Entering the ballot for the royal parks half marathon!!

Ok guys, this is a MAJOR thing.. I've entered the ballot for the half marathon on the 6th of October this year...Every single one of my family doesn't think I can do it and that I should start with a smaller race, but the thing is, I dont do small, or tiny...I do BIG, HUGE things...So even though everyone thinks I'm going to fail this.. I know I won't. It's not about getting a decent time or a decent finish its about raising money for CF and awareness for CF too! I really hate it when people say I cant do something that I know in my heart that I can! I've spoken to some really lovely people on twitter who have run the half marathon with CF and gone from very minimal exercise to a marathon in 5 months! so if they can do it, why can't I? Also I know that I have been sick in the past and only just properly recovered but my chest is pretty darn good at the moment and all my doctors are supporting me in this, because just like me they believe I can do it! of course I will have to have extra calories and suppliments so I don't loose the weight I've put on but they said that it shouldn't be a problem!

Overall I am really excited and I really hope I can get a place, Screw what everyone else is thinking!
I.Will.DO.THIS!!!!!

genes and bits and bobs.

soo... Today I came across someone so ignorant and rude it actually shocked me. I know that not everyone knows the signs, treatment, theory of CF but there is no need to be shallow about it. I came across a woman who thought you could "catch" CF? I mean I no not everyone one knows what Cf is but they must at least know that you cant catch it? This woman really insulted me. She looked down at me as if to say I was "diseased" (using that term lightly because we all know cf isn't contagous) I felt like saying, yeah you can catch it and fleming in her face. I literally have never been so insulted in my life. It was like she was saying that I dont have a place in society! seriously? She needs to grow up and get herself some decent education. People with CF are living longer now and with medical advances, they are also leading normal lives, so i dont see why she had to be so shallow about it? but anyways, I put her straight :L
Sorry for the rant, but you guys have to be warned about stupid ignorant people out there!!!!!!!

The Little Things In Life

The little things in life keep me going and stay on track with my routines. For example, going out with friends and having a laugh! orrrr even just being able to get up in the morning and go to college. The little things like that make my life great! when things got rough when I was gonig through my transplant and when I was put on a ventilator at christmas, the things that kept me going were my family and friends, and also the fact that I can't and won't let CF destroy my life. Life for me has actually been quite easy compared to some people with CF, I've never really got that bad with infections and only stayed in a max of 8 times for my chest, which for 18 years of my life is pretty good. The thing thats let me down the most is my digestive system and my Liver, those two things have been the worst for me, but when I am out with my friends and family I try my hardest to forget about that stuff.
The main focus on life is trying to make the best of a bad situation, "when a storm comes instead of hiding you have to learn to dance in the rain" thats my favourite quote of all time.

My Daily Rountine.

so this includes everything that I have to do day, by day.

AM:

In the mornings I get up and do all your typical girlie things like my hair and my makeup, then I have do do my medication. This includes a nebulizer, through a neb called an Ineb (no this doesn't look like an Iphone) then I have to take my anti rejection drugs for my liver, then I have to take 3 types of vitimins such as A, D and E, Then I have to take my stomach tablets to help with my digestion, I take Ursodioihydrochlric Acid, Omiprozle, Domperidone, then I have to take steriods for my liver too!
thats everything I have to do in the morning..

PM:

Pm is pretty much the same as AM except I have to do 2 nebulizers...and Physio.. which is something called autogenic drainage...this is only good if you are productive or wheezy, it doesnt really work for me otherwise..so then I use something called a sprio ball.. which has two sad faces and one happy face, you have to keep the ball within the happy face and this helps you take really deep, long breaths.

This may not seem a lot but when you actually come round to it, it's very time consuming and takes a lot of energy, its also hard to remember everything but I guess I've got used to it now seeing as I've lived with it all my life!
All this helps me stay out of hospital but it doesn't always work for everyone. Luckily it works most of the time for me because I hardly ever go into hospital for my chest.

My thoughts on Cf

Soo.. I've spoken about my experiences but I haven't really gone into depth about my thought process and how I have got this far.
Well I guess you could say that the reason why I have got this far is through pure determination? or the fact that I'm brave? or a Fighter? well I don't see myself as any of those things if I'm honest, yeah ok I've been through a lot and always come out the otherside but that doesn't make me brave. That makes me someone who is determind to live, someone who is not willing to give up because the moment you do, even just for a second CF will beat you. It will get the better of you.
The way I see it is, its like a battle feild, you get the romans fighting (CF) and then you get the power or the spirit to fight them off, to keep them at bay (me). Every now and then the romans flare up and they try and start a fight but the power always wins in the end and then the romans are kept at bay again. Good always overcomes evil and this is why I am determind to stay as healthy as I can because one day soon that good thing will be a cure, or a medicine that will dramatically change my life. They are already trialing it! so whats to say that I won't evenutally lead a normal life? It's like climbing a mountin, hard work on the way up and you may come across obsticles than can cause you to take another route or even take a few steps back. But once you get to the top you can look down and admire the view. That is what I am aiming for! that is my ultimate goal. I WILL beat CF, CF WON'T beat me!

