"I can't breathe"

So the last few days have been different. On Wednesday I had to go to a&e because I was unable to breathe. Something like this has never happened to me before , I have exspirenced being poorly and my lungs feeling crap and making everything harder for me. But never to the point where I can't physically breathe. It was scary and such a relife when I could breathe again. I'm not 100% sure at the moment as to why I am feeling like this and why this all happened. I obviously have grown something, or something is going on in my lungs. I also have sinusitis at the moment along with polopes , so breathing threw my nose isn't easy anyways (adding to the stress of it all) as I write this I am at my cf hospital the royal brompton. I have just had my bloods done and we will see what the rest of my tests and team have to say ......

So lung function was 60% , abit of a drop  from my last blow , 73% , but the docs where not too flustered and didn't think I needed Ivs. So they gave me orals and a new inhaler just incase I can't breathe again and off i popped back home. Its been a few days since I was at the hospital and I am starting to feel more human , it's just showen me that I really do not want to feel like that again. And it scared me to think possibly that could one day be my "normal" , let's hope not & I can't think like that. So onwards and upwards , a few days ago I couldn't even wear a bra as it just closed my chest up to much, so now I have one on im feeling more classy haha x 

Christmas countdown.

So it is the 20th December, 5 days untill christmas. I have a cold at the moment so been feeling abit crappy. I am starting to feel abit better , but my cough is still there. It's embarrassing being out and feeling like everyone is looking at you. I am off to London today and I'm looking forward to it , but also abit nervous as I am coughing still. I know it's silly, I shouldn't be scared or embarrassed to cough but I don't like people looking at me like I am going to make everyone I'll. I don't like being looked at as the "sick" one. Any who I am looking forward to Christmas , hoping I feel better buy then. I have a few more present to wrap , the problem with being organised is that all my presents where bought ages ago. But it has just ment I keep seeing other things and buying them! What isit about Christmas that makes you go "oohhh go on they deserve it" maybe I will try to be less organised next year x just a little bit.

Winter is here.

The cold air is really getting to my lungs at the moment. I ran for a bus earlier and I was shocked how long it took for me to get my breathing back to normal. It's times like this I wish I could drive. I am 21 years of age but I have never done a driving lesson. I can't afford driving lessons so how could I possible afford a car and insurence !? Sucks butt !!  My sinuses are stressing me ever more out in the weather (you want to see what comes out of my nose) gross ! , better out then in lol. I have my sinus appointment in the new year in January. How strange , the new year. That felt strange to say ha. I can't belive how quickly this year has gone. I have nearly done all my Christmas shopping :) , next stage is the wrapping , I hateeeeee wrapping presents , if I can get away of not wrapping a present I will (just stick it in a christmas bag and sellotape it up) ha. 

This Christmas I am going to my aunties which I am excited about. To be round family. I'm kind of gutted I most likely won't see jack on Christmas Day, he will be with his family understandably , but I look forward to the day we have our own christmas and our own family with traditions 😊

Overthinking & ovulating.

So if you are a guy you may not want to be reading this , it's all about lady things. Ha.

This has been the first month of my trying out my ovulating kit. I have a phone on my app that told me when I should start testing and when I should be ovulating. (But because of my polocystic ovaries I thought i wasn't going to ovulate at all, & if I did it wouldn't be when the app said I was going to ovulate) 

To cut along story short, I am ovulating , i ovulated when the app predicted (give or take a day) and to top it off I started my period the week it predicted (again give or take a few days) but I am so excited. For the first time in 21 years I have had a "normal" cycle , and I found out I do indeed ovulate. (The way I feel you would swear I have just been told I am a super hero) ha. But I am relived. It's another step in the right direction. I am going to continue to write down my cycles and when I ovulate. And hopefully go back to the gyne in 6-8 months and show him my findings :) , at the moment we are not proactively trying for a baby. We want to move out and hopefully get married. Then that can begin. 

At the moment my cf is steady , I am working hard on trying to keep my lung function in the high 70s and even hit the 80s. That would be amazing. It's horrible to feel under presure with situations in life just because of my cf. But for now I am keeping possitve and keeping my button off the fast forward button! 

Trials and tribulations.

