Sunday, 24 February 2013

Part 2 - February

Heres part two as promised!

So i came home on feb the 1st and was so so so glad to be in my own bed! I'd forgotten how comfy and cosy it was!! But as i had IVs to do i had to stay up late to do them... after they were done i hurried upstairs to my bedroom and fell straight to sleep. Up early the next morning though for more ivs, but i did have the best sleep id had in ages!

Im not sure if it was the fact id been sitting around in hospital for a whole month or not but i was very breathless, just walking around the house was hard. I couldn't face going outside walking cos id know i couldn't do. So i went to hospital for my clinic 5 days after being out of there and they wanted me to come back in the following day for some more treatment and physio using the 'Bird' which im not sure if i explained what the Bird does, while im having physio i use this as it pushes air into my lungs forcing my airways to open up and my mucous to shift and become loose, so its easier to bring up .. Yuk! not a pretty description! lol

So I was back in and put in a small corridor room, which didnt have a bathroom or toilet so i had to share one with the other patients. Which i wasn't happy about because of cross infection but hopefully i was only staying there a few days, which i did, i was moved to my normal room a few days later. So as many of you may off seen i was on telly last week for Organ Donation awareness  From The Heart!!! On ITV news! My Dr told the team id be up for an interview with them which i was, i was more than happy!I meet the ITV news team, they were all so lovely and nice, They filmed me and told me they would edit it ect and id be on the following week... But once we had filmed the piece they were so happy they asked if id do a LIVE interview with them! Ahhhhh! I was so excited! they came back the next week to do the live interview. I was so nervous! i couldn't sleep the night before because i had no idea what i was going to be asked... and of course my hair wouldn't go right that day! lol  They came and set up about an hour before and Lawrence McGinty asked if i wanted to do some practice questions...YES! lol that made me feel so much better and i relaxed a little bit...The interview was over so quickly, i ha such a good time doing it...and the amount of lovely messages i received after was overwhelming. My phone was going off up until about 11 that night... texts, calls, facebook & tweets! So many!! lol  It was so lovely to be a part off! in that one week They had 147,000 people sign up to become an Organ Donor!! So well done to those who did, and those who didnt do it now!!! lol Il put a link at the bottom off this blog for you ;)

here are some pics ...

 Behind the scene look 
 From the Heart pose
 In the daily Mirror!! 
A Valentines card from the ITV news crew! so nice :) 

Sign up here - 

So after that bust few days.... I was there for about a week and they said my infection had gone from 70 to 18 so i could go home on IVs again! So im home again! the IV times were better so i was sleeping alot easier.... after being on IVs for 5 days i had clinic again but this time they said i could stop my IVs!!!! Yaaaaay! i was so happy! After my Dr telling me i wont be coming off IVs ever this was great news!

Its now been 6 days off IVs, and strangely im doing well! Iv put on weight, i feel good and im not coughing alot. Its been such a good week :) Iv have been going out and when i know il have to walk far iv used a wheel chair! Iv used it a few times this week....Once with my sister, she pushed me around like a loonly person! She was going about 100mph! haha

Iv got clinic tomorrow to see what to do next but hopefully they will see im well and let me stay off them for an extra week :) il update after!

3,828 hours on the transplant list

Sunday, 17 February 2013

Part 1 - January

Iv been so bad this year about updating my blog, i am sorry if you have been waiting for a new update. This year has been so ... hectic! So much has happened and its only February! Il do my blog in 2 parts, January and February. So part one -

Well I had a wonderful Christmas, had such a lovely time spending it with my whole family, Ben and his family. I did push myself to much though, i have to remember i cant do things normally any more, but i was running around nearly everyday, not sleeping long and not eating much so of course it caught up with me, On the 29th December I had plans to see my friends Stacey & Sara, we planned to have a Harry Potter day and  to pig out on sweets. So we went to Tescos BUT i was so tired i had to wait in the car while they got to food. Then once we got to Saras we put the film on. Sara gave me a pillow to lay on and oh my goodness it was the most softest, comfortable pillow i have ever felt! I couldn't help myself, i tried to stop myself but... i fell asleep!! When i woke up i couldn't believe it, i have never fallen asleep like that before, i really was tired and really need to rest. The next day i spent all of it in bed. Sleeping, sleeping and sleeping. Then on New Years Eve i woke up still feeling awful, i had a family party that night too so i wanted to be well enough for that. But then i got a horrible shooting pain in my left shoulder, the pain wouldn't go, when ever i took a breath in it was the most harshest pain iv ever had. I had to ring my CF nurse and let them know. I thought to myself that its a collapsed lung, iv heard how painful these could be and i just knew that this would be that. My nurse told me to come in to have an X-ray and start IVs  So obviously i was panicking and was in a right state, i couldn't even pack my suitcase, Ben came up and got me ready and packed for me. We then left to go Pappy, my mum had cancelled the family party she said they didnt feel up to it now i was in hospital, i felt so guilty that i messed up everyone's new year plans. So got to hospital ( i had been on oxygen since i woke up, felt to scared to go without it ) slowly walked up to the ward and then all the tests started. Bloods, X-ray, drs checking me over.. all that jazz. My dad then took a sort day at work and came up to wait with me and Ben to see what the x-ray shows. I had my fingers crossed the whole time. I always crossed them whenever i get scared lol. So Dr came round and said there's no collapse!! Yay! such a relief! The pain i was having was a pulled muscle from coughing so much! Couldn't believe it, but was so happy lol  They wanted to keep me in hospital for IVs as i had a temp of 39.

So spent my new years eve in hospital, in bed and asleep before 12! haha. I know how to party!

Right next, i was packing my suitcase all ready to come home after being in hospital 10 days... but i woke up the next day with an awful cough and a temp of 39 again. So the drs didnt want me to leave. My infection level should be under 10, and the day before i was going home it was 12. BUT that morning i woke up it was 170!! The nurse that had been looking after me had a cough/cold. She wasn't wearing a mask, gloves or apron. So i think i caught something off her, i did complain to my Dr and the head nurse, but they didnt really say anything about it.

After a few times of changing my IVs they said i could go home, but again on the morning of going home i woke up, coughed, but this cough gave a horrible sharp pain in the top right of my chest, after i finished coughing the pain had gone. So i felt fine to go home. But the drs wanted me to have a X-ray first. So i went for my X-ray, came back to my room and waited to hear what it showed. My Dr came in almost straight away and told me i have a mucus plug in the top right of my chest. He said i need lots more physio and would need to stay in for a while more. He said that this plug could go but sometimes they just don't. So i unpacked again! I had been in 3 weeks now. Was so very fed up, and getting very down. I had lost weight, not eating alot and having horrible thoughts. So a week later they said i could go home! finally!! I went home on the 1st of Feb so i had a whole month in pappy! I went home on IVs though. They said that they want me to stay on IVs permanently now, so now me my nan and gramps do them at home :) we have a little system weve made up so it doesnt take up to much of my day which is lovely! i can go out for a little bit and feel normal! My IVs are 3 times a day. 10-4-10. so there not to bad!

Right thats the first part of this year, il do part two soon and as you may know.. Its very exciting! Hehe

3,652 hours on the transplant list.