with the great news that I am at home right now. I got home on Friday after just a week’s stay in hospital one of my shortest stays in over a year. I have changed one of the IVs which I'm am currently doing at home right now it's only twice a day and seems to be keeping my lungs stable right now. So time to get you all up to date then, Friday was a good day my Sister came to pick me up (in case you didn't already know she looks after me during the week while my m
Mum is at work I can't thank her enough she really is a great Sister and I love spending time with her it really makes me happy) she had to learn how to do the new IV drug but as usual she was a natural. So we got to leave just before lunch we couldn't get out quick enough.

Once I got home I chilled for a bit then Lauren and Oliver arrived, love seeing them, then everyone stayed for some dinner it was great. Me and Mum stayed up quite late then decided to go to bed after some Criminal Minds.
Unfortunately Saturday morning was pretty rough I had a temp and was really struggling to breathe, honestly I could really have done with some new lungs then just for a relief, I work through the rough times pretty well I think but I have a few seconds sometimes where I think I can't take it I just want it to stop but I always manage through as I know it will always ease and get better. It got better and I had planned to go out to the Cinema I got to go, I couldn't believe I managed the Cinema I have never been with the NIV machine before but it was fine. This has made me so happy and given me so much more confidence to do it again, you don't appreciate the small things in life until they become obstacles put in front of you. I had such a great time and for the duration of the movie I felt normal, whatever that is. I can't wait to go again soon.

Sunday I woke up feeling really good I felt good breathing wise too which I am always really grateful for as I know I could feel really breathless at any point. I saw my Dad which was nice, always good to see him. Mostly just had a quiet day relaxing with my Mum, Sister, Andrew and Oliver again.
Today I am feeling okay had transplant on my mind a lot today but I have those kind of days, quite breathless today and slept a lot so I think I will try for an early night tonight although I struggle to sleep at night these days.
So hopefully I manage to stay out of hospital for a while as it's Oliver's 1st birthday on Thursday and his little party on Saturday I can't believe he's going to be a year old already it's truly amazing how you can have so much love for one little person he's not even mine and I would do anything for him to protect him. That's me for now I will update again soon.
Posted by Chloe Patterson at 11:06 am


Monday, 9 September 2013
Just breathe
It's supposed to be easy, supposed to be something we do each minute of each day without giving it a second thought, it's supposed to be natural. Breathing is supposed to be easy for all of us now having CF I am well aware that breathing can be hard sometimes but this week breathing has become like a war zone, a constant battle and I am exhausted, the front of my chest and my sides are aching as my muscles work over time while I struggle to breathe. I knew this journey to transplant was going to be hard but I wish I had known just how hard it was going to be.
The last time I wrote I was at home I was struggling a bit with a few days of temps and just not feeling 100% so after 4 days at home I'm back at Gartnavel again! What can I say I guess I just love the place? Again I'm gutted but know it's the best place for me right now.

A week has nearly went by and I have really struggled through needing Oramorph and Lorazepam every hour just to breathe, this has made me so sleepy. Also the IVs are making me feel sick but there's plenty of good anti sickness for that. So here we are, back here again, but after nearly a week things are not any better, even though my CRP is up and down it's not horrendous which is a good thing.
Today had been hard I guess it was all a bit too much and I lost it emotionally crying in front of my Doctor nice one Clo! He has decided to start a new IV tomorrow so hopefully in the next few days I start to feel better it’s an infusion though so will be here for another two weeks but I need to feel better I can't go on like this. Like I said I got upset so did Mum it was like let's see who can cry the most! I know my Doc felt bad but it's not his fault it's not anyone's it's life and it's just how it goes I don't blame anyone that's not fair

I guess people just don't get it I mean what it feels like what it really feels like to fight every breath you take I'm not being dramatic here it really is hard and this week has took a lot out of me but I proud to say I'm strong and one small fighter (all 4ft 11 inch) of me. I have only been waiting 5 months for transplant but I need it so badly I want it so badly it's one of those amazing gifts you think I will never get that it's too expensive or I'm not cool enough for that but if all I had to do was pay for new lungs I'm sure I would find the money somehow.
I was roaming Twitter last night and noticed I had a new follower so I decided to check them out, turns out she's a CF and is also on the list, so I was looking at some of her tweets as you do and this one tweet took my breath away. She had tweeted that she had been waiting for 40 months on new lungs now and would never give up hope.. To me that's inspiring and so strong I hope she gets that call soon.

And here I am having a meltdown after 5 months, it makes you stop and really think for just a minute there's always someone out there having an even worse time than me. I know people are only asking and trying to be nice but it really annoys me when people ask 'so have you heard anything about lung yet' I mean really? I know they don't understand how it works and I try to remind myself they just don't get it but it does get annoying.
The settings on my NIV have been changed today allowing me to gain a bigger breath this has really helped and made for the first time in nearly a week breathing a little more easy and I have not had to have any Oramorph or Lorazepam all day I am totally exhausted as I have probably worked a bit harder than usual but that just means I will hopefully sleep soon.

I am missing home so much these days it's the simple things you miss like my own bed, my TV, my room, the couch, just my home in general. I miss my old life so much I feel so restricted now I hate not being able to just get up and have a shower without help or making food for myself. The past few days I have just wanted to take this mask off my face and be able to breath without it and the oxygen. I also just want to escape, go somewhere nice, the Beach again to feel the sand between my toes and hear the sound of the waves also the wind in my hair it's my idea of heaven. Hopefully I will get on holiday after transplant one day soon until then I have a good imagination luckily.

