Great ormand street and RIP Lizzie!

hello guys, i don't even know how to start this! it has been a hard 14 days since my last update! first of all my CRP levels came back and they were 126!!! which is very high for me! so i had to go to the hospital to get checked over, and he said i looked well even though my CRP levels were so high, so he let me home again but i had to be seen by my nurse most days to check my CRP again, so i seen her and we checked it and it came down from 126 to 115 then to 76 and we checked it thursday and its finally down to 44! which is really good!! i'm eating and everything now! my weight is 30.7kgs again! :D it looks like im having IV's permanently from now on untill i get my transplant, just sometimes having 24 hour breaks so my port doesnt get to sore!


Rip lizzie 

and secondly.. my friend lizzie andrews gained her wings on Saturday evening! she had CF too, she was waiting for a transplant like me, lizzie was such a bubbly happy girl! she was just an amazing girl, i don't think ill ever get over the fact i wont get to ever speak to her again! she use to help me out playing animal crossing, i will never ever forget lizzie! but now she is with Lucy and they can chat away like before! i hope they are both with me when i finally get my lungs because i need there help to get through it! loosing Lucy and lizzie has been very hard! when i found out about lizzie passing away i was in Butlins for a mini break with my dad and when my dad said there was some bad news i didn't know what he was going to say but to say that she had died was just such a shock! i just burst into tears! but she fought for a long as she could! im going to miss her millions!! this is why people need to sign up to be a organ donor! Lizzie shouldn't of died so young! you could save up to 8 lives! don't take your organs to heaven, heaven knows we need them here!


Great ormand street
i went to great ormand street monday for a 6 month review and you cant go to London without a bit of shopping can you!! yeah so we left monday at like 12 and got there at 4ish then went shopping and mum and dad bought me lots of nice new clothes! and then had Chinese! :) on tuesday was the first day in great ormand street and i had a x-ray, bloods and lung function and my lung function is 16%!! in december it was only 12%! that is amazing for me! :D the x-ray showed the same as last time really so no change there. We finished at half 1 so we had lunch and then we went to LOOK at the London eye and had ice cream! :) we walked over this bridge but me an mum are afraid of heights so it was scary haha! we went back to our apartment and chilled for the rest of the night :) today i had to have a GFR test, it is a kidney test and you have dye put through a cannula in your hand and then you have blood test after 3 hours then 1 hour after that, i wont know the results for 3 weeks, we also saw dr. whitehead he is one of the transplant doctors, there isn't really any change just need to keep waiting for my new lungies! they said there have been offers but unfortunately i have been too small for them :( then we finished at half 1 again so we drove home and after 6 hours of my dad driving home we finally got home at 7 :)

ill probably write again soon! i promise i wont forget! theres not much that goes on thats why i don't write a lot haha!!

1 year, 1 month and 17 days on transplant list..x

the longest time I've been home! :D

im home! ive been home for a month now! :D we had to go up to see the doctor on the 6th junefor a check up as i have to go up twice a week just to get seen to make sure im okay, i got weighed and i was 29.7kgs! :( i had lost weight in 4 days from 30.15 to 29.7kg because i hadn't eaten properly! my appetite was completely gone! i was being sick too. so Dr Dalton(my doctor) said i had to have over night feeds again, and i had to have to put weight by the following Monday or else i would of been admitted, we did the overnight feeds for 4 nights but i was waking up being sick in the night and my stomach felt like it was going to explode and i was having really bad pains:( so we decided to have 3 fortisips before i go to sleep, and that was still playing with my stomach! so im back to square one having no feeds! Just drinking the fortisips during the day! I've been pretty well recently that's why I haven't been in hospital and to be honest I've had enough of being in hospital all the time! I know it makes me better but I'm just fed up of looking at 4 walls all time :( I will go in when I know I'm quite ill and need to go in though! I finished ivs on 24th June I was on them for a month, but on the 24th me and my mum was interviewed to be on the spotlight news for CF week!! The interview was hard and I did cry! It was on that Monday night but I didn't get to watch it as I was on holiday!! :) I went to butlins for the week! So that Monday was a busy day as I had the interview then went straight on holiday! I had a great week, we went on family bikes, went in the skyline most of the time to wins tickets and stuff and I got 6000 tickets!! I got a massive slipper to put both my feet into whilst I sit on the sofa and chill and also I got a lava lamp :) they were 3000 tickets each, we also went to town shopping, my step dad did a bungee jump haha! I had chest pain whilst I was away and I was very tired, we was going to come home a day early as I didn't want to stay and I was going to see my doctor, but in the end we stayed because I felt abit better later in in the day :) when we came home Friday I could finally watch the news and it was a good piece! everyone was writing to me saying they was crying and how strong I am! I just want to thank everyone who did message me! I look so different on telly and sound really different! Monday my nurse came to my house to make sure I was ok after the holiday and said I needed to start iv antibiotics Tuesday and I have! I was meant to go into hospital to start them but I'm well enough to stay home for them! :)

