I went to Papworth on Friday as my lung function was down by a little under 10%. Enough for me to worry. They did a barrage of tests - X-ray, nasal vacuum tube thing (most unpleasant) to look for viruses, I tried to produce a sputum sample, some blood tests. They found a doc and he provisionally booked me in for a FOB on Thurs next week in case of rejection.
We went off to Norfolk to visit my mum and yesterday the blows had dropped again and today more so - they are 20% down now, and it is starting to hit my FVC as well as FEV1. Temp is fine, don't feel ill, still have 98/99% O2 at rest and pulse this morning was 58!
I rang the transplant doctor on call at Papworth and he's going to ring me back once he's spoken to the on-call consultant. He said it sounds like we need to start things sooner rather than later. Sounds like he thinks it is rejection.
Other possibilities: Upper airway infection - either viral or bacterial. Strange reaction to Azithromycin - I'm on this antibiotic to treat the re-emergence of campylorbacter and I'm just thinking that last time I had a dip in lung function and was almost FOB'd it may have coincided with the course of Azith following the original campylorbacter bout. Just my pet theory.
We will only know after they FOB me and at current pace of decline I'd rather that was soon!
8 months ago