My 18th birthday

I had my 18th birthday in november 2012. This birthday was more special to me than any other birthday! because I didn't think for a moment that I would reach it. Just after my birthday when I was 17 my life got flipped upside down, I can honestly say that I never thought I'd be sitting here saying that I made it to 18. I was prepared for death, as funny as that sounds I was. I wasn't scared anymore, I just had an overwhelming sense of peace. So to wake up of that ventilator and to realize that I was going to make 18 was amazing.
For my 18th I had a four day celebration! om my actual birthday I went to a rewards evening in croydon because I was nominated for child of courage. Then the day after it was my Dads birthday so we went out for a drink! Then on the weekend I had my best mate come to stay and then me and a group of friends went out to a mexican resturant! On the sunday my mum had organised a party for family and friends! so it was quite a hectic weekend.Of course I was absolutely tired on monday because I still have Cf so I still need more sleep than everyone else because I use more engery just to breathe. It really was an amazing birthday and I am so glad that I am alive to tell the tale.

Life now..

After all that upset and everything my life has been pretty stable. I went into hospital just before chirstmas, but that was for a minor chest infection, nothing serious. I have to keep an eye on my bones and my kidneys at the moment though because my kidney funtion never really returned to normal after last year. Also where I have been taking steriods for my Liver as part of my anti rejection, they have started to ruine my bones. Nothing to major though and nothing that can't be sorted. As a cfer I also suffer with poor Vitimin D levels because we have trouble absorbing it, this is also affecting my bones, but like I say nothing that can't be sorted!
I am back at college and I have made some really good friends their! doing well and haven't missed much at all. Only for the odd Liver or Cf clinic. My lung Function is currently the best it has been for three years, so even though I had such a nasty spell, it proves that nothing is impossible. ALWAYS aim high when you have Cf, never ever say you can't do something because if you get in the frame of mind then Cf will beat you. I had a great christmas with a new addition to the family! such a lovely suprise and so greatly cherrished! I am looking forward to summer! Swanage with the family and the best friend! hopefully I will stay out of hospital for another year! My aim is to run a 10k marathon! Crazy I no! but I honestly think I can do it. Just because I have Cf shouldn't slow me down!

Pictures Before and After Transplant

 Before Transplant






After my transplant when I still had my tube in.







NOW!!

2011 after transplant

soo.. after my transplant, life got dramatically better! I had a wonderful boyfriend who had been there throughout my transplant, I had great family and friends and most of all, I got to prom!
I wasn't going to miss prom for the world! that summer was amazing! I had TONES of energy, I'd alomost forgotton what it was like to feel so good! I went on holiday with my best friend and my family and it was the best thing ever! my best friend and I go back years and she was there throughout my transplant and the rest of my life, I wouldn't no what to do without her! so to have her with me to celebrate my life and that I managed to still be here was great!
also my mum! I was so happy! to see the releaf on her face that summer made my life so much better! I hated seeing my mum hurting during my transplant and before it, because like me, I secretly bet she thought I was going to die. This was my second chance at life, I wasn't intending to waste it!
well.. all being well, it gradually took a turn for the worst again.. In november 2011 I developed a nasty wheeze in my chest.. literally over night. I went to my local hospital and I was there for 2 weeks but nothing was working, so my doctor made the desicion to take me to Kings college for a broncosopy. I thought that this was going to make everything better..well..it didn't. I awoke from the bronc and I couldn't breathe..my sats were only at 60 and they put me straight on oxygen. I went up to HDU for the night because I was on a lot of oxygen and the ward didn't have the staff to monitor me on it. I got better and went back on the ward. It was coming up to christmas now and I was allowed home for the day, It was an ok christmas except I had a HUGE pain in my side. When I got back to the hospital I saw my mum to the door and then got ready for bed. I was fine except I had a canular in my foot because my veins were knackered! I went to bed with oxygen because I had been for the last week, and then about 3 in the morning I woke up suddenly gasping for air! I couldn't breathe at all, they had to put my oxygen up to 8 litres but it still wasn't enough, so they took my down to HDU again, where I just slumped myself over the side of the bed struggling for air. I was like this for a week, they tired everything, they tried, the bird, the nippy and higher oxygen, all of which help breathe for you, but none were working. I was tired, I couldn't move, I begged and begged them to put me on a ventilator until eventually they decided it was the only way I had any chance of survival.  so, they wheeled me into intensive care and all I remember was them telling me that I was going to be put to sleep, all I kept saying was thank you, thank you so much. The next time I rememeber was when I awoke, just before they took my ventilator out, I was all puffy and had to be put on kidney Dialis because my kidneys had stopped working. I was so cold so they had to but a bear hugger on me (basically an electric blanket) I was on the ventilator for three weeks and no one knew if I was going to be able to come off or not. I had to be on Dialis for a further week because my kidneys just weren't playing ball! This time was worse than my transplant though because I was literally so weak I couldnt even move my arms. I had to gradually move them and when I did they didn't waste any time in trying to get me to move! I had to go in a hoist to be strapped into this machine called an arjo, it basically helps you stand up again. I eventually got moved to the normal ward where I still had to pratice on the arjo and then I got to go on standing by myself. I then took very small steps and I was so prund that I cried! aha what a whip! I'm so greatful for my physcios and the nurses! they put up with all my bad moods! and I'm so greatful for my family and friends for never ever giving up on me and the fact that they always believed in me!