Well my eyes are rolling now and I think I have you all up to date sorry it's quite a depressing one but writing it really helps me cope I am a really positive person I promise my next blog will be happier.
Posted by Chloe Patterson at 3:57 pm

Thursday, 19 September 2013
Auntie of 2
I made a promise that my next blog would be more positive and happier. So as promised this blog will be happier.
Let me start with the most amazing news that I am going to be an Auntie again! Its funny isn't it how the news of someone having a baby brings so much joy and happiness to everyone around them. The news of my Sister being pregnant makes me so happy it puts the biggest smile ever on my face. I still can't believe Oliver is going to be a big Brother, he will be the best big Brother I know it. A baby just brings so much happiness especially when life is so hard for us at the moment. The news has brought that extra strength in me to keep fighting hard and never stop. I need to be the best Auntie I can for Oliver and now this new bundle of joy. I only have one concern though, how do you have enough love?

I mean I can't even begin to explain or put down in words how much I love Oliver so how am I too love another human being the same? Equally? I can only try.
Unfortunately I haven't had the best week health wise and I know I said I was going to keep this post happy which I have partly. I have really struggled mainly with sickness and breathing, it's a constant battle. However my Doc upped my MST (long acting morphine) dose and finally it seems something is working that and the change in IVs. I think its the IVS that are making me feel so sick but I guess you can't have it all. Also the new MST dose has made me quite drowsy and the last few days seemed to have rolled into each other, hopefully I get used to it soon and get back to feeling like myself again. I have been struggling to get to sleep at night, finally nodding off around 2am each night it's not good for me I need all the sleep I can get so I can put in extra energy into breathing. It's at night when I feel the best and think the most. I like to watch DVDs and surf the Internet.

I managed to get out on pass last weekend for my Cousins Christening I loved it to get out and see family it always makes me happy. I must admit I struggled a bit but got through then me and Mum went home where I just fell asleep before my Dad brought me back to the hospital. I loved being at home even just for a few hours it's just amazing I never want to leave.
We have decided to throw a Halloween party where it will be £5 a ticket to get in and all the money raised will go straight to the CF Trust. There will be raffles too and other things going on to raise money. Things like this get me all excited I just love having things too look forward to and have things planned it takes my mind off transplant even just for 5 minutes as it seems to be all I think about these days. Having this to look forward too and to help plan will keep me busy enough. So that's really all I have to report this time it's all exciting with the new baby and fundraising stuff going on.
Posted by Chloe Patterson at 3:17 pm


Wednesday, 25 September 2013
Time for a new hobby?
I need a new hobby, something to focus on, and something to keep me busy! You see recently all I seem to be thinking about is transplant or anything that has to do with transplant or just CF in general and I can quite safely say it's driving me insane.
It's my own fault really but I have been following a few different transplant stories online like on Facebook and Twitter and some people have created a blog just like I have. I love to hear the success stories that really makes me happy but some of them have not been so successful and I know I should just stop reading but I can't bring myself to stop it's like an addiction, I NEED to keep reading, I just need to know the ending whether that be good or bad!

When I went for my transplant assessment back in March I was well warned that this was a huge deal and my life would change dramatically even after transplant I could hit many hurdles, in my head I was thinking yeah okay that's fine as I can't go on living like this so how bad can "hurdles" be Well reading some of these stories it turns out they can be really bad. It's starting to scare me I need to learn to not read the bad but only the good I don't know why I feel the need to torture myself like this I guess I am just to nosey for my own good, not a good trait to have I am learning.
Friday seems so far away just now!
In other news I am getting home on Friday yep HOME I can't wait I have been here for 3 weeks too long this time and some time at home is much needed like I said I am about to go insane so a wee bit of normality will do me the world of good and hopefully I get to stay out for a while I am aiming for a week and then we shall see how I go, day at a time with me these days but hey ho I'm not complaining not one bit !


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Chloe Patterson
Age 19
Such an inspiration to us all
Miss you and Love you to the moon and back



Hello, my name is Chloe and I'm 19 years old, I'm a fun, bubbly and generally excitable kind of person I spend way too much time on Facebook and Twitter and watching TV, I LOVE cakes especially cupcakes, I also love spending time with my amazing friends and family :) I have cystic fibrosis and am on the list for a double lung transplant praying each day my call comes soon !
Links

My blog Cystic Fibrosis
Thursday, 15 August 2013
A bit about me
So I thought I would give this blogging thing a go, I have always wanted to blog but I guess I never really knew what to write or if my life was interesting enough. Well my name is Chloe Patterson and I'm 19 years old, I am a fun easy-going kind of girl and love spending all my time with my family and friends. I love arty things like cartoon drawing, my real passion is making cakes especially cupcakes it’s just so much fun. I believe in living life to the fullest and live everyday like it’s your last you will understand later. Daily treatments and numerous hospital stays for IV antibiotics are completely normal to me and became routine however, I choose to start blogging about my life as it’s not like any normal 19 year olds, see I suffer from this inherited illness called Cystic Fibrosis (CF) I was diagnosed at 9 weeks old so I have lived with it all my life.

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