Don't think I have anything else to write! Just thank you for all the messages I get! it meant a lot!

1 year, 1 month and 3 days on transplant list..x

1 year on transplant list!

hello everyone! ive made my blog look abit prettier since my last update! :) when i wrote last time i was in hospital for about a week, then i came home for about 2 weeks and didn't really do anything just my usual, wake up do my nebs, treatment, tablets, eat, watch telly eat more food, physio, bed again and go into town some days with mum, i went for a check up on a Sunday and they said i could come home again but i went back up on Tuesday to stay in because i wasn't feeling good and my doctor wanted me to come in and plus i was on 2 and half litres of oxygen and we needed to get it down so i had to go on high flow for physio but i didn't do it for long as i now have a bit that links onto my oxygen so it humidifies the oxygen and puts moist into my lungs to bring up the mucus, and fortunately its worked and I'm on 1 and half litres! :) im still in hospital but at the minute im home for the weekend which is good! my co2 went up abit so we had to turn up the pressures on my bipap so now my co2 is down again, ive been on IV's for like a month now! my doctor said im probably going to be on IV's constantly and in hospital all the time soon! the team from exeter hospital came down to see the CFers in my hospital because they are involved in us now, and all i got told to do was put on weight!! its so hard though! im 31kgs at the minute but i would love to be 35!! when i have a feed i get so full and don't eat for the rest of the day so that doesn't really help! my appetite isn't very good at the minute so ive been having fortisips down my feeding tube! i will hopefully put on weight soon though! ive been on the lung transplant a year yesterday, its been such a hard year but ive got through it! i will fight it another year if i have to, i will do anything to get these new lungs! im going up to great ormand street hospital in the next couple of weeks hopefully for a 6 month check up and to ask them where my lungs are?!?! hehe. hopefully i get to go home for more than a couple of days soon!


1 year 1 day on transplant list..x

Plymouth and hospital..

I haven't wrote anything for nearly a whole month!! well everything is still going ok! Im still very dizzy all the time but the doctors have said it is because of all my IVs I have and it's effecting my inner ear and my balance so that sucks abit :( I went to Plymouth for the weekend on 3rd may as my wish with my mum and 2 sisters!! It was an amazing weekend!! we had room service both days, we went shopping friday and Saturday and we did face masks, went on the hoe and looked at the plymouth eye, we didn't go on it because we are all scared of heights, even though I've been on the London eye before, just with my dizziness I didn't want to go on it haha! On Sunday we went to the aquarium and seen some fish and sharks! then we came home after the aquarium as I was getting tired, I slept most of the car journey and when I got home I went straight to bed to chill, Monday i went town with my mum and then went to the park with sister and my my nieces and nephew, Tuesday I went to my other sisters for tea and to see my nephew bailey :) Wednesday i had an hospital appointment to see my doctor for a check up and because I'm feeling rubbish and my chest is rubbish at the minute he admitted me into hospital and that's where I am now! My crp is 93 :( I'm getting headaches again but my co2 levels are fine :( my chest hurts, I want cf to leave me alone really! but that isn't going to happen until I get my new lungies! yesterday i went out for the day with my dad and went to trago mills and did some shopping :P today I came home for the day but... I now have an IPad mini!! :) my mum and dad got it for me today and I am typing this on it now! I love it :)

11 months 12 days on transplant list..x

everything looks like its moving.

helloooo! :) I'm sorry i haven't wrote for a while i have been quite bad, BUT NOT WITH MY CHEST! I've had sickness and dizziness, I've had it for 2 weeks now but I'm finally eating again now, as i didn't eat for a whole week but i was having my feeds through my feeding tube, I'm still dizzy but the doctors think i have a inner ear infection and have vertigo, so I'm seeing a E.N.T doctor this week, I'm in hospital for a couple of days to have some IVs but I'm only staying until friday hopefully, as my chest is pretty good at the moment! i came to hospital last week to get checked over and my CRP was only 10! It hasn't been that low for a whole year! but I'm having IVs now so I'm well enough to go on holiday with my mum and 2 sisters on the 3rd may :)

ive had some good news too! :D I've been told i am on TOP of the transplant list! so as soon as their is some suitable lungs they are mine!!!!