So the last month i have been doing a trial for a anti-inflamatry drug for my lungs. While i was doing the trial i had to stay in hospital for abit , which was a blessing really because i was suffering from really bad migraines, after ct scans i have been told i have sinusitis. They said my sinuses are really blocked but because i was on the trial there wasn't much i could do at that point. They gave me sinus rinse and a nasal spray which has helped the headaches abit. But i am hopefully going to have surgery   so they can unblock it all.

I thought having to stay in hospital for abit would be good for me , as i haven't had ivs in about 5 years now (and never staying in the adult side since transitioning) i was positive it would make me less nervous if i did have to go in for ivs soon. But if anything i think has made me more nervous , since my last ivs i have had my port removed and my veins are so so terrible. This time while i was in hospital they had to take bloods a lot so they put a canular in , but because my veins are so shocking they only lasted a few hours and then stopped working. So i have been told if i need ivs again in the near future I'm most likely going to have a port re fitted. I was climbing the walls this time in hospital and i was only in for three days , then home for a few days then back. I just kept thinking how do my friends do 2-3 weeks.

Because of the trial i have to be using two forms of contraception for up to three months after the end of the trial. I have also been under the gyene for awhile. 

We have stated the ball rolling on the whole family planning. We are not currently wanting a child at the moment , as we both still live at home and we would hope to be married ,but being married isn't the most important thing to me. I feel like i can get married at any time. I feel like if my health worsens the most important thing that can be taken away from me is having a child. Don't get me wrong i really want to get married too, but i feel like i do not need a ring to know jack is going to stay around for along time. Jack has been tested for the cf gene and luckly we have been told he isn't a carrier , so that is one thing ticked off the list and another thing off my mind. At the moment my cycle is all messed up and we are seeing if after a year of being off the pill .... if finally my periods are finally sorting them selfs out as i have polocyctic ovaries. So we both know that getting pregnant is not going to be easy but it will be worth it. I will write future posts on how that is all going.

for now I'm going to say see ya x

So this is what "sick" feels like.

So last month I turned 21 ! , & it was a emosh time. Growing up I always thought i would turn 21, my parents brought me up possitive and to belive id be the oldest living cf. I don't know if it survivors guilt, but I just feel so lucky, overly lucky  , I am 21 years old. I have seen many not make it this far and it's a sad thought , so I am proud and happy that I am one of the lucky ones, still going strong :). I had a beautiful birthday , thanks to my family and friends and my wonderful boyfriend ! These last five years I have been IV free and I have been really well , but after coming home from Mexico I was really sick. So I went to the hospital to see what was going on , iv lost a stone in a week and my lung function has dropped from 76% to 49%/50%. Which scared the crap out of me. My lung function hasn't been that low in a long time , so I am on antibiotics and if I go back to the hospital in a weeks time and I'm not back up to where I usually am then I will have to go in for IVs. Which I will be dissapointed if I have to, but I also have to remember I have had a really good run and I'm not super women , I am going to get sick some times and I just have to work hard to keep well. There is a small voice in the back of my head which is saying "what if lung function doesn't go back up" and what if I go back to being in hospital every three months. I am just praying my "luck" hasn't run out yet and I can manage a bit longer with out Ivs. It has knocked me mentally aswell and physically , my main goal in life is to be a mum (may seem simple to some , but it's not a gift everyone is lucky enough to get) and the way I have felt these few weeks is terrible. My lungs have shocked me , my body was weak. But I am starting to feel much better and more possitive. My family is used to the whole hospital crap, but jack has had the "best" years out of me, he hasn't really seen me sick, I haven't been in and out of hospital since iv been with him. I suppose abit of me is scared if the whole medical road gets tough he won't be able to handle it or think "what am I letting my self in for" if stuff gets bad. In my heart I know he is a strong guy , and if he had any worries he would tell me, but I am not stupid I know it's a lot to take on , "a sick person" but I luckly see loads of Cfs with their wonderful partners , getting married and having babies and moving in. I have felt "normal" & had normality for so long now, it's almost like I forget I have cf , which I know is silly but I have been so well and not been in hospital. I have got rid of my port, my younger life seems like it was some one else's life and not my own. It's strange. I'm scared I'm almost not going to be able to cope with getting sick as I get older , I know how jacks mind works and it's like he sees me as superwomen and I will never have Ivs again and push 3 kids out and be healthy for ever lol. I suppose that's why I love him. I have never seen him look at me like a "sick" person. What ever the next couple of weeks have in store for me I will cope with it. If I have to go in to hospital I will, I have done it before & I will have to do it again lol. It seems so silly , some of my friends are lucky to be at home 4 weeks at a time and here i am worring after not being in hospital for 5 years. I feel like a kid starting high school lol. I am determined to stay well, so I can get married & have babies and be the oldest ever living cf ! Lol. X 

