A week done...

Hello all! Iv been in hospital a week today, its gone quite fast, iv been doing some nail orders to keep me busy :) So as i told you in my last blogg my infection lever was 51 im happy to say its gone down to 17 :) Yay... i was hoping that would be low enough to finish my IVs Thursday but the Dr said he wants me on stay on them until Christmas eve, he said i can go home Thursday but do them myself over the weekend. Normally i wouldn't mind, but iv been planing this weekend for ages now and i don't want to be tied down to meds and times... and i don't fancy travelling to Pappy and back Xmas eve.. So i asked the nurse to ask them to change there minds and he said they will have a meeting Wednesday and met me know. Also they want me to have my Annual review Thursday before i go, which im not happy about, iv been here all week and they wanna do it the day i go home.. they said il be done early but i know what these are like, i have them every year and i am never done on time, im always here for the whole day. Its my brothers birthday Thursday so i want to be home early to see him. Soo i have lots of begging to do!

Fingers crossed i can go home off IVs :)

2,172 hours on the list

Panic Attack & Pee... haha

So i came in for IVs on Monday after ringing Pappy and telling them im not feeling good.. i wanted to make sure id be well for Christmas too, so they said id have to wait a while because there so busy for beds.. I said i wouldn't mind starting them at home but they said they didnt even have any room for me to wait to pick up my IVs. So i waited almost a week which wasn't to bad but i could feel my chest had got worse in that week.

Last Friday i had a panic attack, iv never had one before so this scared me alot! I took my gramps up to sainsburys and i waited in the car for him. I parked up and just put some crimbo tunes ons. I knew i wanted to cough so i got my tissues ready, but as soon as i started coughing i couldn't take a breath in, i just couldn't catch my breath...it felt like ages, i knew it was only seconds but i just couldn't calm myself i opened my car door to get fresh air and then struggled to get to my oxygen which was behind me, i finally got it on but i still couldn't breath so i whacked my oxygen up to 6Lts (didnt see that at the time). Then where i was panicking i started to wee!!! i was so embarrassed! i couldn't stop! Its funny to look back at it now and laugh but at the time it was horrible! i finally caught my breath and drove home to get changed... after that i was to scared to cough again, i spent the rest off the day in bed feeling sorry for myself. But im okay about it now and just have to be more prepared in case it happens again.

So i came in on Monday when they told me too, they said come in at 3 and your bed will be ready...Ha! i will never believe them again.. I got here at 3 like a good little lamb and i went to walk into the room they said id be in and they shouted at me not to go in there as someone was there.. The room i was going in was not ready at all, there was a young girl still in there waiting to go home. So i had to wait in the corridor until she went, an hour went by and she left then i had to wait for the cleaners to come the took another hour! So after two hours of sitting in the corridor i was aloud in! Then much to my disgust they tell me the internet doesn't work in this room! So i have no internet and no phone signal to talk to anyone! but to top it off my telly also broke the next day... i was having no luck what so ever haha but now they have moved me to a different room with internet and signal so i can be social again! hehe


My CRP (infection levels) were 55 when i came in, the dropped down to 44 but are now back at 51 for some reason, i feel like iv pick up a bit of a cold while iv been here so hopefully in a few days time it will go down and il be home for Christmas! I wanna get in the Christmas mood and its hard to when your stuck in here... Iv got my Brother and Nans birthday next week i wanna be home for, and i need to have my nails done asap!! haha

Well my weights not changed much staying the same which is good :) And i have now been on the Transplant list 3 months! wow its gone so fast! I keep having nightmares about it though..every few nights il have a dream about it and wake up all sweaty and feeling sick.. but i just have to try and not fixate on them..

So thats all folks! Il let you know when il be coming home & my crp ect.. :)

xxx

2,096 hours on the list

2weeks home!

Two weeks iv been home now, and iv had a cold most of the time. yukky!

The day after i came home i was feeling very short of breath and just put it down to me moving around more and walking, but i continued  to feel the same on the Monday and Tuesday. I spoke to one of my CF friends and she was feeling the same, so we thought we could both be feeling like this because of the cold weather. I have to remember my lungfuction has never been this low in this weather before so im going to feel a difference. So i rang Pappy to bring my clinic forward to this week, but i didnt go as i am a scaredy cat about driving in the dark lol so my dad is driving me next week :)

Iv had a cold all this week, coughing and sneezing. iv now lost my voice too :( But im not staying in bed im still up and about doing things :) i like to keep busy!

Iv now been on the Transplant list 10 weeks, gone so very fast! Im still jumping to my phone every time it rings lol don't think il every get used to it.. One of my friends friends had his lung transplant yesterday after waiting a very long time! so hope he has a fast recovery :)

Thats all for now :) xx


1,734 hours on the list

Need your Prays...

One of my friends is having a hard time at the moment.. Shes on the Transplant list and has been for nearly 6 months now. This is a post from her fiancé -

Hi guys it's Josh updating here on behalf of Kerry: 
We have had the GP come to visit Kerry today as she took a bit of a bad turn through the night and he has confirmed she has pneumonia which explains all her symptoms and he is helping her to get a bi-pap machine which should allow her to have a break from the exhausting task of breathing and it could have a good impact on her quality of life.
We

 also have the hospice consultant coming to visit tomorrow to see about making her more comfortable because right now she is struggling a lot.
I know for a fact she is overwhelmed by all your messages after seeing the smile on her face every time I read her the kind, supportive comments from you guys, it really does brighten her up and keeps her positive head on, so thank you for that.
One thing for sure, as you all know, Kerry is a fighter (she doesn't know I've added this to the comment) but I'm so proud to call her my fiancé and even with everything she puts up with, she never ceases to amaze me with her positive attitude. And I want her to know that the puppies and I are so proud of how far she's come and the progress she's made despite the obstacles she's faced particularly this year (multiple lung collapses etc) and as two years ago we were told she wouldn't even be here right now so the fact she is still with us and her weight certainly wouldn't be where it is today, just goes to show she really is determined to get her new lungs (or stubborn depending on how you look at it lol!)
With this positive spirit, the amazing support and the love from her family and friends, I know she WILL get through this.

