A bit of a catch up

Hey guys, 

Sorry I haven't written in a while, I've had so much going on and so much to update you with! 

So I'll start with my kidneys, I went into hospital 6 weeks ago due to my kidney function dropping. I was meant to stay in two nights just to flush them through but I ended up staying in two weeks because I had a horrific headache and had a fit and had to be ventilated and put on the kidney dialisys machine. My kidney function has stabilised for now but hey! You never know with me! Aha. 

Next update is on surgery, well I have to have surgery to untwist my stomach because it's twisted on its side and attached to liver. So that's being sorted and they are going to sort out my reflux and the same time! I have to go back in December to decide when surgery is best because of my kidneys. 

Next update is about uni and college, well I still want to be a nurse and have been looking at different uni's. I really want to go to kings college! College are helping me do my ucas and personal statement. So excited i just want to go now and get away from here! 

The last update is about me, I've shaped into a really good person now, my lungs are healthy and I'm quite fit. So I've even able to go out to places and chill with my mates. I'm going to a Halloween thing at my local nightclub tomorrow are a sexy school girl zombie! I've been making my outfit today and I am covered in paint hehe. I really have the best friends in the world who understand me and what I go through. 

Thanks to everyone for you constant support. 

Grace xx 

Going to Kings to talk about being a young mentor.

Hey guys,

So today I am off to Kings to talk about what is going to happen on a young peoples liver disease meeting. Last year I attended this as a participant but this year I am going to be a young mentor because I am nearly 19 and have been through transplant. The day is basically going to be about how liver disease affects young peoples lives and different ways of coping with it, also talking about possible transplantation in the future. I think its great that they have chosen me as a young mentor because I feel like I am giving something back to my donor for giving me the gift of a second chance at life. I am so grateful to still be here and to be able to say that I can now help young people going through the same thing. People need to be more aware of what the power of organ donation can do and I am glad that I can help just that tiny bit :)

Thanks for reading

Grace xx

Update on surgery

Hey blog readers,

So you know I told you I needed a pacemaker for my stomach because it doesn't empty properly? Well. They diagnosed that completely wrong! I went to the hospital a few weeks ago and had a bearium meal. The results showed that I have something called gastric volvulus. It's basically where your stomach has twisted 180 degrees on its side. The symptoms are, a swollen stomach, terrible stomach pain and vomiting....well I have been showing these signs for more than a year and no one has paid any attention to me. So I went for another appointment to discuss surgery. My transplant team are involved now because they no me and no what they done inside me. It's major surgery and I will probably be in hospital five weeks. It's thrown off my college course but if they do it now I should be able to catch up. I'm just really annoyed to be honest. Not at surgery but at my doctor for not picking it up sooner. It can be very dangerous and you can die from it if it's not treated and depending how bad the volvulus is.

Thanks for reading, 

Grace xx

Cf will have to put up a good fight first.

Hey guys, 

So I've been pretty down for quite a while now and I'm really fed up of it, so I thought I needed to snap out of it before it really starts to get me down. I've realised that it wasn't the cf that was making me down, it was my mental attitude. So, it stops now! I have to try and carry on, not just for me but for all the people who have died and didn't need too. I have to be strong and pick myself up because I have so much more fight in me left. I will be wife, mum and grand mum one day, and I have to believe it.

Thanks for reading x 

No sign of getting much better.

Hey guys, 

Well I still haven't heard from the hospital when I'm going to be having my surgery. I know I'm going to have it, I just haven't got a date yet. I'm really down at the moment because of so many things, mainly to do with my stomach but also because another CFer has died. It's so hard and it doesn't get any easier. It just dawns on you more. I hope that he is a peace now and that he didn't die in pain. Things with my lungs are okay at the moment. Going away did them a lot of good! I hate being in such a depressing mood because normally I'm a very positive person but lately I've been really struggling to find the inner strength and to pick myself up of the floor. I just wanna say how much I appreciate my friends always being there for me and also a few CFers that I'm quite close with. Including Martin and Vicki. The most loveliest CFers I've ever spoken too. I hope my mood can change soon because I'm fed up of feeling crap. 

Thanks for reading, 

Grace xx 

Everything has just become a mess.

Hi my blog readers, sorry I haven't written in a while, truth is I've been taking some time out from blogging and taking some time to deal with a few factors in my life. 

