so I came to GOSH for clinic last Wednesday and did the usual tests, e.g. lung function, bloods and x-ray, my lung function was okay, but at GOSH they have a new machine to test your lung function and its more accurate and my lung function is actually only 75% not 90% it hasn't gone down its just a more accurate machine! when we saw Helen Spencer, I told her I was getting out of breath walking, was always tired, and was bringing up yellow mucus every now and then, so she seemed concerned and said I needed IV antibiotics and admitted me into GOSH, Helen was worried that I would have rejection in my new lungs, whilst I have been at GOSH I have had an ultrasound on my stomach because I was having pain near my feeding tube, and after the ultrasound the doctors said that the balloon that is attached to the feeding tube was no longer attached BUT another doctor came to see me and said I don't even have a balloon on my feeding tube! I've also had a ECHO and an ECG to check that my heart wasn't the reason why I'm feeling breathless. This morning I had a platelet infusion because I have a really low platelet level and I went down to theatre to have a bronc & biopsy, a picc line put in and I also.. HAD MY FEEDING TUBE REMOVED! I have been waiting for this for a long time and today it finally happened! I had the tube for about 3 years and I hardly ever used it! when I came around from the surgery I was little rough, and my oxygen levels drop every time I'm taken of the oxygen so I have been on it since, I went down for an x-ray to check that I didn't have a pneumothorax but I don't, the doctors think because I have low platelets and I bled a lot whilst I was having my bronc and they think I still have blood on my lungs that's why I need oxygen, so I might need another platelet infusion, I wont get the bronc and biopsy results until maybe Monday, but I do know that my lungs are inflamed, Helen also said that she can't say it is rejection and she cant say it isn't!
my prom is next Friday and I'm really hoping I can go because prom will only happen once! and my mum and dad have bought my dress and everything :(
sorry this has been a long post and you have a lot to read but a lot has happened in the past week, and thank you so much everyone for the messages and get well soon comments!