Please keep her in your thoughts and prays. 

Christmas & Hospital!

Iv been getting alot of different feeling lately. I was doing a bit of Christmas shopping this week and it hit me that i could get my lungs before Christmas, then i thought what if the op didnt go to plan and that was it? So i want to make this Christmas very special! Iv nearly done all my Crimbo shopping!! Its so organised for me haha...

 Im going to take my little brothers to scottsdales soon, i cant wait!! Going to take one of my youngest brothers to see Father Christmas :)  Being there gets me so excited for Christmas, Im in charge of decorating the house this year!! YAY! hehe

So hospital news .. Im still in hospital day 7, my infection levels have gone from 45 to 19 so on the right track :) Iv been extremely bored this time round but feeling good! Chest feel clearer, hope my lungfuction is higher than 20% this time... well even if it stays the same il be happy :)

iv now been on the Transplant list 8 weeks!! Gone so fast!

1,370 Hours on the list

Nearly 3 weeks!

Oh my gosh! its been nearly 3 weeks since i finished my IVs!! Yaaay :) Haven't gone that long without going into hospital in ages.. since June time i think, wow! So iv been enjoying my time at home, relaxing and trying to keep busy. I had my Button changed to a bigger size last week, i had a nurse come out to do it for me and she blooming hurt!!

i had to lay flat and she took out my old button easy, it felt very strange though, then she got the new button but it wouldn't go in...she tried for a while to get it in. It was so sore and very painful. I nearly ended up biting my nans hand lol. So it wouldn't go in, so she got some olive oil to put around it to help. She finally got it in. 'we have to be cruel to be kind' she said. Wasn't her blooming belly going through all this though! lol.

I also went shopping in a wheel chair for the first time last week. I had been dreading this for ages, but i done it and it really wasn't bad, although it was in a place where i didnt know anyone. Think id feel different if it was in town. But i done it and im proud lol

So iv got clinic on Monday and iv got IVs planned on the 12th for two weeks. Il update after then!

Thank you for reading again :)

1,082 Hours on the Transplant list

Home IVs

Well i came home Thursday night after begging the doctors to let me home, 6 days was by far enough time in hospital after only being in two weeks a week before then. So they said i could go home but only if i do a week of IVs. Normally i would say no as i don't like doing them at home but as i was so desperate to go home i agreed.

There horrible times aswell;

8.30am 3IVs

4.30pm 2IVs

8.30pm 1IV

12.30am 2IVs

Im not good with early mornings lol so its hard for me to go to bed late then up early to set an make them all up! But its worth it all to be home :) Iv got clinic tomorrow afternoon for my lungfuction and see if 10 days will be enough or if they want me to carry on until Friday. My weight is doing well :) i feel very field out lol

My cousin had a baby 8 weeks ago and he was born premature at just 26weeks but  he is a fighter and is coming home Monday :) hes done so very well!

I just wanna say that im so proud of my whole family! Every single member of my family (and there alot of us) are so brave with everything we go through, we really do fight with everything we have and we always do it with a smile. Love them all!

xxx


625 Hours on the list.

Disabled Parking rant...

Well this post is about an issue me and other Cf'ers have troubles with. People stare and shake their heads, give us dirty looks and some even come up to us and tell us how rude we are to park in a disabled parking spot. Iv had loads of trouble with people before, mostly elderly people because i look 'well' and so young.

I was talking to a young CF man today, his lungfuction is like mine very low but high enough to still do things for ourselves. He said he went to his chemist yesterday to pick up his meds and parked in a Disabled spot, he did have his blue badge up so he was 100% aloud to be there. He said as he got out the car an old man with a walking stick came up to him and started shouting that hes wasn't aloud to be there, he told him to move the car and show respect to others that need to park there. the thing that makes me laugh is its always elderly people that have a go at us, when they should know better. They always say how us young people never have respect then they don't even show it! 

I parked in a Disabled spot in town once, i was out of breath from walking as where i needed to be wasn't close to the car park. So trying to get my breath and old man confronted me and told me i wasn't allowed to park there, i never normally am rude to people and don't normally talk back at them, but i was fed up of people thinking the same thing about me all the time. I asked him how old he was he said 87, i said il be lucky if i make that age, i told him im waiting for new lungs and at his age he should know better than to judge people. he said sorry and drove off. I get this nearly every time im on my own and park... When someone else is with me its like there to scared to confront me.

Im so annoyed that this keeps happening, how rude people can be to judge us cos we look well. 

So next time don't judge a person that looks healthy, or worse dont go and tell them what your thinking, their probably already gong through enough and wont need someone telling them there fine when there not does not put us in the best of moods!

Just having a bit of a rant...im aloud im in hospital :) xx 

489 hours on the list

One step forward two steps back..

That what i feel like im doing at the moment, taking one step forward then two steps back. I came home 10 days ago, felt great was doing things all day, keeping busy, eating lots and sleeping well. Last Saturday i had my flu jab, on the Sunday i had a temp of 38 and was in bed all day so didnt go Cambridge as planned :( then i was fine on Monday just coughing a tad more. Then Wednesday i felt terrible, wasn't eating anything and couldn't stop coughing, was very breathless sitting down and very very tired. I rang Papworth to bring my clinic day forward but they said they had a bed available, Which they never normally do I'd normally have to wait 1-2 weeks. So i said il come in, as im now on the list i don't want my infection level getting high.

So im back in, same old meds, same old routine. Think il be in roughly 2 weeks again :(

But all for the good hopefully!

434 hours on the list

Home sweet home

So iv been out 2 days! I had a busy yesterday was in and out all day, up and down the stairs too :) went to town and then to my dads, had a good day And only coughed twice! Was awesome I felt so good :) I think it's caught up with me today though, still feel good although a bit sniffy and sneezing, hoping this will pass and not turn into a cold! Don't want to be returning to pappy straight away!

