My last post ending in that I hoped my lung function wouldn't drop again, well it did and then GOSH wanted to see me, so we went up and we saw Paul this time and they didn't know what was wrong still
so he said the best thing to do was a Bronc and Biopsy the week after. I had the Biopsy and it came back with no rejection and no infection, they decided to carry on with my Antibody Rejection treatment because i still have bad Antibody rejection(they find this out through a blood test) A couple of days before, Great Ormand Street rang and said i needed to have a CT scan again to see how my lungs are.
When we got there I went for my CT scan and then Lung Function which is still not great. After, Helen came to talk to us and said she had looked at the CT and i have some pretty bad scarring on my lungs from my last rejection and that i will not get back to the way i was before, they only thing they can try and do now is make me stable, my antibodies are at 19,000. Next week i will go back to GOSH and have another treatment to try and get rid of them, which they will wash my blood out for 5 days, if that doesn't work then i will need radiotherapy, I am going to speak to someone about it maybe next week and if i do not need it(hopefully) we can just cancel it, it's better to talk about it now because it can take a while to organise. If the radiation doesn't work then theres nothing else we can try, a second transplant may not be the answer either because my antibodies are so high. But if we come to that we will deal with it as it comes. I will always be grateful to my donor for giving me these lungs because these past 20 months has been the best 20 months of my life and I hope to carry it on, I'm not going to give up!
Please everyone sign up to be an Organ donor, it saves so many lives, click.. *HERE* if you want to sign up :)
As always, thank you for reading