Future thinking

This month, I feel has been then month of death. Some old, some young and some just brand new to the world. I do not like to get caught up with death. But when it is all around you I suppose it's easy to. You start the what ifs, I have always been very possitive when it comes to my cf, I had never seen transplant or oxygen tubes a path I would ever go down. I suppose that's because I have always been so well. Who knows I may be lucky enough to see the "cure" or a mirie drug that's keeps me invincible. I do feel pretty invincible most of the time, and it may be silly but always told my mind I didn't have cf. I know I do have it lol, but telling my body and mind that don't has made me strong I think, almost like the plosebo effect. If you tell your mind you are ill, you are going to be ill. I don't know if it's because I'm xoming closer to my 21st birthday. I am very aware of the ones that didn't make it to 21, and I am so lucky that I will. Hopefully I will also see my 30th & 80th god being good :) x I am not scared of the future, I belive my story has been already writen , and I belive it has a happy ending and will make a exciting read ;) 

Weight weight weight

Ok so my whole life I have been painfully skinny. & always been told to eat more and to gain weight. It was hard ! So hard ! My weight used to go up and down all the time. I could go days with out eatting very little and didn't enjoy food. Now that my lungs are good I have gained more and more and more weight. 5 years ago I was a painfully skinny size 6 and was fitting into children's clothes and it bothered me. I didn't feel womanly , I wasn't curvy and nothing I wore fitted properly. Five years on, I have gone from a size 8, to at the moment a size 10 and maybe some times a 12! Everyone says I look great and I look healthy. But it a big shock to the system when I look in the mirror and have to buy bigger clothes. When I was younger I never thought I would ever ever watch my weight ! I could eat anything and not gain any weight. Now I gain weight just by looking at a chocolate bar !. It's not that I feel fat exactly , and I'm dieting no way. But I know I really don't want to get much bigger. It's so hard finding the right balance of eatting all the calories you need in the day for a healthy cf diet but how so you know when to stop eatting. Gosh.

Miracles do happen !

Well its true miracles do happen ! not only did one special person get there call for lungs yesterday but two !! I am so happy for both of them, there friends, family and cf community are buzzing at the moment. I pray that when they woken that every thing goes smoothly and there recovery is quick and easy for them both. It really shows what organ donation can do , how important it is. It saves lives ! you always think you and your family wont be affected, but just because you haven't known from birth a transplant in the future might be a possibility does not mean it can't happen to you or some one close to you. think. if you would happily receive a transplant, why would you not want to give back.

Holiday count down.

So i have 15 days untill i fly away for a whole week, alone with my jack :)
Excited. Everthing is bought, not packed yet. Health is good !

We got our test results back.

So me and jack got his test results back , from the genetics team. And it came back he is not a carrier of the cf gene. We are so delighted because that is one big thing off our mind now. :) few. 

Life

There saying babies born now with cf will live into there 50-60s and more. That's amazing news ! I have always told my self I will be the oldest living cf. I was told a lady at my hospital died at the age of 80 with cf , so why can't I ! It's strange, transplant is something I have never seen for my self, nor is dieing prematurely. I no people will say you can't predict when it's going to happen or when you will get sick , but I think a possible mind will take you places. When I was younger I was unhappy and I used to be in and out of hospital for Ivs all the time, had a port fitted. But as I got older I became happier , gained loads of weight, set goals, got existed about the future and my health got better and better. My port has been removed and I haven't had Ivs in about 4 and a bit years. I feel bad sometime the fact I'm doing so well , when others around me are not. It's when some one younger then me passes of cf that messes my head up. It's not fair. How comes I'm so well and there not. Am I just lucky ? Why?, but with the illness I suppose we will never know. For now I'm going to keep positive, keep upbeat, do all I want In life and surround my self with my strong loved ones :).   Xxxx

This heat !!

This weather is so hot !! It drains me if I'm out in the sun for to long. I have salt tablets though , so not too bad !!! We was at wireless Saturday and it was hot !, some much walking and too many people. We was there for a little while but we choose to leave as we all couldn't handle the heat. 