I was ment to be going to shopping on my own today to help out my grandparents but iv been worrying an I'm a bit nervous going on my own, I haven't done a big shop with my chest like this before, I would of worn my oxygen and that doesn't bother me but if feel better if someone was with me. So my gramps is going to come with me later :)

I'm making some cupcakes tomora for my nan hardwicks little tea she's having then I'm off to cambs on Sunday for another Jamie Oliver's :) yum!

220 hours on the transplant list!

Spread the word...

I just want to thank everyone that has already signed up to be an Organ Donor - but Im being greedy and want more!!!

I want more pics of you and your Donor card! Get everyone you know to send me there pic and in October il be putting everyone who has signed up in a raffle to win a prize! :)

Me and my step dad are in the middle of arranging a charity event for CF and LLTGL ( LiveLifeThenGiveLife) I will keep you up to date with it all :) but for now spread the word and get pics sent to me :) the prize will be announced soon, and it won't disappoint!

So get your card or banner saying your a Donor out & get snapping! :D share this blog as much as you can pleeeeeease :) thank you!! Xxxx

Quick update!

I'm writing this blog from my phone so I'm not sure how this will end up lol so here goes...

So my last blog was about my transplant assessment, I got a call to go back in a weeks time to sign some papers, they told me it would then be about a week before I got put on the list. So in the meantime of waiting I got pretty ill and needed to come in for some IVs, my infection level (crp) was 184!! Which is terrible! As iv said before it should be under 10. So I'm on meds now and on a drip 24/7, the time is going so slow aswell! Iv already been in a week which feels like about 3 weeks, especially as I don't have my laptop with me I don't have much to do in the day other than sleep and eat! Which isn't to bad as I'm putting my weight back on :) as last week I had a stomach bug and couldn't keep food down I lost 3 kgs, but alls good cos iv put it back on and more now :)

So while iv been in iv been trying to get hold of the transplant team to find out when il be on the list. And I found out yesterday that I'm finally on the active waiting list :D yaaaaay! I'm so happy that all my hard work has paid off, having my op that I was so scared of having was worth it and keep coming in hospital when I didn't want too was worth it :) I feel a little proud of myself! So now it's just a waiting game, I'm keeping my phone near me 24/7.. Not letting it out of my hands lol there is a lot I have to do still, only in the way of phone calls though. As in of I go more than an hour away I have to let Papworth know where I am and the address I'm at. And if I get a temp I have to let them know, and each month I have to ring with updates on my weight ect... But that's all :)

So happy happy happy :) sorry its a short but sweet blog, once I find my laptop lead il blog properly :)

Thank you for reading xxx

So this blog is about the big Transplant assessment!!

I had been so excited for it, for weeks i have been counting down, its all i had been able to talk about! But then Monday i just completely changed. I was so nervous, it had just hit me that they might say no! Either im to unwell or come back and have another review in 6 months time, or that because of my Cepacia and Asspergillis i have it would be to risky and they wont do it. I was crying on and off all day, making myself breathless to which point that i was using my Oxygen all day and my heart rate was 149! I was thinking of all the tests i had to have too there are so many! I got told about this one where i would have to out a tube (NG) down my nose to test my reflux. I remember me trying to put an NG in before, i just cant pass it..so i started panicking about that too. But one friend told me there is a different test they can do for that, so relaxed a bit. But that night i didnt sleep at all, and every time i did nod off i just saw me having all these tests done. I had to be at Papworth for 9 O'clock, when i got out of bed i just wanted to jump back in and stay there all day. I was in such a mood. 

Me and Ben got there and got shown to my room, then i had bloods taken straight away,and there was loads of blood to be taken!! My arm felt dead after! Then i saw the Transplant Co-Ordinator and he gave me my timetable for the 2 days...i only had to have two tests!!! Lungfunction which im used to and a heart scan which iv had before! then just to see the doctor and thats all! I was panicking over that for no reason lol 

Then my mum came up aswell when i saw the Dr and the team. We got there at half 1 and didnt get seen until 5!  

So we saw the nurse which told us all the things that could go wrong and treatment for after, i already knew much so wasn't really anything i didnt know. Then we saw the Dr and he told us the same as the nurse then said 'so would you like to go on the list?' I could of jumped up and hugged him but i just said yes please!! :) he said the surgeon is next door and wants to talk to me, so he said he will get the paper work sorted and i can come back next week to sign them and then il be on the list :) 

While writing this i just had a phone call from the transplant team, and they said my Anti bodies has changed since last time. Before they were 15% which means there 85% chance of finding a match. But today he said they are now 70%. So that means theres now 30% of finding a match. Im still positive but it is a kick in the teeth...

Thank you for reading and all my support and messages you have been giving :) 

138 Hours until im on the List!! 

Twenty!

20!!!! Yes thats my new number, im now at 20% Lungfunction! :D Yessss! I gone up 2%, it going up each time so im very happy about that, i think doing the bike everyday for 11 mins has been helping, so il continue to do this when im home :) 

Il be aloud home tomorrow, it will be my 11th day on ivs and im aloud home without them too :) 

thats all about me for now but i would just like to mention a friend of mine, she has Cf too and is currently on the transplant waiting list. Shes hoping to start something new this week to help her breathing, it does the breathing for her so she can rest.She has been waiting for a bed to come in to start it for a week now, Papworth keep promising her a bed then changing their mind. This is making her more stressed out which is putting more strain on her lungs. I really hope she gets a bed soon and more importantly gets her new lungs as soon as possible! 

           

Here is her blog if you would be kind to read and send her some support! http://kerryalexxx.blogspot.co.uk

Thank you for reading again! 

