Goodbye Reflux, Hello Sloppy Food

Hey!

I hope you are all well! After Disneyland I came to GOSH to have my Antibody-Mediated Rejection treatment which all went okay, I was attached to the IV pump for 12 hours and then was allowed home the next day but on the way home I became quite ill and started to get a headache and was sick, I got home and Helen rang and said my Tacrolimus level was very high so I was to miss that nights dose and change the dose in the morning. I was in bed for 2 days because I could not move as the headache stayed the whole 2 days and I would just be sick, I felt better after a few days but my appetite hasn't been very good since, I went to my friends and tried to forget about feeling ill but the morning I woke up and didn't feel well again but mornings are always worse, this was pancake day so of course I had a pancake or 2 :P

Last Wednesday I came to GOSH because I had my fundoplication on Thursday, I went to theatre at 1:00pm and came around at 5 o'clock ish in a lot of pain and had a NG tube down my nose, I basically slept for the rest of Thursday and the whole of friday(i do that after any anaesthetic haha) I got out of bed on Saturday to walk and it felt like Transplant all over again, I was dizzy my legs felt like jelly and I could hardly walk, I have to have a sloppy food diet for a while now, but I'm feeling fed up of it already haha! I'm going home tomorrow but decided not to go back to college until next week as i'm in quite a lot of pain where they did the keyholes to. 

A picture of what a Fundoplication is 

I'm back up at GOSH again in about 2 weeks for another lot of Antibody-Mediated Treatment, I will have this every month for a few months to hopefully say goodbye to these Antibodies! 

As always, thank you for reading

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Disneyland Paris!!!!

Hey!

i'm back from Disneyland! it was AMAZING, absolutely AMAZING! i loved every second of it, the journey there and back wasn't great but it was all worth it! when we got there it was quite warm, but on Thursday when we went into the parks it was freezing! i had a photo with minnie mouse and got hers, mickeys and queen of hearts signature, i didn't go on many rides because of my piccline and didn't want to risk it and plus it was too cold! i went on one ride and it was probably the scariest ride I've been on because i don't go on many rides haha! Olivia said she was going to watch so she saw us on the ride at the beginning and she saw my face and she couldn't stop laughing when i got off because my face was apparently very funny! :P i loved the parade, seeing all the characters was lovely and i got some photos too so i will post some :) i bought quite a lot of stuff and getting it into my suitcase when we left was hard work haha, we stayed in hotel cheyenne and it was a nice hotel! i went with college but i stayed with my friends the whole time, we had 2 rooms but there was a door in the middle so we could go in each others rooms, they made it the best holiday I've been on, there is never a dull moment when i'm with them, so many laughs! it started to snow when we were there too but not enough so it would set. I would love to go back to Disneyland one day and i will! but i have it off my bucket list, i am so happy i got to on this adventure with my friends with me and because of my donor <3 

I go up to GOSH Tuesday night for my Antibody-Mediated Rejection treatment and then should come home Thursday and then go back up for my fundoplication on the 19th Feb!  

As always, thank you for reading

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Transplant clinic 28/01/15

Hey!

I had transplant clinic at Great Ormand Street yesterday and it went okay, rather good actually little bad news but.. lung function has gone up a little bit to 68% which is good, around a week ago it was just about coming up from 50% and weight has gone up! I'm on 20mg of pred now but still eating anything I see so my cheeks are like hamster cheeks! when I was discharged from GOSH 2 weeks ago they did a blood test to test my antibodies and the results came back positive for Antibody-mediated rejection in my lungs, so I'm going back to GOSH on the 9th February to start treatment for it, i'm still allowed to go disneyland next Tuesday which i am soooo excited for!!! I am feeling much better then I was when I was in GOSH and my walking has got a lot better, I'm still getting out of breath a little bit walking like up stairs and hills but most people get out of breath doing them haha! 

I will talk to you all after disneyland because of course i'm going to do a blog post about it!!

As always, thank you for reading

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Goodbye 2014

Hello!!

2014 was the year i started to live a normal life again, despite going into hospital a few times because of lung problems, it was still a great year. 

• I did my GCSE exams which wasn't easy because i missed nearly 2 years of school
• I left school
• I went to my school prom which i never thought would happen
• I went to see ONE DIRECTION!
• I went to Butlins with my family
• I was 1 year post Double Lung Transplant thanks to my organ donor
• I had my 16th birthday and party- 2 years ago i didn't think i would be here for my 16th birthday
• I went to Hungary with my dad for a week! 
• I met some great friends thats I've always spoke to online (Faith, Jess, Emily & David, Charlotte, Victoria and Vanessa)
• I've made amazing friends from college that i can call my best friends 

These things might not be a great big deal for some people but for me it is amazing! i say this a lot but i only did all those things because an organ donor saved my life! their parents/carers said YES to organ donation. loosing someone you love is the hardest thing that could happen but knowing that they saved someone else's life is a great thing! i will always be happy with my life no matter what happens and will never ever forget my donor. 

sign up and do the right thing, organ donation saves lives: CLICK HERE!

Update: the methylpred seems to have worked its magic and now i am on 60mg of prednisolone for a week and gradually bringing it down(i'm still eating loads!) my lung function has gone up to 64% which means i am going home tomorrow! after 4 weeks of being in hospital i am actually allowed home! i will be coming back up to GOSH on the 28th January for a quick check up before i go to DISNEY!!!! and i have my fundoplication on the 19th February! i am sooooo happy!! :)

As always, thank you for reading

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A Dream Come True

Heya!

My dream has come true and i am going to DISNEYLAND in February, with college!! i am so excited! were leaving on wednesday 4th and we get Thursday all day in the disneyland park! and coming home friday! its only 1 day in the park but I've always wanted to go to disney and it will be amazing! :D I'm really happy i get to go with the friends I've made at college because we've all got so close and always have a laugh so it wouldn't be as good if i wasn't going with them! :) 

Just one downfall .. next week I'm going to Great Ormand Street for my Fundoplication, if you don't know what that is then here is a small explantation that i copied of the GOSH website :P… A Nissen's fundoplication is an operation used to treat gastro-oesophagael reflux. It uses the top of the stomach to strengthen the sphincter so it is less likely to allow food, drink of acid to travel back into the food pipe. I will be at GOSH for 5 nights and then will come home :)

One more thing, I normally organise a walk every year but last year we didnt do one BUT next year the Tarka walk is back! its in Barnstaple and the money will go to Live Life Give Life! if you would like to take part then please comment on my blog post or on Facebook(link below) we are hoping it will be bigger and better next year!

As always, thank you for reading,

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