Lovely day, but I don't think I'll ever go to wireless again.

My boyfriend is going on boys holiday this weekend , I can't wait for him to go and come back already so I can count down to my holiday next month ! :)

We are going to turkey for our 5 year anniversary. I'm so excited and it can't come quick enough. I'm loving the sun in london, but I do love holidays as you have the pool and the cocktails and air con in ur room ! Count down to turkey , 38days. 

Ps my scar is heeling nicely ! I will have to cover it with 50 factor when on holiday. But I am so pleased with how it's turned out ! I now have my belly button pierced as well, my last one ripped out. The lady did a bad job lol. So my scar has gone from this : 

Too this : 

I'm now 20 years of age ! Omg I feel so old. Hope my 20s are exciting :)

My cousins little girl is getting bigger every day, she is so lovely and makes me so broody !!! 

I hope everyone is enjoying the weather and using sun screen and drinking lots of water !!  

 

Thinking of the future.

I havent wrote on here for awhile. I suppose not much to report. After loosing chloe it made me evaluate life abit more seriously. I felt guilty the fact that she was gone and i was still here. It made me think i dont just want to drift through life. I want to do things , and see things. One of the important things in life to me, if not the only important thing to me is a child. I believe there is one role for me and that is "mother". It is so hard to have such "grown up" conversations about things you dont want to think about for many years to come. I dont want to fast forward my life. I dont want to feel rushed into anything. But i also dont want to do nothing and not think about things and look back and hate my self for it. So first step is to move out, (most scariest thought ever). So i put my name down for the counicl, obviously going to take along time but i hope when i am finally ready i wont have to wait too long. The next biggest thing that has happened this week is that my partner got tested to see if he is a carrier of the CF gene, we wont know the results for at least 2-5 weeks. I am terrified even though i wont admit it to anyone. I think for along time i always thought can we be that unlucky ? Am i tempting fate as where not actually going to try for a baby as yet ? But then i am glad he has been tested because if we waited till we was ready to have kids it would of ment waiting longer. Then if it came back he was and we had to go threw ivf , that means even longer. I know i havent been told "leah your going to die at this age" but i have never felt time was always on my side. I dont think any one can think like that, "all the time in the world". You could be knocked down by a car tommorow and you may never of achieved the things you wanted because you always thought there was going to be many tomorrows. I dont feel sorry for my self having this view on life, i think I'm kind of lucky. I do not take anything for granted, not my family, friends or my boyfriend. I know how special life is and i know how special they all are. (Nothing like a incurable illness to give you prospective in life). So the wheels are set in motion for the future. I just have to sit here and twiddle my thumbs till i get the results back. Either way we will deal with it. What ever the out come.

No one said it was going to be easy they just said it would be worth it.

How hospital went yesterday and goodbye to a friend.

Yesterday was a very long tiring day. Fast from 10 o'clock to previous day for a glucose test (to see if I have diabetes). I was ment to have bloods at 9, but didn't end up having them till 11 ! , then I had to drink the glucose drink and then wait two hours to get bloods again, then I could eat. I was starving , iv never demolished a Blt like that in my life ! So weight was up. Everyone was happy with my progress from my results of last year. My lung function last year was 70% not its 79% woo !! I so badly want to get into the 80s now. (Hopefully next time I'm there). I like annuals because you can see a difference a year makes, but every year I'm getting older and they bombard you with loads of stuff, like the future. A lot of stuff to think about I suppose x I'm just happy everything is up up up and hopefully I can keep it all up ! I get scared like there's only so high I can get till the only way is down. I will work hard to make sure that doesn't happen x

something I'm really enjoying a the moment is the cf community on twitter ! I love speaking to all different people from all different places , some ill, some well. Some with babies, some getting engaged, others doing the dream jobs, holidays. I get a lot of joy speaking to other Cfs, I suppose it easy to click with some one when you have this one huge thing in common.

