hey everybody!!! I'm sorry i haven't been and wrote anything for a while but I've been quite busy with my new life!! its been great! I'm am so well! when i wrote last i had grown pseudomonas but we think that has gone now! I've finished the ivs and i finished the cmv medicine in IV and now i have it as oral! i don't have my picc line anymore! so I'm needle free! :D when i went to great ormand street on the 16th my lung function was 78% and my weight is 37.5kg!!! i have my 3 month post tx biopsy next month on the 13th and also im having my feeding tube out! :D I'm so happy that its finally coming out! I'm also having a 24 hour PH study test to see if i can come of some of my meds! :) i go back to school on the 4th november after half term, im pretty nervous haha! but im sure it will be fine. there is some bad news that i have too.. i have lost some of my hearing :( i had a hearing test and the answer is i need hearing aids so I'm having them fitted on the 31st of this month, i have lost it because some of the medications i was on has effected it, but I'm not on any medications now that can make it worse, i have lost the high and middle pitch, so i cant hear people saying S and T, i cant hear a high pitch alarm go of either so its pretty annoying! but i would rather loose my hearing than not be here because my life is great now! if i got really ill again like before(which i hope i don't) and i got offered another transplant i would defiantly take it, it has changed my life for the better so much! it was pretty scary yeah but in the end i got there! so anyone waiting for a transplant please keep fighting!! one day your chance will come and you will live your life like me! a couple of weeks ago i went for a meal with my friends for the first time since I've been better and i had so much fun! I've never laughed so much before in my life!! i did normal things teenagers do like take photos and laugh! last week i was looking at dogs online as i wanted a Chihuahua and i found the perfect little one!! so we rang up the lady and she said we could see her and when i saw her i fell in love with her straight away! so we bought her and now we have a little Chihuahua running around the house with missy! she is called Ruby! her and missy are always play fighting but ruby proper goes for missy!! she is not shy haha!
i go to great ormand street again on tuesday for a check up on wednesday and hopefully my lung function has gone up a little more!
oh yeah 2 saturdays ago we did a charity walk called the tarka walk for great ormand street hospital, caroline thorpe ward(children's ward at NDDH) and cystic fibrosis trust, it was 7 miles and i walked about half of it!! we don't know how much we raised yet but when we do i will let you know! these charities have been there for me all my life and i want to help them back! here are the links to the papers and news I've been on because of this walk..
thanks for reading and here are some pictures..
Me and my friend Hannah at my late birthday meal!