My liver and pancreas transplant

The night I got that phone call was the most scariest night of my life. It was 0:45 in the morning and I was half asleep, you no when you are alssep and you hear noises but you think they are in the dream? that was what it felt like. I heard a ringing noise, I didn't think anything of it because I was still sleepy, then I heard voices, I realized that this was my mum talking, so I sat up in bed and listened to what she was saying. I heard the name of my transplant co-ordinator and I instantly realized that this was the phone call.. I thought I was going to be sick! next thing was, my mum came into my room and started to cry, she was so happy! The paramedics said that they were going to be with us within 15mins.. so my mum called my auntie and uncle and my cousin and they came round! all of them were very nervous and then you got me, bouncing around the room shouting that I'm going to be better! next thing I knew, the ambulance was here and I went in a blue light to Kings college. We got there and I had to do some final tests, I had to go down to xray to make sure my lungs were fit enough to go through with the transplant and I had to have some blood tests to make sure my kidneys were stable. We then got shown to a bed where we waited until half two in the afternoon for them to finally take me down to surgery. All I remember from this was that two anesatists came up and gave me some pre med (this basically makes you forget things so you don't remember them when you come round) and the bars on my bed went up, thats it, I dont remember anything else. The next time I rememeber was when I started to come around, I was in inensive care, and still on a ventilator.. it was such a weird feeling because you wanted to breathe but a machine was doing it for you! I drifted in and out of conciousness for a few days and evenually was able to no where I was properly! They had to ween off my drugs before I could be taken of the ventilator..the holusinations I got were horrible..I dreamt that the male nurse looking after me was a mass muderer, I dreamt that the doctors had 8 legs, I had leaches going up my arms, centipeads crawling in and out of my skin.. it was awful! eventually I was awake enough to be taken off the ventilator..but obviously me being me, I couldn't wait and I threw it up instead! that was horrible, that shock you get when your breathing on your own for the first time in a week or two is weird! I was on oxygen for a couple of days and then I got moved to HDU this is where I started to walk again and regain my strength. I went up to the ward but I couldn't keep any of my food down, not even a bit of water! so I had to go for a CT scan and it showed that I had a abses in my bowl from where they put the pancreas in and it leaked! so I had to go down to surgery again and have it removed! they had to open up my scar again! luckily I didn't have to go into intensive care again, i went into HDU because my lungs were strong enough to handle it. Then I went back up to the ward, I was very skinny by this time because I hadn't eaten for 8 weeks, I had to learn to eat again, and every mouthful I threw up, I had to have a nasergastric tube put in to go on night feeds. This was awful because the feed would go in and then I'd throw it up in the morning. It was trial and error basically because I had to expand my stomach again. I eventually put on enough weight to go home but I had to be on night feed for two weeks and then have my tube taken out for prom!

where it all goes down hill!