My cystic fibrosis has given me a bad hand these past few months and it doesn't seem to be getting any better. I will start with my stomach, turns out I don't need a pacemaker because they found out that my stomach is twisted. Meaning its the wrong way round, why they haven't picked this up before I don't know. It means I'm now facing major surgery again and truth is I'm absolutely petrified because of my previous experiences. Also my lung function is slipping and it's bothering me quite a lot because its not my fault it's the pressure of my swollen stomach causing it to drop. Cystic fibrosis is really testing me at the moment because of this but also because 3 beautiful people have lost their  lives due to cf in the last few weeks. It's affecting me emotionally because I'm struggling with coming to terms with my "fate" and it's also affecting my personal relationships with people, so overall it's a bit of a mess and I feel depressed 80% of the time. Well done cf you've won this round. 

Grace x

update on the CF side and some personal thinking going on!

Hey my lovely blog readers, I'm sorry I haven't updated in a little bit, truth is there hasn't been much to update on! until now of course. So my Cf has been giving me a lot of trouble recently, mainly to do with my stomach! I've had a real hard time with coping with pain! my mum had to take me to an emergency ward appointment because I've been in so much pain but we didn't get anywhere and I am still waiting on a date for my pacemaker! its just bad care to be honest, I know it isn't life threatening but its putting pressure on my lungs so my lung function is down a bit! my Cf team are not happy with the care I've been given by the stomach doctor so they are looking to move me to a different doctor all together. My chest has been ok but I now have a cold and I am loosing my hearing a bit so of course a cough has developed! got some oral antibiotics for it so it should go! so thats everything on the Cf side, now for my personal thoughts and feelings.

Well, I have been struggling to come to terms with my "fate" and what the future actually holds for me. I've lost a lot of friends to Cf and some of my other friends are on the list for transplant of the lungs, this has really been a horrible thing for me because when I was a kid I thought Cf was great because I got to eat snacks in class and drink mini coke in class too! I got to eat what I wanted and when I wanted, its only been as I got older its become this horrible illness that the affects of it are fatal. Going through transplant myself made me realise that I need to preserve my current state for as long as possible because I am forever hopeful of a cure! I would love to one day be able to walk up to another Cfer and say "well done mate, we passed, we fought and we won the battle" that is my ultimate dream, but the reality is far different. I hope and pray I never have to go through lung transplantation because someone else deserves those lungs more than me because I have already had my second chance at life. I admire everyone who goes through and sees the devastating affects of Cf and still manages to have a smile on their face. Every Cfer is such a strong minded person and their families are the strongest people, I know my family are! they have been there through everything and always came to the hospital everyday!

I hope my Cf friends are well and always keep fighting, never give up!

thanks for reading :)

Grace xx
 

Peoples attitudes to organ donation

Hey guys, I know I haven't written in a while, truth is I haven't really had the time too! college work is literally taking over my life and so is work placement and sorting out open day events for uni.
Quick update on the CF side of things, my lungs, liver and pancreas are all doing good, its just my stomach that being a little bugger at the minute! I have a swollen belly which makes me look like I'm pregnant, The stomach doctor is trying to sort it out so hopefully it will all be fixed soon.
The main reason why I am writing today is because last night on a social networking site I came into an argument with a woman who's attitude literally stunk towards people with CF having the right to get a pancreas transplant, I believe she had Diabetes and was telling me how I have denied someone a "cure" for Diabetes by receiving my pancreas, I also had Diabetes type one as well as CF and it has fixed my Diabetes and pancreatic insufficiency, meaning I don't have to take Creon. She tried to tell me that she would take my pancreas away from me because I was taking it away from someone else. In America they haven't registered pancreas transplants for Diabetics and she had a go at me because my pancreas was wasted on me. For one, I HAD Diabetes and two I also have CF, she needs to try living with both illnesses put together and get some education on CF. Her attitude towards CF and people needing life saving transplants stunk. She said that the pancreas should of gone to someone as a "cure" instead of a life prolonger. Well ACTUALLY it isnt a cure, I got told that I always have Diabetes but my symptoms are relived and it can come back! So clearly she is mistaken on that too! Anyone who is willing to take the life of another just for there own needs is disgusting, she is shallow minded and needs to clearly get out of her bubble.
People can do amazing things with CF and new organs will give them the life that they need, anyone who needs an organ is deserving of a second chance of living and thoroughly deserves it after being through the process of transplantation.