191hours until transplant assessment

News,a rant and maybe something special :)

Well iv found out i dont have the Gene G551D, i have one common one and a rare one, not sure on there names but theres no drugs been made for them ones yet boooo :( But they told me when there is il be able to do a drug trial for it, so hurry up and make it please!!! 

My infection leverl has gone from 66 to 23 :) so hopefully another couple of days and im going to ask if i can go home.. My mum and brother are going away for a few days and i wanna try and sneak there with them lol


The weather has been so nice this weekend i hope you have all enjoyed it! I only packed jeans and leggings to come here with so i was sweating yesterday!! lol I went for a few walks, much to the disgust of the nurses, as i had to come of my drip (im on it 24/7) my Doc in the week said i could have the weekend off it and come and go as i please... But that dr wasnt here this weekend and she didnt make a note of it. So after alot of stressing the nurses let me go out for a bit, i only went to the canteen with the family. The nurses were making it out as a really big deal. Then when i came back they tried to put me back on it and i said no. Ben was coming up later and we wanted to go out for a bit. The nurses were telling me no i cant go back out, i was getting so annoyed at this point i asked to speak to the on call Dr and he just said its fine for me to go out, and asked me why were they making a big deal out of it, so im glad it wasnt just me thinking it. So after me and Ben came back they wanted me back on the drip, Im on Cef on a drip 24/7...Just before she put me on the drip she pushed 3gs of Cef in me then started the 3gs drip... I kept thinking that doesnt sound right, so i asked to see the on call Dr again, it was a different on this time and i told here what the nurse done, she got my chart out a looked it over saying i should of had them at different times not both together!! She stopped it and told them to start it again in 4 hours time... Im sooooo glad i ask about it! Really do not like that nurse, i miss my other nurses on the other side of the hospital lol 


something random happened this week ... I was just sitting waiting for ward round to see the doc and one of the Cf nurses came in and said 'you can say no,but we was wondering if you would like to be in a documentary?' Oooo i got excited straight away and said yes!!!! She said the producer is outside and would like to talk to me, she came in, she looked really young! like my age, she didnt stay for long but just asked about me and how my life is then she said she is going to come back next week to explain more about it. She left an the Cf nurse (Lindsey) came back in and said it will be the programme One born every minute and 24 hours in A&E. 

I got so excited and rang my family, but since then iv been thinking if i should do it? Im mean i really don't mind sharing everything with you on here because you read it you cant see me and you don't see me struggle with walking or coughing until im sick. So i keep thinking do i really people seeing me like this? Its such a big part of my life il be letting people watch. I know it will be advertising for CF and Organ Donation, iv just got to think about it.... Il have to look my best though which means shopping!! I don't mind that part lol So il see the producer next week and talk to her, see where that takes us! 

So il update again in the week to tell what happens :)

215hours Until my transplant assessment!! :D 

Last few days..

Day 4 Of being in hospital...

Iv been exercising on the bike since iv been in and iv broke my record time! iv now reached 11 mins :) I did use my oxygen so i wouldn't get breathless and it did help, i was fine after and didnt cough much. So im going to keep at it and try and increase the time by a minute each time :) 

Iv not been happy being here this time round so far. I came in on Friday night because they 'want me in fast' so i got put on a old persons ward, In a small room where i had no shower room soi had to share with others (which isn't good for cross infection) Then i saw the on call Dr as all my normal ones weren't there. He didnt know what meds to put me on so waited until the morning to deicide. Morning came and i hadn't even have my port accessed yet, no sign of seeing any doctor soon either. I got moved to a different room, still on the old peoples ward but this room had its own bathroom :) much better! Then it was about 6 O'clock that i finally started my meds, i was so annoyed! I didnt really need to be in until that evening. But anyway that's done now, im on 3 different IVs and one of them is a drip which is 24/7.. Il be on it for the whole time im here. Which is annoying to have a drip stand with me where ever i walk, i keep forgetting im connected and walking away from it then it pulls on my port, does hurt a bit lol 
Then on Monday i got woken up and told i had to move rooms again, this time on a different ward, the room was in a corridor and was the smallest room ever! it had a telly but it was so high up on the wall i couldn't reach it to turn it on!! The bathroom an shower room was down the hall, so each time I needed a wee i had to walk with my drip stand down there. Very annoying lol The nurses told me i would be in that room for a few days, i really wasn't happy and told them i would go home and wait until a room was available. But then after a few hours of sleep i was woken and  told i was moving back to the other room again!! I was so fed up, i haven't been able to unpack yet and still cant because there planning to move me again!!

So thats whats happened over the last few days... there also going to see if they can move my Transplant assessment so i can have some tests now while im in instead of going home and coming back a few days later for them :) 

So we shall see!! Thank you for reading! xxxx

G551D.

So im back in hospital again... 

At my clinic on Monday i told the Dr i wasn't feel my best, i have been coughing a lot more, using my oxygen more, much more breathless and not having any appetite :( i didnt do my LF as i didnt wanna set my coughing off again, my back was in agony from coughing, iv pulled so many mussels its just complete pain! They said i should come in and i agreed but they had  no beds available at the time so i just had to wait until one came free, which was yesterday. 

So im in now, haven't started any iv's yet which im not sure why? i just gotta wait to see the dr.. as its the weekend its only the on call drs which are on, and there very busy all the time! 
So while im in there going to try and see if i an have my Transplant assessment early :) and also see if i have a gene called G551D. I asked them to check this for me. On of the cf girls i follow has this gene and shes just been put on this new amazing drug called Kalydeco. Heres a bit of info on it -

 A new medicine has become available. It’s called Kalydeco and it treats the cause of Cystic Fibrosis (CF). CF is caused by having just 2 faulty genes. There are different types of mutations of the faulty genes. Kalydeco works with the gene mutation that I have by fixing the fault. In America, this medicine has been approved and available for use since the end of January. People there are having remarkable, some even miraculous, results!