so when I got admitted when I was 14 I also had an endoscopy. This discoved that I had verrisis on my liver (small veins that are enlarged) and they were grade three (four being the highest) I had always had scaring on my liver, even when I was a young child, but this was the first time that my liver had arrisen in my health issues. After this I didn't get admitted to hospital until feb 2010 and this is where it started going down hill. I got admitted with chronic stomach pains and my belly was so bloated that I could barely move. The doctors thought it was typical Cf consipation and I had to be taken to kings college hospital for strong meds that my local couldnt give me because it was xray med. Its called gastrographine (some of my fellow cfers may of heard about this) it tastes like licurish. Its absolutely gross! I had a liver check up while I was there and everything seemed stable. Then in May 2010 my sypmtoms started getting worse! one day I awoke with very swollen ankles and a very puffy belly! i got rushed to hospital and my doctor told me I had a lot of fluid retension in my body, so I got put on water tablets. I became very anemic at this time and I had to have a couple of blood transfusions. While I had my stay in hosptial I had an appointment with Kings liver team...my doctor had refered me sooner because my signs were getting worse. Nothing could of prepared me for what he was about to tell me... "Grace I think its about time we consider a liver transplant" they were his exact words and they still ring in my head even today. It wasn't for another 3 months until I got my assessment to see if I was fit enough to go on the list. By this time by symptoms had got a lot worse! I was getting very bad nose bleeds that lasted about an hour, I was very tired and I was very anemic too! I also had to be tested for internal bleeding because I had black stools. This was a very scary time for me and I wouldn't want it to happen to anyone. I eventually got on this list! and I waited 7 months exactly for my transplant! In those 7 months I became very tired, I only went to school part time, I had constant blood transfusions and I started to go yellow.  I had a double transplant, liver and pancreas. To control my Diabetes because I didn't have any control over it.
what happen in my transplant will be another post...

My early years

So.. where to begin

I got diagnosed with Cf when I was 2 and a half.. of course I dont remember it as I was very young! my mum diagnosed me because our hospital falied to pick up the signs and it wasn't until my mum read an article in a magazine that she realized that I might have Cf, as many people back then, and still dont really no what Cf is. I never got admitted to hospital until I was five and that wasnt because of my lungs, that was because I had developed Diabetes. You can get Cf related Diabetes but mine wasn't, it was full blown type one Diabetes. It was a bit strange for me because I had never really experienced hospital life before so I didnt really understand why I was being admitted. Before I got Diabetes, I used to think that Cf wasn't so bad because I could eat absoultely anything I wanted too! whereas all my friends at pre school had healthy lunches, I used to have chocolate and things like this! I thought it was great to begin with, I thought that because I had never been in hospital, only for my clinics that, that was all it was ever gonig to be! It wasn't until I got Diabetes that I suddenly got a culture shock! Luckly after being admitted for Diabetes, I didnt get admitted for my chest until I was 9, I got admitted for other things, like tummy problems and consipation (other typical problems you suffer from with cf because it affects your diagestive system) when I first had a long line put in, I was absoultely terrified. They had to give me gas and air because the pain was to much! I then got admitted again the following year in the summer which was hard because I had to miss my holiday with the family, we were supposed to go away to spain but I couldn't because I caught a chest infection. I also had to be isolated in a seperate room because this was the first real time that I had come across cross infection. I absoultely hated it, I hated being taken away from the other children, I didnt undertand it! all I wanted to do was play! The next time I got admitted was 2009 when I was 14! that was a short two week stay for Ivs.
Thats my early years...

Introduction

So I havent really written a blog before.. so I might not be very good at it.. so here it goes :L

My name is Grace Katie Rosam, I'm 18 years old and I have Cysitic Fibrosis, but that isn't all I am! Yes, I have Cystic Fibrosis but I try not to let it control my life. In other posts I will tell you about my every day life with Cf and my early years, but for now I'll tell you a little bit about who I am once you look past the Cf.
I am a sister to a beautiful girl, shes nearly a year old now and I couldn't be more proud. She really is a little me! She is the spitting image of me and has the same mannor! of course she doesnt have Cf which I am very greatful for. My friends mean the world to me and have helped me through a lot of things, without them I wouldn't be here today! I enjoy all kinds of music, Especially indie/rock! I love dubstep too! that might come across as either very chavy or a bit emo..I'm hoping the emo bit :L
I fall for people very easy and its hard to let them see what I have to go through but everyone who I have been with has always been very supportive of my illnesses and never has walked away just because of my Cf. I have a golden lab, he's seven this year and he is my best friend :L I absolutely adore him! I am a Harry Potter freak and I have read all the book and I have the Box set! I also love the supernatural things like the paranormal and which craft.. I love shows like the vampire diaries and once apon a time!
I am currently at college studying health and social care, extended diploma level three. I want to be a nurse! people think im crazy because I always spend a lot of time in hospitals! well never stop aiming high, epsecially with a condition like cf, aiming high keeps you going.
My favourite food to eat.. hmm I dont actually have one..but i love bacon! :L
I used to be an army cadet.. but i had to give that up for health reasons (not because I couldnt breathe, I'll explain in another post)
most of all I enjoy spending time with my family because they are the most funniest people on the entire earth! especially when the get a bit merry! aha shhh!
thats about it really...
hope it wasnt to boring!