Thanks you to my friends of Cfaware for backing me up, if you are still uncertain on what cf is, go to @cfaware on twitter and they can give you all the information you need!

Grace :) xx

Completely un-cf related but I thought I should blog it anyway.

Hey guys!

My blog update today is gonna be completely un-cf related but I want to blog it because it is important to me and the way I am feeling. First of all I would like to say that most things on the cf side of things are ok apart from my stomach. The bo-tox really hasn't helped and it has been causing me a lot of pain but apart from that everything else is hunky dory.

So my blog today is gonna be about love and how it has changed me perception on life and life surroundings.

Love is a difficult subject for me because I genuinely find it hard to trust people and let them into my life because I have been hurt so many times I cant actually count on one hand. Of course I am not completely innocent and I am sure some of the people that have come into my life wish they hadn't. I used to let people into my life and trust them straight away because I didn't know that they were gonna hurt me. I've been cheated on and I can tell you now it absolutely kills you. It makes you think that you are worthless and that you aren't good enough for anyone because they obviously found someone better. At the moment I really don't want a relationship, not because I wouldn't want someone to be there and to have a laugh with I just don't think I can cope with getting hurt again. Sometimes I think that people go off me because they realise what my health issues entail and can't cope with how much time and effort it consumes out of my life, I know I shouldn't think like that because I am sure that isn't the case but I can't help it sometimes. When I love someone I don't ever stop because that way my heart doesn't hurt but it can be hard especially when your feelings come back for someone. When you love someone with all your heart and soul that feeling will never disappear and they can hurt you a million times but your love for them will never change. I guess that is why I find it hard to let people in because I am always worried that they will never feel the same for me as I do for them. My relationship I had when I was going through my transplant and when I was ventilated was amazing, best relationship I have ever had because we understood each other and we got on so well. I can never take away what he done for me because he saved me and got me through some pretty horrendous times. I guess it just faded like most things do but my feelings for him will never change. To be honest I am surprised he stuck around, most guys when they see the slightest signs of danger bugger off because they are scared to face up to it. I guess that is stereotyping a little but its the experiences I have had. I am glad for those memories and I am glad that someone was there for me when I really needed it but I still can't bring myself to have a relationship in case that sort of hurt and sickness happens again.

Sorry for not posting about my cf but I wanted you guys to understand a bit about me.

Grace xx

Things need to change!

Hey guys!

My last post was pretty much me being down in the dumps again! well, things need to start to change because I am absolutely fed up of feeling rubbish, my lungs and my liver and pancreas are all working fine and that is something I am grateful for everyday of my life! I am glad that I can still run and walk everywhere and that I have come within a few inches of death and have walked through the other side. It has given me a great perspective on my life and what the word "life" actually means, yes I am going to have bad times and times when I am in pain because that is what comes with the nature of my illness and I have accepted that, what I wont and refuse to accept is the "end stage" of my illness, I really hate it how they call it that because its the persons choice whether or not they want to give up or not, its up to them if they want to hang on to get that call for transplantation. People are scared of CF because of what it can bring, what it has brought. I am not scared of CF because I know I will beat it. Yes that's right, I WILL beat it, not just for me but for all the lives that didn't need to be taken (Brian) I will fight with what ever it takes to here the words "cystic fibrosis has been cured" just you watch me CF, you will never have me, or define me. I am an individual, your just one aspect of me. I will run this marathon to prove that I can reach the stars, to prove that just because I am CF does not mean I am not able to do things on a BIG scale.

All I have to say is... CF....bring it on.

p.s if you want to sponsor me here is my money giving page.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=GraceRosam&pageUrl=3


Grace xxx

A bit up and down but I'll get there

Hey guys!

So my last post was about my annual review and how it went really well! It has been a bit up and down since then because I keep getting terrible mood swings..not just ahh I'm so angry or ahh I'm so upset..proper full blown I hate the world mood swings.. I personally think its because I am still not over the death of my friend and I still can hear due to fluid behind my ear drums..so it has all built up over the last couple of weeks, going to the hospital tomorrow isn't helping the situation either because I may have to have another blood transfusion because my blood count is low..yet again! So its all a bit blehh right now. Bless my mum trying to make me feel better by buying me a LOAD of chocolate... it can't be easy on her either watching me suffer emotionally from my CF.. this seriously has been the longest I have been struggling for though because normally I pick myself up and dust myself down pretty well! I'm seeing Anna (my physiologist) next week which should help a lot, she got me through my transplant and when I had to go on a ventilator so this should be easy :L well..I'm hoping it to be easy.

