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Answers to your questions and a little update! :)

Tuesday, 17 September 2013

Hello, this blog is about answering some of your questions, I put a Facebook status up and twitter update to see if you have any and you did! so here is my answers..

1) now the you have had a transplant do they still consider you to have cf?
Yes I do still have cystic fibrosis as it is genetic, I inherited 2 genes from my parents that caused my cf, and unless there is a cure or gene therapy I will have always have cf and always be affected by it. 

2) does it feel strange not to have to do your chest PT and treatments?
I still have to do my physio for the time being as after surgery there will be quite a lot of mucus of the lungs so I have to get it up and because I have this bug called pseudomonas I need to get it all up.

3) after your operation and the time you had any for of artificial ventilation removed how did it feel to take a breathe on your own for the first time, did it feel strange or different?
To be honest it didn't feel any different at first as I was still on high flow oxygen, but in my head I was thinking wow I can actually breathe!

4) will cf try and effect your new lungs?
my body will try and reject the lungs that's why I'm on anti rejection tablets, and if you catch a bug like pseudomonas and it stays for too long then the lungs will eventually get damaged and be like they were before the transplant.

5) what 3 things will you look forward to doing with your new lungs which you couldn't have done before?
Well walking my dog is the first one! 
Going on holiday and being able to enjoy it 
Being a normal teenager!

6) how do you feel before and after your transplant?
Before my transplant I felt absolutely rubbish! every breath was a struggle, I couldn't do anything atall, not even laugh! but now I can do everything, I feel great now and I can laugh properly! I can walk more, I don't feel rubbish anymore, I feel what I believe is normal, like everyone else feels! :)

7 your greatest wish came true when you got your new lungs, what do you wish for now?
well all i wish for is to live a long healthy life really! and i wish to go to paris of course haha! ;) and to make lots of awareness for cystic fibrosis and organ donation!

thank you for all the questions, and now for a little update,
last week i went to great ormand street last week for a biopsy on wednesday and unfortunately i have grown abit of pseudomonas in the joint from my throat to my lungs, i have been started on IV antibiotics for 2 weeks and im carrying on with the cmv medicine until the 21st, but helen spencer said everything else looks good! My lung function has gone up to 64%!! and my chest x-ray looked okay:)

oh yeah you know i said i was going to the awards thing! ive only gone and won it!! i won child of courage! i have a trophy and im going to be in my local paper, i cant believe i won because the other 2 stories were so inspirational!

I've been really well apart from this pseudomonas bug so that's good! Ive started to see some of my friends now! I'm going to great ormand street again today for a check up tomorrow to do lung function and a x-ray again and to see the transplant team! 

Here are some pictures of the award and things.. 

Me all dressed up for the awards!

the car me and mum went in!

My award and the paper artical!


Sunday, 8 September 2013

Hello everyone! since my last update I've just been recovering really! It will take me a couple of months to fully recover, now that I have diabetes I have to have insulin when I have lunch and tea which is going ok! i did my first lung function and that was 50%!! which is good for the first go! I started doing all my meds and stuff :) on the 29th they said we could start thinking about going home the week after! Paul aurora came back as we didn't see him for 2 weeks and there was alot of changes made! All the iv antibiotics was stopped and made to oral, I had to start nebulised colymycin, but because i have this bug called CMV I had to stay on this iv medicine for another 3 weeks so that set us back on going home at first and we thought I would of had to go back to my local hospital for 3 weeks! But thankfully they said BUPA could deliver it to us at home! :) so on Wednesday we went to the Italian wing to stay for the night, well actually for 2 hours sleep! because I had a few blood tests before we went to the Italian wing and when we got there the bloods came back and my potassium level were quite high so at 1:45am they rang us and said to go back to the hospital for more blood tests and we ended up staying there for the night, and the next day I was allowed home!!! It felt good to be going home!! I got home and there was balloons and banners up and my dog had a balloon on her collar, all my family was at my new house waiting for us to get home! we had a nice tea, the past couple of days has been really good, just being at home is great! I've seen a few people! today I went out for roast with my mum and her friend Debii for Debii's birthday! :) on Tuesday I go back up to great ormand street for a biopsy on Wednesday and hopefully come home that day but if not i will come home Thursday, I will be at gosh quite a lot now, taking it every week at a time! and I have a few tests to do like lung function, x ray and I will see the diabetes team :) 

Oh yeah.. My sister nominated me for an award for child of courage and next Friday I go to a party thing and go up on stage and get a certificate or maybe a trophy! And have a 3 course meal! I'm in the top 3 to win! So that's pretty cool! :) 

That's it for now really! Thanks for reading! xxx 

My welcome home cake!

The tickets to get In the meal!
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