It has been a very exciting time for all of us who have CF and have this mutation. We have been following all the success stories closely. However it looks like we are going to have huge problems in getting this medicine to the people who need it here in the UK. It is very costly, and even though it saves lives and would increase the quality of life for so many, the NHS and hospital drug and therapeutics committees have to agree its funding. At the moment all the treatments that are available for CF treat the consequences of this disease. Kalydeco is DIFFERENT - it is a gene modifying medicine. It is a little blue tablet taken twice a day that fixes the fault!! There has been nothing like this for CF before and therefore NEW FUNDING should be put in place. There is no comparison between this medicine and what we have had available up until now!

So im hoping i have this and can try it out :) no harm in that! The girl i follow is on the transplant list and her LF was 14% when she went on it and she has been on the tablet for 3 weeks now and her LF is now 23% and she hasn't needed to use her oxygen since then either! its amazing!! She has now asked to come off the transplant list too! 

So my mission in here this time is to find out if i can go on this :) 

I would just like to say thank you to everyone who has sent me there pictures of themselves with there donor cards :) and also to people who have signed up :D Thank you very much! :) 

xxx

Fitness!!

So since being out two weeks now i got my date through for my Transplant assessment. The 28th-29th August!! :) I got booked in pretty quick. i was expecting to be waiting 2 months maybe more for it. Im not sure what to expect? I know iv got two whole days of tests being done, more bloods to be taken. But not sure on what the tests will be. One im dreading is having bloods taken from my wrist, iv been told it hurts quite a lot but i have got a tattoo on my wrist so i keep telling myself if i can have that done i can have some bloods done lol 


im excited to think if all goes well (touch wood) then hopefully September time i could be going on the Active list :D :D i get butterfly's every time i think about it! :) 


iv decided recently i want to be more fit and active, which is hard for me to do at the moment. Walking up the stairs is enough of a workout for me lol Im going to try out some Yoga to start with, its simple and slow so hopefully that will do me fine lol iv got a exercise bike at home but i can only do about 2-3 mins on it and when i get off im ready for a nap lol but im going to try more, some people i speak to with CF are complete fitness freaks (okay they have a much more better lungfunction than me)  but i want to do more. Also swimming, now iv put on more weight i feel more better about myself being in a swim suit. I wanna get in a pool and just swim for a bit, not over doing it but set myself a few targets to get to. So this is what im going to be aiming to do this month, get my body fit before transplant :) 


Nothing else really to report... I have been coughing a bit lately, so much so that im being sick due to coughing to hard. Iv been training myself how to cough slowly and less hard lol doesnt really work, think its all in my mind! 


Well thats all for now :) Will update again soon! thank you for reading..
 xxx


im also having a play around with my blog, so thats the reason for it being a tad messy at the mo, will be updated and new soon :) x

Home Sweet Home

9 days done and I'm coming home :D yaaay! Iv put on more weight too :D I'm now at 48kgs :) so since 23rd April iv put on 9kgs which is 18lb :O wowzers!!! I feel so much better for it too, everyone has noticed :) iv gone from barely being a size 6 too being an 8 and even now I'm undoing my button on them, so I'm so happy about that. I'm still waiting to hear from Transplant, I think that will be a while before even getting a date let alone going formthe assessment. I'm quite annoyed too because me and a Cf friend both started going through this at the same time, I'm being assessed here at Pappy and shes gone to Harefeild. And she's now on the list. Keep thinking if iv made the right choice staying here. Other than me finishing IVs nothing has happened. Thankfully. :) Thanks for reading again xxx

Transplant..

Transplant.. How does it make you feel when you hear it.. Do you feel anything at all or is it just another word? For me hearing that little word gives me hope, makes me feel scared,happy,sad,excited. Scared- I feel so scared about having a transplant, iv heard so many different story's.. No ones story is ever the same. I tell myself not to read them so I don't have any ideas in my head but I can't help it, I read them then I can't stop thinking about it. One of the scary facts are 9/10 people don't make it through the op. That scares me. Happy- I'm happy that at the thought that I could have this op. I could have it done and be able to do things again.. I want to do things that you probably wouldn't even think of being hard to do. I want to go for a bike ride, I want to jump on my bed, I want to take my brothers to the park and run around with them instead of sitting on the bench watching them, I want to do loads of normal things with Ben, go on holidays and travel. This makes me happy thinking I could one day do these things again. Sad- I'm sad that I'm 21 and I have lots to deal with, but not just me for my family too.. They go through everything I do, and I feel horrible that they do. It's not fair that I'm only 21 and can't do things 21year olds should be doing. It makes me sad because I feel like I have so much life to live. I feel like I'm 21 stuck in an 80 year olds body. Excited- every now and then I get little shoots of excitement go through me. I know I can do this, I can go through everything, I feel string enough and brave enough to push through it all. I want to be on the list, and be well enough to get the call to have the op. I get excited when I think of getting that call. That call that will change my life. That's what I'm aiming for now. How does it make you feel? If you didn't know it's Transplant week & it's nearly over. Iv tried this week to get people to aware of Organ donation and iv tried to get people to sign up, I only know of one person that signed up. I'm happy with that though, that one person could help and make someones life. I had my Transplant appointment today, I'm a bit disappointed though. My doctor wasn't even there. I waited with my Gramps for 2 hours as this other doctor was running late, I saw him and he said I need to see the other dr! So hes booking me an appointment to see him and also have a few more tests done before I can go on the list. But after that hopefully il be able to go on, so I'm still aiming to be on the list this year. Fingers crossed!! Thank you for reading and if you would like to sign up https://www.organdonation.nhs.uk/ukt/Consent.do?campaign=1160 click here to do it :) give the gift of life!

Hotel Pappy, Room 15...