I want to talk about my friends now.. I actually have no idea how they put up with me! I love them all so much... I am going to mention a few names and I hope I don't get flagged for it! My conversations with my friend Andy are just to funny! He always knows how to make me laugh! although I do crack myself up too! My friend Kira has really supported me after the loss of my friend Brian! can't thank her enough really, she picked me up in a really dark moment! My friend Linsay who is also Kiras sister..she always knows how to get me laughing! and her birthday was a gooood day! (nandos and hide and seek in Ikea) All my other friends are amazing too but these three really picked me up after the loss of Brian.

I'd also like to say that my friend Andy is also running the half marathon and if you would like to sponcer him then please let me know :)

Grace xx

annual review

My annual review went very well actually! waaaaay better than I expected! My lung function is practically normal for my height and age! normal meaning someone without cf, so I am pretty pleased about that! Also my liver is holding out good as well and so is my pancreas! which is amazing. It was a long day because I had a liver appointment after my annual review because they like to combine appointments so I don't keep having to go back to the hospital all the time. They are happy with my weight but I need to slow down on all the fat things I eat because I am getting a chunky monkey! I dont absorb vitimin D very well so I am new tablets for that and so far they seem to be doing the trick! My bones are still weak but they are not sure whether its just soft bones or brittle bones because I am still quite young! hopefully its just soft bones because I really dont wanna have to deal with brittle bones too! I have my follow up appointment in a few weeks time so I will let you know the results of my chest xray and glucose tollerance test then!

I am very pleased with the overall outcome of my annual review and it has given me a much needed boost! Time to carry on kicking Cfs butt and get into gear for my half marathon!

thanks for reading

Grace xx

Positive things because I've been negative for a while.

Today I'm going to write about all the good things in my life because recently I've been so negative.
Ok, let's start with my beautiful sister! She's my world! I love her so much! She looks so much like me and she's a little cutie! She's one years of age and already has such a personality on her!
Next thing is my friends and my twitter cf family!! My friends are amazing! They picked me up a lot this week after loosing my friend Brian. Couldn't live without them! My twitter cf family are also amazing! Such a strong bunch of people and they always help you out when you need it! They also picked me up when I lost Brian.
The next thing is my college course. I really love studying health and social care because I really want to be a nurse and I find the overall subject interesting!
The next thing is my lung function! My lung function really isn't that bad compared to some people's, it currently lies at 76% and for an 18 year old that's not bad!
The final thing is my close relationship with my family. Without them I wouldn't be here today and I love them to bits for all there support!

Thanks for reading!

Grace xx

Such a sad week.

Three lives have been lost this week to this poxy illness. I have lost my good friend Brian. He helped me through so much and now he's gone. I can't tell you enough how important organ donation is because his life didn't have to end. I am really struggling recently to pull myself round from all this bad news. I know this sounds so selfish but all these deaths due to cf have made me think about my life and what may happen in the future. I don't want to die :'( and I'm sure Brian didn't either. He really inspired me because he was on the transplant list for lungs, heart and liver. He never got them in time..I'm so grateful to whoever gave me my organs. It makes me value my life so much. I just hope that Brian finds peace and that he's breathing easy now. Such a lovely guy! My thoughts are with his wife and family. He's gonna be greatly missed.


Sorry for the depressing blog but I need to sort out things in my mind.
Rest in peace Brian and the other two cfers who passed. God bless.

Grace xx

My thoughts and feelings over the last two weeks

Hey guys!

As you read in my last post that I have been struggling a little with my CF. Well, I thought I would write about how I've been feeling because I know some of my CF family can either relate or have helped me through these two weeks.

Well..I'm not going to sugar coat it..I've struggled and I've been in horrible pain. Most of my blog is quite positive towards my CF and how I deal with it..well I'm going to warn you that this post isn't going to be positive..its gonna be harsh..reality..and most of all very personal so if you don't want to read about how I have suffered then I suggest you stop reading now.