I don't have much to write anymore as its always the same, come in hospital for IVs, go home for 2-3 weeks then come back in! i cant wait until all this is over and i can enjoy my life! run around after my dog, go to paris! maybe even america, go to college and do my photography course, just have fun. :)

10 months 15 days on transplant list..x

hospital

heyyyyy! my CRP went down from 46 to 28 and saturday it went back up to 49 because i caught a cold in hospital! and so did my mum! i had a x ray and a mri scan, the x ray was a little bit worse but thats expected and my mri on my brain was ok! :) i hated the mri scan, they played music but it was like old music and i could hardly hear it as the machine was so noisy! it took 20 minutes! i have to go see an ENT doctor now i had the scan to see if i can hear properly as some of the medicine can effect your hearing, also i did a lung function test and its 12% but it was 13% in december so it hasn't gone down much! The doctors put me on ceftazidime as i had a cold, I hardly ever get colds! so now im on colistin and ceftazidime. My weight was 31.85 last week bur now its 31.25 :( but atleast its still in the 31! i am now on bipap all night andnot using it for physio anymore as my co2 levels were quite high in the morning so it showed i needed it at night, the first night i tried it i could only use it or 2 hours, then 5 hours, then eventually i got up to 9 hours! :) and now i don't wake up with headaches anymore and my co2 levels are back down to 7! I'm home now finally! I came home on wednesday still on IVs and using bipap at home all night felt so weird! but i did it! :) my oxygen is great now! Using bipap had made me go from being on 2.5 litres of oxygen to 1.3/4 i was so scared to use bipap as i thought when it was time to go on that then things are very bad, i need a transplant quite bad yeah but being on bipap doesn't mean its over! It just means you need a little help! :)
now to the more exciting stuff., me, my mum and sisters have decided London is abit too far to go for me to be travelling so we are going to Plymouth for a couple day days in the first week of may :)
Thats it for now blog readers :P

9 months 29 days on transplant list..x

the exciting life of being in hospital basically all the time.

Helloooo sorry i haven't wrote for a while.
sooo... i finished my last course of IV's on the 4th and i still didn't feel myself but my doctor said to still come of I'V's and go on a course of co-trimoxacole and he thinks im becoming resistant to  meropenem and amikacin which isnt good :( and i still felt unwell on friday so i had to go up to the hospital to get checked over as I've been getting LOADS of chest pains :( but my bloods were fine! my CRP was only 28 i think so they let me home. I'm came back in hospital yesterday as i have to have another course of IV's but this time im on colistin IV & tobramycin nebuliser. Last night i took some beater blockers to make my heart rate slow down as my heart rate is quite high and they've worked abit so thats good :) my CRP is 46 so i have an infection but its not as bad as last time thankfully! and today they took blood for a gas, this tells us what my carbon dioxide levels are, they are usually around 6 but mine is 8.9 so i have to use my bipap more often and soon i will have to use it at night time, but its so hard to get use to! the mask has to be really tight and now they've added a humidification bit so it can add moisture into my lungs to make it easier to bring up mucus and that is warm so its really hot under the mask! but i will get use to it!! :)

oh yeah.. I put in a wish at 'Raise of sunshine' and i wished to either
- meet one direction
- have a apple mc laptop
- go to london with mum and sisters
and the day before i came into hospital they rang and said.. I COULD MEET ONE DIRECTION ON SUNDAY IN LIVERPOOL!!! but.. Because im not well enough i cant go!! :( :( and plus loverpool is quite far away so i would get so tired in the car but i was soo gutted when my mum and nurse said i couldnt go :( BUT I'm getting a signed one direction picture sent to me!!! so i chose for me, my mum and 2 sisters to go to London for a weekend and were going to go on the London eye, go to madame tussauds and GO SHOPPING! they're giving me spending money to and were staying in a hotel and they pay for food to! they need 2 weeks notice so were gonna wait until I'm better :) 

ill update again soon, thank you for the messages and support

9 months 15 days on transplant list..x