Well... Im back in hospital & back in the same room with the same horrible bed, I Came in yesterday afternoon, but I feel good :) weights still up, I have a BMI of 20 now :) much better than April time when it was 16. I can't complain to much about being in here tough, iv had nearly 8 weeks out and haven't had that long out since last June :) can tell the weight has helped with my infection levels :) my infection is up a little tho, it's 40 atm, but that's not to bad it's been way higher than that before. My lungfuntion last week was 17%... Im sure that's not right tho. I'm still walking around, and without oxygen most of the time too. The woman that helps with the blows was in a rush to get home and didn't let me have anymore goes on it, I'm sure I would of got it to at least 20 something. But il have another go when I'm in and I will take my time doing them :) And well the time is nearly here!! See my transplant team tomorrow to find out what's next for me, I'm so nervous but at the same time I'm excited too..there's just so many emotions going through me at the moment. My family have been through a lot this week, it's been a really hard time for us, my nan isn't well at the moment and she is in hospital, addenbrokes too, shame she's not in papworth and we cant go visit each other. Iv asked not to go on a drip this time round soni can go and see her as it's only over the road from me, well 20 mins away. So that's all at the moment, il write tomorrow if it all goes well and I'm in a good mood lol if not it might be a while... Fingers crossed!! :) Thank you for reading :) xx

little catch up

Well iv now been out of hospital 6 weeks, which is the first time since last August!! Since then iv been in Papworth every 3-4 weeks.. So I'm happy with this!! :) Iv got clinic Monday and will be doing my lungfuction for the first time since my PEG op, when I last done it it was 22%, although at that time I had tonsillitis and a very sore mouth so it hurt to do it, I'm hoping that's why it was so low, I'm usually around the 30% Mark. The last few times iv been to clinic iv avoided doing it because iv been to scared for the results, but I do need to do it now. I need to know where I'm at now. This last week iv been very tired and sore, my chest has been aching where I'm coughing a lot. I haven't been sleeping well, i wake up coughing every night, I don't remember the last time I slept all the way through. So where I'm coughing its aching my chest and iv also pulled a few mussels in my back which is hurting like mad. Iv been sick a lot from coughing which is giving me belly pain, AND strangely my eye is hurting from coughing!! My eye?! Lol I don't know how but it does lol so this week Iv just been exhausted from all this aching and nit sleeping. I think maybe il be going in pappy soon for some ivs, get a bit of a rest and a boost :) So I got my date through to see the transplant team :) Friday the 13th! As soon as I heard the date I thought great, of course I would get that date lol I was worrying about it for a while, I know it just a date and I shouldn't be silly over it but I couldn't help it, I got diagnosed with cf when in was 5 on Friday the 13th, but my dad said to me 'it's lucky I found out I have this then, cos if I didn't I wouldn't be here' which is true so that's made me feel better, and it's also in transplant week which has got to be a good thing :) Il post again after my clinic :) thank you for reading! Xxx

Just waiting...

Sorry i haven't blogged in a while, but iv had nothing to blogg about! 


I came home on the 19th May and have had one clinic since then..which is very good for me because normally now im starting to get ill and getting ready to go back in to hotel Pappy. 


My weight is just going up and up!! I cant stop (nor do i want to) it! Its amazing, having this PEG put in was the best thing iv done, so glad i did it too cos i got to a point where i really didnt want to go through with it..But its in and it works :D I was 6 stone on April the 23rd, and today im 7stone and 7lbs :D a stone and a half on!! wooo! The transplant team wanted my weight to be 7 stone before they do anything else... I rang them 4 weeks ago to tell them i was at my target weight now and they said they would phone me that day and tell me whats going to happen next.... i still haven't heard a thing from them!! I rang them twice more and they said the same thing 'we will ring you back' and nothing. So i rang again today and got the same thing said, im not happy now, iv waited 4 weeks to find out what to do now and in them 4 weeks i could of had tests done and be out on the list by now! Its time being wasted. Iv done what they wanted me to do now its there turn. Im starting to think il never get on the list now.


Iv been using my Oxygen when walking for long amounts of time now, Me and Ben went Cambridge shopping and i used it then, brought myself a new bag for the Oxygen cylinder to go in :) I was nervous using it, i had visions of people staring and pointing at me lol but it was okay, i had a few looks, and had two women just stating at me as they walked past, then even turn around to have another look! that got Ben a bit angry, but i was okay with it which surprised me, i thought i would be breaking down in tears lol but i was doing good with it, keeping up with Ben walking normally not stopping or sitting to catch my breath and i even tackled the TOPMAN stairs!!! i hate these stairs and always avoid using them, but i done it! Got all the way to the top :) And we walked back to the car, normally i have a massive coughing fit where im sick from doing so much walking but nothing... not even a tiny cough :) it does help massively. I just got to use it around town next, haven't used it in front of people i know from around town yet, or sainsburys... thats my next step! 


Oooh we've ordered our new Car! Were getting an Audi A1 sport :) its sooo nice, we went for a test drive the other week and to pay our deposit, £849 for a £17,000 car isnt to bad! lol The car is all ready for us and we can pick it up on the 25th July :) were just thinking of a name for it now...Obviously has to be named after someone from Harry Potter! So far we have Albus the Audi... lol 


Nothing else has happened really, just going to keep bugging the Transplant team with alot of phone calls until i know whats happening next :) 4 weeks out of hospital now and still feeling good, next clinic is on the 2nd July, hopefully by then i will know whats going on :) 


Thank you for reading again :) xxx

10 Days Done!

Home time!! Il be finishing my 10 day stay tomorrow, will be leaving early once my morning dose has been given :) Home early and then make some cupcakes!! 