So these last two weeks I have been on such a huge downer. Loads and loads of things have been going through my head..none of which are good things. I will start with my attitude to friends. My friends have always been amazing when it comes to my CF, always there for me and I love them for that. But I have really pushed everyone away these past two weeks because what is the point of putting your friends through the stress about worrying about you? or the stress of hanging round with the "sick" girl, now I know that my friends have never thought that but I cant help but think it. Then I shall move onto relationships..I had an amazing relationship for nearly two years and he was there for me throughout my transplant and when I had to go on a ventilator for my breathing, I will not take that away from him because I owe him my life for that but right now I cant be in a relationship, not because I don't want to be but because I don't want to put anyone through the emotional roller-coaster that is my life. I don't want them to watch me suffer like my family do, that is hard enough for me to deal with. I hate seeing the look on my mums face every time I get sick..it rips me apart. I never tell her that because she is my mum and she loves me very much. I have to be "brave" around my family and friends because I hate being the one who is seen as weak, seen as vulnerable. I cant deal with that. So when I'm sick I put on a shell and get on with it..that is all I've ever known to do. I don't want my partner to see me without any make up or looking rough on a hospital bed because to me a girlfriend is gorgeous..well..when I'm sick I am far from that!
This bit is going to hurt most of you so please stop reading if your already nearly in tears.

The last part of my feelings these two weeks have made me over think and I've come to the conclusion that I am a ticking death sentence. I don't ever think this when I am well but when I am down I am really down. CF shortens your life..so in theory it is a death sentence. Not a death sentence that completely punishes you because of course you can have good times and be happy but when your sick with CF you are really sick..any person who doesn't have CF and gets a cold or a cough..it will go in a week or two...mine goes in about a month or more. Sometimes it is so hard to deal with but I get on with it because thats what I do. I survive. I'm so grateful for my twitter CF family, they have spoken to me and got me through and urged me to carry on.. Thank god for social networking!

Sorry for such a depressing blog but I thought you ought to know how I feel when I get sick!

Thanks for reading!

Grace xx

Sorry I haven't updated in a while (cf side of things)

Hello guys! 

Sorry I haven't updated in a while! a lot has happened so I haven't really had the chance. So since I last updated I've had a really nasty ear infection! both ears have suffered but my right ear the most! it was soooo painful. I couldn't really stand up without feeling all dizzy! My chest has been playing up too! I really hate winter because it messes up my chest so much! winter makes me feel so rubbish and drained!  Also I've had my bo-tox operation. The operation went ok! I was very scared about having the general sedation because the last time I got put to sleep I woke up and I couldn't breathe and I had to spend 3 weeks on a ventilator..so I was a bit nervous, understandably. I woke up and I was fine though! I was so relieved. A few hours later I was allowed to go home..BUT as soon as I arrived home, about ten minutes later we got a call from the ward to say that my haemoglobin level was low (blood count) and I needed an emergency blood transfusion. So we had to drive all the way back to London to the hospital and for me to stay the night, I felt a lot better after I had it but I was annoyed that they didn't spot it before. Since then my chest hasn't been brilliant but I went to the gym today and ran four miles, so I cant really complain ;) aha. These last two weeks have been really hard on me and I've been at my lowest point for ages. Of course I will never give up but I really have felt like its been one thing after the other recently. But I will carry on because its what I do best! Fight. 

Thanks for reading guys :) 

Grace xx

Update on CF side of things.

Well it's all starting to go down hill again! I currently have a really nasty cold and its turning into a nasty cough too! Just brilliant to be honest! Having my immune system compromised is causing me to have really rough winters! My chest currently feels like a lorry has just run over it and then back over it again! and I am finding it hard to breathe out of my nose :( kinda sucks! If it doesn't get any better I might have to go in hospital! The cf nurse is going to do my lung function at home and hopefully suggest something better than my orals I am currently having! I thought they were working but obviously they aren't!

Apart from my cold and cough I've actually been really well. Apart from my stomach, I'm having Bot-ox to relax my stomach muscle on the 21 of March because my stomach isn't emptying properly. Bot-ox will help the muscle relax and so I wont feel so full up all the time and wont have horrific stomach pains. I was originally going to have a pacemaker put in my stomach but they are trying other treatments first because of the nature of the operation and because I have had transplant. The Bot-ox wont last forever so I may have to have the pacemaker put in at a later date!

