Portacath Operation

Hi  :) we finally went to Bristol on Friday 7th by ambulance, the nurse came in at 8:30am to tell us -.- i was so tired haha, we went up about 11:30 ish & got there about 1:45, we went threw A&E because you normally do, the paramedics took us to our ward, we was on ward 38 - the medical ward. When we got there it was really busy, we was waiting for the doctors till about half 4! then my IV's were late at 5:00! so then they wasn't due until 1:00 in the morning! :( the doctors said i was going to have the operation on Saturday, we had to be seen by the anesthetic team, then the surgeon & then we got a time, it was at 12:00pm on Saturday. But saturday came and they said i needed a ECHO to check my heart was ok to have the anesthetic, it took an hour to do, so i didn't go down to theatre until 1:15 but when they porter came to take me down to theatre i didn't want to leave my mum i was cuddling her and didn't want to let go! the nurses were pulling me of her! but in the end i gave up haha! i was put to sleep threw gas and air, witch was HORRIBLE! i was asleep from 1:30 to 3:00 witch was longer then they wanted me to be but it was okay, when i woke up i had the WORST headache ever, especially because i hadn't drank or eaten anything that day & the anesthetic gives you headaches, but i couldn't see anything for a couple or seconds, my legs, arms, head was so heavy! my throat was really hurting because of the tube i had to have down there, i was in so much pain where the port had just been put it, i was on 5 litres of oxygen, then my dad came to the recovery room and i was so glad to see him i didn't want to let go of his hand! i was abit happy after as i was on so many drugs haha! but i went back to sleep again, when i woke up i felt better & i drank loads of water! & had a jam sandwich & my oxygen was turned straight down to 2 litres, but i could hardly move as it hurt so much:( but as the night went on i started to feel even better, so i watched X factor, i went to sleep early Saturday i was so tired & i slept all night! we woke up Sunday and the doctors came round and seen how well i felt, so they said we could come back to our main hospital :) we left Bristol about half 2 & got home half 4, I'm still in alot of pain but I'm doing okay :) & the doctors are on about sending me home Friday :) i cant wait to get home and see my dog!! i miss her so much! :(

thank you everyone for all the messages! it means so much!

the wire is right over my bone on my neck:(



me after the operation.

bristol & NDDH

hey guys! :)
sorry i dont write much but i keep forgetting!! soo..
over the past couple of weeks i went to see peter andre!! he was AMAZING! but we had to come back on the sunday as my long line broke:( so i had to come back to my hospital to have it taken out.
couple of days after we got a call from my consultant telling us we have a date to go up to Bristol to have a portacath put in again & that date is 4th December, which is tomorrow! we put our Christmas decorations up & our Christmas tree because i had to come in hospital for IV's so I'm well enough to have the operation & i wouldn't be out of hospital to at least the 10th, I've been on IV's for 6 days now & I've had 3 canulas:( they always brake! i was meant to go to Bristol yesterday but there was no beds so I'm hopefully going up today!
ill update you more after I've had the operation and I'm well enough, as my lungs are so poorly they will take longer to recover from the op, but I'm still fighting this illness & i wont stop until i get my new lungs!

Peter Andre! :)

our Christmas tree :)

me and mum ready for Peter Andre.

hospital, portacath & PETER ANDRE!

hello guys! it has been a long 2 weeks or so! i started IV's at home and i was okay for a couple of days. but a week into it i didn't feel well at all! i had a temperature, my SATS were low, i had chest pain, so i had to go up to the hospital for a check up & ended up staying in, i had a few blood tests & blood culture & a couple of days later those bloods came back & the doctors said i had an infection in portacath line! i have had this for 7 weeks!!! they didnt think to check my blood cultures at the time! so i have been unwell for 7 weeks and its because i had an infection! they said the only way of getting rid of it was removing my port line, but a couple of months ago they told us i wouldnt be able to have an operation again before my transplant as my lungs are to poorly! but i needed this port out, the only option was to be awake when they took it out!! i had the operation Monday at 3:00pm and it was an hour long, it was the longest hour of my life! i didn't feel a thing as they injected local anesthetic, but injecting that was SO SHARP! i cant believe i stayed awake for it! my nurse Jan came into the theatre room with me as i didn't want to be alone, and she was telling me what the surgeons were doing! taking out the port was only 10 minutes! but they had to put a long line in for me to have the rest of my antibiotics! and they had to try twice! that was the worst bit about the operation! it was so painful, later on that day i was out of my bed and walking around!! but yesterday and today i don't feel very good, just really tired and pain in my long line, i had more bloods done today to check if the infection has gone down, and it has i will be able to go to my Peter Andre concert i have on Friday to Monday! im so excited!! but i want to be as well as i can! so i hope i feel better tomorrow!  