This stay hasn't been to bad, i haven't been on a drip at all so iv been able to walk around and get out and about, my dad come up wit my two brothers last weekend and we went out to the lake here at Papworth then went over to Cambourne to take the boys to the park, we then had a picnic, but had it in the car as it was to cold to eat outside! lol 


I had my PEG changed to a button, although they now call it a mickey, i like button better :)
i only took 5 mins to do and the surgeon was really nice, i had the same surgeon that put my PEG in do it. I just layed down and covered my eyes so i couldn't see what was going on, he took my PEG out which felt very weird, the had to measure my hole to see what size button to put in, then he put the button in and took my stitches out and it was done!! It looks and feels so much better! Here a pic of the PEG and now button :)

My infection levels have gone down to 15! which is brill, there ment to be under 10 so not to far off :) Also!! my weight has gone up again! Since the 23rd of April iv put on a stone!! :D :D i only need to put on 2 more pound before i can contact the Transplant team and tell them im at my target and they can do a few more test then hopefully il be on the list!! :D I get so exited when i think of it, but then my stomach fills with butterfly's. I could be on the list by July. I could have new Lungs by Christmas! :O Scary! Iv been thinking of what i would like to do after transplant...The thing on the top of my list is go to America!! Iv always wanted to go and it would be a dream come true... travel around for a few weeks with Ben :) Then i have been thinking of a job?, or i could go to uni? I think i would like to move out of haverhill tho, not to far cos i don't want to be to far away from my family.. Ooo i get exited thinking about it :) 


Il have clinic in 4 weeks time and will do my Lungfuction which i haven't done since April cos of having my op. And hopefully then il be in touch wit the transplant team :)


Thank you for reading! xxx

Chubbs!

Yay my weights finally getting somewhere! Two weeks ago my weight was 39 kilos... Now its 43.8 kilos! yay! Thats 6 pound on :) i have been eating quite allot lately, iv been finishing my meals which doesn't happen often. 3 meals a days plus snacks, plus my 2000 cal of fed a night...im doing well! Which now means im only 4 pound off going on the Transplant List!! :O :D Its so exciting but i get butterfly's every time i think about it ! I could have new lungs by Christmas!! 


Im of home on Saturday, this visit hasnt been to bad, iv been home quite allot anyway though it.. off home tomorrow for a bit too! Make some yummy cupcakes :) 


Only a mini update today... Ohh also my bestie Sara is in a music video!! Shes a star! If you have a minute go onto youtube and search 'Van Susans- Firework' :) Such a lovely song :) Thanks for reading! xx

Since my last blogg..

Since coming out of hospital 2 weeks ago, iv had some news in the family which has devastated me, i cant see how i will cope. I don't think i will ever learn how to either. It has been a horrible time at home, family being down and upset, seeing family members cry who iv never seen cry before. Plans being made, thoughts being said out loud. Its just horrible. Iv told myself to be strong and just smile, but i cant and iv admitted that i need help and iv been put on some tablets to help my mood. Im also going to be seeing someone i can talk to, to try and help me. And im okay with this. think it will help me allot to vent to someone i don't know. Its okay not to be strong all the time, everyone needs a break from it now and then.


Well due to this i haven't been eating well although im still doing my feeds i haven't put on any weight. My infection levels went up to 75 last week but this week they have come down to 55, but as my doctor has said, its best to put on my IVs for 10 days to get the infection level right down to help me get to my best for transplant. So im now in Papworth, on 3 different IVs 3 times a day, BUT they don't take long to do and the doctors have said i can go home during the day if i wanted too! So now just have to wait for pay day for petrol!! 


Also since my last blog i had my 21st Birthday!! YAY! finally an adult!! :D I went to the Harry Potter Studios with Ben, i was amazing, we were both star struck really! Was amazing to see everything they had and walk in the same places they all had! Then at the weekend me and Ben went to my nans and granddads caravan in great Yarmouth for the long bank holiday weekend. It was freezing! Ben got a cold while being there and my PEG played up abit, was very sore to walk and the first day i couldn't walk anywhere. But thats better now. We had heaters on and heated blankets, but was still cold, and the coldness of outside and the heat from the heater was making me cough and making my chest feel quite tight, so we came home on the Sunday but was nice just get away, we had a nice time watching the football and making nachos and watching films with lots of rubbish food :) 


Now im still trying to put my weight on, and iv got a target set. Its my uncles wedding end of this month so i need to look good to get a nice dress on...get some chubby legs out ;) 


Thank you for reading again!! xx

Nerves!

To be honest im a bit scared about going home now. How will i cope with stairs and getting around? Will i struggle? Will i need to use Oxygen every time i want to leave the house? Some many worries at the moment...

Last night i had an Oxygen test to see if i need oxygen while i sleep. I didn't get much sleep as i kept waking up seeing what they where all night!.. Turns out i don't :) My o2 levels are 89-91% at night so that's all good! But when i walk they have been dropping too 88%. And the physio have said for me to use it when getting around. I will try when im home and go around without it see how i get on, but il make sure its in the car so i can quickly get it of needed. Im off to Cambridge Saturday & i wont have the oxygen by then so i will take my time and maybe sit for drinks every now and then..BUT I will get my Bunny this weekend! lol 

I had my PEG loosened yesterday, its a bit sore again now, had it moved around, i didn't want to look while the nurse was doing it, but i did.. and at the wrong time, was all scabby and gooie! Yuk! Il have to do this once a week at home myself. But it will be changing to a Button in a few weeks, which will be much smaller and will have no long tube hanging down. I keep sitting on it and pulling it, that does hurt! 

Today has gone soooo sloooow! Iv had 5 naps to try and pass the time! But i will be out of here tomorrow by 1 O'Clock!! :D :D :D Cant wait to have real food! Iv got new jammies waiting for me at home and a new bed set, can not wait! Also can't wait to wake up to Ben, its feels like forever!!   

Thank you again for reading & a big thank you to everyone who has shared my blogg, iv had so many messages from people, your all to kind. :) xxx

Home time!!