I have been transferred to the adult side now but for this one operation I still get to stay on the Kids side! I love Rays Of Sunshine Ward! because that is the ward that got me nice and fit again after transplant, and the actual ward is nice and modern and the staff are lovely! This really will be the last time I stay on the kids side :( I HATE GROWING UP!!!!! D:

Thanks for reading

Graciee x

Fittness Levels

recently I have started taking up the gym and running all as part of my training for the half marathon!
It has actually not been to bad, when I first started I could only walk for about 10 mins and then have to stop due to muscle ache and breathlessness but now both of those things have gone and I can run for more than 30 mins non stop!
It really does show that physically activity is good for you! I wish I took up the gym and running sooner to be honest, even though I have Cf the difference it makes in being able to take a long slow deep breath is actually amazing! I love that feeling of not waking up with a morning cough or a tickle in my throat! I reconmend exercise for anyone, but for my CFers out there especially! Start young, when I was younger my mum used to take me to lots of things, like swimming, guides, army cadets, it maintains your lung funtion for longer and you feel great that you have acheived something at the end of it!

thanks again for reading :)
Grace x

Haven't updated in a while!

So not much has been happening with my cf to be honest! Still the same apart from I have a bit of a cough now because I have spent the weekend at the seaside and the sea air makes me chesty!
I have just been living my life with a LOAD of parties!! As its half term I have been extra busy with social gatherings! I haven't had much sleep so I'm starting to feel that and so is my chest!! :( but hopefully it won't last long!
Thank you again for all of your reads!very very grateful :) x

my virgin money giving page

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=GraceRosam&pageUrl=3

This is my page to donate to CF please give what you can because every little helps!! :)

a little bit more positive!

Hey guys! soo... umm I kind of got into the half marathon!!!! :D

I am literally so excited!! Finally going to show the world that just because I have Cf it doesn't mean I can't do things!! some of you might think I am a little crazy, I mean 13 miles is a LOT but luckily my Cf isn't that bad, well not in the lungs side anyways! which is why I entered this thing in the first place!!
I will be setting up a Virgin just giving page so if anyone wants to sponser me then I would be very very very greatful!!
over the last few days I have come to realize that I shouldn't look so far ahead into to future and just live day by day, that way you don't expect to much. I no the marathon is not until october but come on! I got to look forward to something ;) and plus I have to train for it. I went to the gym on thursday and walked home from purley (which is about half way between home and college) woop woop!
Having that transplant was literally the best thing that has ever happend to me! I have so much more energy now!!
If anyone wants to come and watch, let me know ;) I NEED ALL THE SUPPORT I CAN GET

Thanks for reading :)

Grace x

The point where I'm at now

Ok so basically I wanted to get this out there...
for those of you that have read my blog and seen my experiences you have come to realize that I am quite strong minded...well recently that strong minded person has been struck down.. maybe its because I have a really bad cold and a nasty cough but that doesn't stop my mind from ticking over. Recently I have been thinking a lot more about my CF and what the future holds for me..well the truth is, I dont actually know. I've read blogs and seen stories recently that have made me stop and think twice about who and what I am, for example I take the little things I do everyday for granted like go to college or work placement without a care in the world or a realization that one day I may not be able to do that...I've never really stopped and thought about it because I've always thought that I would pull through and always be stronger because thats all I've ever done. It's only recently hit me that Cystic Fibrosis is a degenerative illness (I don't like using the word desease, because im not contagious) and that one day I may be perminately really sick! I'm actually scared, like really scared about this...as a matter of fact it worries me everyday of my life. Not only does it affect me, it affects my friends and family. They are the ones who have to sit there and watch me go through so much pain and they can't do anything about it! it hurts me so much :/ Its very hard for me when I get really sick because all I want to do is sit there and cry, obviously I dont, because I hate showing my emotions about my illness infront of people in case I upset them or they blame themselves for what I go through, and that is the last thing I ever want to happen. It's no ones fault that I have Cystic Fibrosis, recently I've read that people blame their parents...I think that is totally unfair and wrong in my personal opinion. It's not their fault that they are carriers, most of the parents are like my parents, they didn't even no they were carriers! So why blame them? I'd hate to think that my mum or dad blames themself for me! Now that would really break my heart! but that doesn't change the fact that when I'm sick I hate people seeing me so vunerable and weak, it just makes me feel very uncomfortable.


Thanks for reading :)
P.s Sorry for the rant x

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!