in 2 weeks i can go up to bristol to have my new portacath in! but i have to be asleep! they know its a risk but i really need a port! but im in safe hands :)

we had a letter threw from great ormand street and we have to go up for a re-assessment on the 20th December!! so close to Christmas! but im still going shopping! ;)

pain, pain and more pain! & the sponsered walk! :D

since my last post i have not been well! i had to go to hospital to see a doctor and she wants me to have IV's again for 3 weeks! ive only been of them for 1 week!!! :( and also there was some talk about me starting BIPAP!:( i really didnt want to come that ill for it! i wanted to get my lungs before needing that!
ive had so much pain in my lungs today! hopefully my nurse doesnt say i need to go into hospital! and i really dont want to because in just over 2 weeks im going to butlins to see peter andre live! & i want to be well! :(

On the other hand, saturday was the sponsered walk to raise money for my electric wheelchair! it was such a good day! but i wasnt feeling well atall! but i wasnt going to let CF beat me that day, everyone was there for ME so i wanted to be there! all together there was 136 people!! the gazette came and took some pictures to! it was a really great day! we started at 12:00 and finished at about 3:30 because everyone stopped at the pub haha! i did half way(in my wheelchair) because it was freezing! so my dad picked me up and i went back to the start and waited for people to come back! i was suprised when eveyone turnt up! after that me and some of my family went for food, but i didnt eat cos i wasnt hungry and felt sick :( but i went sleep early that night and slept all night! i normally dont ! i normally wake up with pain and cant breathe but i didnt! :)
here are some pictures..


'round table' kindly donated £750!!

how many people did the walk!

ready to go! there was so many buggys!



my and my friends!

 5 months 1 week and 4 days on transplant list..x

home!:)

Ive been home since friday and its been so nice! been doing all my IVs and all my physio! but my mucus doesnt want to come of my lungs!:( i finish my ivs tomorrow so thats good!:)

next week is the sponsered walk i organised with my sister and dad, its to raise money to get me an electric wheelchair and what ever money we have left we will give it to my cf nurse and the childrens caroline thorpe ward in north devon district hospital. But where we are getting the wheelchair from has let me borrow the chair for the week! its so cool! I still do all my walking and physio but its so much better with an electric one, so i dont have to go everywhere with my mum, even though i love going everywhere with her!:) i cant wait for the wak! 130 people are doing it! It will be good afternoon and a laugh!

im going to write on my blog more often now! cos i used to write on it like once a month but i will try and write more!

Annual review

I had annual review today, it actually went ok for once! :) we was talking about antibiotics and physio and she said i have to have physio more and to see my own physiotherapist once a week, and she was talking about this machine that you go on in the night, it wasn't bipap but she didn't want me to start anything like that because i recently had a pneumothorax and thats what could help a pneumothorax come. I also met my new consultant, he was really nice:) and learned some new physio techniques. I have to have a glucose tolerant test, GFR, and starting vitamin K. My weight is 30.45kg, i didn't have to do lung function as was quite busy!

IM ALLOWED HOME TODAY:) and do home IVs, finish them on monday!:)

R.i.p lucy wilton, rattling and battling

Since my last post.. everything has just broke down into pieces. On 22nd september i was at the barnstaple carnival, wasn't really enjoying it because it was quite boring and i was freezing, but my mum got a phone call and she got off the phone and just burst out crying, and straight away i knew it was about my friend Lucy, she had passed away that day waiting for double lungs! Her body couldn't fight anymore, when i found out it felt like my heart had just been ripped out and i couldn't breathe! Even though i never met her i was very close to her and spoke to her everyday until she started to got worse and didn't even have energy to text! At the carnival everyone was starring at us because we was crying but i didn't care! we went home straight away! i still cant believe shes gone! I still think 'aw I'm gonna text Lucy in a minute' but then remember and just sit quietly. I miss her so much!:( i really hope she like heaven and is looking over me and is gonna be there with me when i have my transplant! Lucy was the most funniest girl I've ever met! she always made me laugh and always cheered me up! on the day of her funeral we couldn't go because there was people with cystic fibrosis going to! and didn't want to risk it as on the transplant list, but me and my family set off lanterns for her and dressed up in pink and purple as they was her favourite colours, setting of the lanterns was so funny! 2 of them didn't go up cos they set on fire and NEARLY set a car on fire! but mine went up!:) i bet Lucy was there blowing everyone else's down and just let mine go up! hehe, i hope she liked them! I will never forget Lucy, she will always be in my heart!

2 weeks ago i had to go into hospital for iv antibiotics and physio, a couple of days later, i started to feel all dizzy and always tired and fell over quite alot, they said i had vertigo, a side affect from one of my antibiotics, but they couldnt take me off it because my body is resistant to most antibiotics, so one night my mum rang my cf nurse and told her what was going on and she said take me off the antibiotic staight away and we will find another one! so we did.. and a couple of days ago i started a new one called aztreonam, ive never had this before, but it seems be going ok, but i still feel quite dizzy, just going to wait until ivs have finished then see what im like after that. it has been a rough 2 weeks:(

last night i went and seen labrinth live! he was amazing! but it was boiling in the o2 acadamy i had to go outside and get some air! we had quite a good view! :) i had a day leave from hospital and going back today:( tomorrow i have anual review and gonna see if i can come home tomorrow! :)