Im finally aloud home!! :D YAY! Im packing ready for Friday :D 

So this week again, has been and up and down week. I got sent down for a chest X-Ray which is a normal weekly thing. I had it done went back to my room and was sitting talking to a nurse when my Doc came in and was holding my X-Ray form. I knew something was wrong then as they never come and tell me how my X-Ray is straight away. He told me i had air in my belly and i needed a CT scan, i panicked straight away and i asked him ' Will it kill me' ..which now i hear myself saying it i sound so silly, he laughed and said no he said the air is under my diaphragm which means it cant get into my chest. So they wanted me to have a CT scan that night, i only waited about 20 minutes before i went down for it, i had to have a cannula put in because the CT scan i was having i needed dye put in me so that it could highlight my belly area. Im not going to lie, i was scared only because i was on my own, one of my nurses came with me though and shes lovely so made me feel more relaxed. The dye was a weird feeling, made me have a hot flush and a horrible metal taste in my mouth and as the hot flush passes down my body it goes to my legs which made me feel like i wet myself !! Was so strange! After that i went back to my room and just sat there panicking, waiting for the results. He told me that if the air was infected in my belly then i may need to have surgery. About half an hour later the doctor came back and told me its not infected so no surgery will be needed and the air will just go on its own, it will just dissolve into the tissue in my belly. I can feel a little pop every now and then, feels very weird! 

Iv been walking lots with the physio but have been on oxygen while doing it. So the doc has said he will be sending oxygen to my house for if i need it, getting breathless walking around or coughing and getting breathless. Im happy its going to be there just incase though :) 

SO thats my week again! Always full of drama! Hopefully my next blogg will be from home :D  xxxx

I would just like to say aswell one of my friends passed away today and it has been very sad for everyone who knows her, she was such a strong brave woman. She helped me alot with anything i was worried about. Its horrible aswell as she was in the room next door to me and i couldnt see her, my thoughts are with her family and friends <3 xxxx

22 Days & Counting...

Wow nearly been in for 4 weeks!! 


So in the last week iv had my PEG done! Yay! Finally i have it in me and have started my feeds, i started on a low dose and then everyday they have been getting higher and higher, im now on 2000 calories a day :) 


So the day of my peg came.. i was told it would be in the afternoon sometime, they didn't have an exact time but when they said afternoon i thought it would be roughly around 2 or 3. I was in the middle of having physio at 11 when all of a sudden a load of nurses and the transport man came in ready to take me down to have the op, before the op i am ment to have a shower with some sterilised shower gel, and the nurses hadn't given me that yet so i couldn't go down, as well as that my nan and grandad hadn't shown up, they were coming down with me. My mum couldn't come with me as she and my step dad got a stomach bug. So i had to rush my shower get into a gown, i have to add i was quite tearful and in quite a state! 


My nan and gramps showed up just in time to come down with me, so that relaxed me a bit.. i was sitting in a wheelchair in the ambulance thinking of how this would turn out, was i going to die? would i have a lung collapse? would it just not happen again? .. I didn't think for one second it could go smoothly, because  honestly nothing goes smoothly for me. When we got the the part of the hospital where i had to go in my nan and gramps weren't aloud in there, so i had to say my goodbyes there. They waited for me outside until it was done. I then went into a room to be asked lots of questions, allergy's, weight, all the usual - Then i was taken to another part of the ward bit, into the room id be having my op. I had to sit on the bed and wait till the surgeon came, but i just couldn't move from the wheelchair, i was stuck, i was to scared to move. 'If i move onto the bed that means its really happening. I could die.' Thats all i could think about. But then i took a deep breath got up and moved to the bed, i layed down and they had to put a heated blanket over me as it was so cold down there. As i was so nervous and just couldn't talk they suggested i have a little sedation to calm me down. 


I had the sedation and was so relaxed after, i love that stuff! .. I don't remember what we were talking about
but the nurse soon reminded me later on. Anyway, i was waiting for an hour and a half before the surgeon came, and because of the sedation i don't even remember him coming in the room!.. Next thing i know is im waking up and everything just felt so rushed, nurses running around everywhere, things beeping, i got scared! Was i okay? did i have it done? did something go wrong? My CF nurse came over told me everything was fine, i had it done! i couldn't believe it, i was so expecting something to happen.. i kept asking her, are you sure? lol While i was in recovery i got very hot! And i wasn't aloud to drink anything for another 3 hours,  
but as i was sweating they gave me a sponge on a stick to dip in water and stuck on. I was then moved to the transport van ready to go back to my bed, they told me nan, gramps and my dad were there waiting.. I should mention that i never swear in front on my family, i never have! BUT when they brought me into my room i saw them all there and said 'piece of piss' .. The GA they gave me had made me very 'high', i was buzzing! .. I don't remember allot, but the nurses have told me i was hilarious! Worries me as im not at all lol so no idea what i was going on about... Anyway the GA wore off a few hours later and i was in so much pain! I wasn't aloud any painkiller tablets as i wasn't aloud to drink. And i wasn't aloud it through drip as i already had some before i came back to my room. But i couldn't wait an hour and half till i was aloud so they gave me morphine, only 10ml but it helped so much! The pain was still there but no where near as bad as it was. 

Over the next few days i couldn't move alot, i was to scared to move in case it fell out, or i feel and hurt it, but i needed to start moving or they wont let me home! I had been on oxygen since i came out as my o2 levels were 84-85%, they should be over 90%.. 


But today i have done walks, sitting up straight, coughing without it hurting and best of all my o2 levels are 90% :) so no need for o2 all day,but im still going to use it whenever i feel a bit breathless... So Thats my week! I should be home hopefully next Monday, that will be my 4th week! So i really need to get home! 


Thank you for reading again :) really means alot to me, and thank you for all the messages of support over the last few weeks! :)

New Blog!

Iv started a new blogg.. This one shows me how many people read it so I can see if its worth me doing it really, I havent really got used to it yet so it still looks very plain and boring! But hang with me il get it looking pretty soon enough :) Not much has changed since my last blogg, My CRP (infection level) Has gone up to 220 when it was 60 and its ment to be under 10... But i have a bit of a cold at the mo, so hopefully that'll be down soon :)... Thats all really, very fun filled life i have in hospital, no gossip at all!! But if you have any let me know ;) 


Well thank you for reading again :) 


xx