We lost a dear friend on Easter weekend , she was the longest cf person I knew. I grew up with her when I was a child in hospital on rosé ward. She was funny and ways getting her self into some kind of trouble. She was a fighter , if Chloe had thought me anything is to never give up ! When you loose some one to cf it is a big sting , I'm not sure because I no I have what they have, it makes you angry, why am I so well when she is so sick.its a big wake up call, that where not all here forever and we have to live for today !! Chloe is being cremated today, I feel like such a coward but I can't go, iv been to older people's funerals, but they have lived a full life! She was only starting hers. I can't say goodbye that would be to final x I shall say goodbye In my own way today x

She didn't get her call in time , we need more people on the organ donation register ! Please don't waist your organs when your no longer here, there are people that need them! http://www.organdonation.nhs.uk/how_to_become_a_donor/
Sign up today, it only takes 30 seconds , don't leave it for tomorrow because no one is garenteed a tomorrow x
If life teaches you anything, it's that we are not all here forever. Even if ur young, old , strong or weak. So do what makes you happy. Smile everyday. And make your dreams come true with the people you love around you. And remember to tell people you love them !!

Hospital tomorrow !

I have my annual review tomorrow at the hospital, and I am very nervous. It's not the most exciting day out. Kind of a pain in the butt. The only good thing is I do no longer have a port (small little box in my chest) woo they took it out when I had corrective surgery on a scar on my belly. As I haven't had ivs in nearly 4 years, it was near the end of its life I suppose anyways. And getting it flushed every 6 weeks was annoying. My hospital is about a hour on the train. At least tomorrow they don't have to access my port. I will have bloods done, X-ray , glucose test, talk with the team, see if I have gained or lost weight. Most importantly see what my good old lungs are doing , with a lung function test. Last time I was there I think it was about 78%. Which for me is one of my best. I was in the 60s for awhile. So when I got to high 60s I was excited, then when I reached 70s I wanted even higher. It's a strange feeling, like your in competition with your past self. My lung function is so important, more so as I'm getting older. I want a child more then anything in the world. In order for me to have that I need the best lung function I can have, as I could loose up to 30% of my lungs while pregnant. I do not want a child now, but I need to keep my body and lungs the most healthiest It can be. Well we shall see what the hospital says tomorrow. Xx

So this morning i had to get up and go to the job centre  -_- , joys. Curently at home watching day time telly. Just ate my lunch, yum. I have a second job intreview today so hopefully fingers crossed i get it, iv been looking for a job for so long now and im starting to pull my hair out. With cysticfibrosis i feel like its even harder to bag a job. As soon as i tick that disabled box i feel like the application flys off to a cyber bin some where.

I am abit nervous today, my last interview nothing was said or asked about my cf. So maybe today i will have to fill something out stating that i have a illness. At this point in time i do not get disability living allowence and they said im not "ill" enough. I find it so silly i have a life long genetic illness, its not magicly going anywhere. I suppose as my health gets worse then i will be able to have my dla back. untill then i want to work , as long as i am able too i want to be in employment.


There are all these questions i want to ask them today, but i dont want to overwell them. And i havent even been offered a job yet, sooo. When is the right time to ask them questions or tell them things about my illness. What if i have to go into hopsital for two weeks, will i loose my job ? , will they be able to give my hours to some one else ? Im not completly sure where i stand. Just have to see what happends today i suppose.

I think im getting a cold or something. My chest was really tight yesterday, i was weasy alot and i seem to be coughing alot more. My chest feels ok at the moment. Fingers crossed it doesnt go to my chest or i end up getting sick.

Well im off now, lets see where the day will bring me aye.

forever jack xx

This is my first ever post , woo !

So last night i was at st james palace for the princes trust football association evening. I was in my black wedges and jeans and long top. They wanted me to wear a specail top, but i kept my long sleve top on under it as i had brusies all up my arm from bloods being taken and didnt want to look like a druggy when i met HRH ha!.

It was a great evening, i met other people who had also been on a princes trust course. There where also premiership footballers there (even though i had no idea who they where sorry) nice guys though and they all do amazing work for the trust.

The BBQ chicken winges where soooo nice, i could of sneeked some back in my bag if i could got away with it lol. I also tried sushi for the first time ! , it was okay dont see the big fuss give me a chicken wing any day. ! yum x

So i had a brief talk with prince charles, i was a little bit nurvous but it went ok and i didnt mess up or get pushed to the floor from his boody gards so all good. He did a great speach after, even though a girl fainted near the end of his speach. I hope she was okay, it took the attention of me coughing for a little bit even though the cranberry juice helped settled it, it was so warm in that room and so many people so a little cough now and then. I feel a bit embarresed when the room is so silent and your cough is like 100 times louder.

well i dont want to bore anyone and write to much so this is my first blog, hopefully first of many.

forever jacks x