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 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 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 the 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 then 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 !

Sunday 25 August 2013

Home....what's that again ?

I will start with Wednesday. I was so excited to be going home on the Thursday I couldn't sleep all night I think I eventually got to sleep at 2 or 3am. Everything was all organised and set to go I had switched over onto my regular IVs of Mero and Tobi and had had no temps so home was on the cards for Thursday. thursday morning came and I will admit I felt a bit rough in the morning just the usual sickness and a bit breathless but I mean come on I do need new lungs so I thought no big deal this is not stopping me going home. So about lunchtime my sister arrives and we didn't need to wait on a prescription as my mum had it all at home so we packed up the last of my stuff and off we went home at last.

I love a car journey somehow it always relaxes me I don't know why, it doesn't take us long to get home half an hour. Once we got home the family start arriving just how I like it. We had a great night and I decided to treat everyone to a dominos which was just amazing. After everyone left me and mum decided to get an early night so we headed up to bed this is a task itself with mum having to carry the heavy NIV machine while I get to enjoy the stairlift ! I settled in my own bed and was out like a light.

I woke a few times during the night feeling very sick and shivering even though it was like 100 degrees in my room. The whole night I tossed and turned couldn't get comfy, I was also really tight and breathless. By morning my temp was high and my sister checked my sats on our own machine at home and the were reading 60-70 % so she phoned my mum at her work to tell her and she decided it was time to phone the hospital. The CF team said to phone an ambulance and to get me here as soon as they could.

My mum came home from work and packed a bag then the ambulance arrived, by this point I was really struggling to breathe I couldn't even get out of my bed so we numbed the oxygen up to 10 ltrs through the NIV it's usually at 4-6, this really helped. It felt like that heavy brick that had been pressing down hard on my chest had been lifted. I stabled out in the ambulance and once we got to gartnavel hospital my says were back up to low 90s. So I was admitted again and started onto my back-up IVs.

Saturday was a rough day again with high temps and really breathless so paracetamol, a few doses of oramorph and a lot of sleep helped me through the day. By dinner time I had perked up though and was feeling better.

Today I was totally gutted as I missed a family get together for my cousin Ruby's first birthday I hate missing family events nothing makes me happier than being surrounded by them  and all the children in our family. I did however get a visit from my sister her boyfriend and my nephew Oliver. The brought me cake from the party so that made me smile.

I feel really gutted to be back here after only getting one night at home and I sometimes wonder what I have done to deserve this. I am the type of person who when you ask so how are you Chloe ? I always just say I'm fine with a smile on my face but that smile is hiding alot. Honestly I'm scared no I'm terrified I'm needing stronger and stronger IVs each time I come in, I'm hardly getting any time at home either. I am in desperate need of new lungs I not stupid. My mind has a huge imagination I wish it didn't but it tends to wonder making up horrible scenarios. I have a great way of dealing and coping with these hard times and that is seeing Oliver my amazing nephew he has a smile that just lights up my whole world. When he looks at me with those big eyes my heart sinks, if I'm breathless and he arrives for a visit I can instantly breathe like I have had my transplant. Last year when I was really not well and we didn't know what was going to happen my sister was still pregnant with Oliver, he doesn't know it but I know he was what made me keep going because I knew I couldn't let him down I couldn't have him coming into this world not knowing who his auntie Chloe was. So like I said I'm terrified just now but all I need to do is think of Oliver and how I need to be here for him.

It's quite late now so going to stop this one here I know I will get home again soon hopefully not to long I love all the staff here they make my stay so easy and comfortable but nothing beats your own home right ?

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 devestated me, especially because they were on the ward at the same time as me. I am strong person emotinally but i will admit this tested me and i did loose it at one point. I get told over and over again by people who love me the most its 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 to well for my liking. i will cherish all the good memories I have gained over the years and I gain comfort in knowing these 2 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 choosen to use after transplant. There is 2 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 emotinally and physically what with the high temps, sad news and the IVs just taking it toll making me really tierd. 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 mums 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 2 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 :)    









Thursday 15 August 2013

A bit about me

Hey,

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 easygoing 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 its just so fun. I believe in living life to the fullest and live everyday like its your last you will understand why later.

I choose to start blogging about my life as its 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. Daily treatments and numerous hospital stays for IV antibiotics are completely normal to me and became routine however 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 beable to breathe easy. 
                                          
I was referred to Freemans 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 your on the list ! I wish it was. Firstly you have to go through tests to make sure you are not only I'll 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. 

So this is just a brief insight to my life I hope you enjoy reading my blogs and following my roads to transplant and also learning about cystic fibrosis :)