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! :)