Last week I went back to NHNN in London for the 12-week update. It was a long day starting with fasting bloods at 8am, breakfast and then the usual physical check up. Then the wait began. Even though I took back my bottles of medication, as instructed, I was to get a new set of bottles and only then take the medication for that day. This meant the nurse instructing the pharmacy and then waiting for the pharmacy to produce it. Eventually the new bottles turned up and I took the daily dose at about 10:50. The catch then is that on the 12 week visit they take bloods 2, 4 and 6 hours after taking the medication... lots of waiting. I'd finished by 5pm.
The nurse (just Ming this time as Erla had taken some time off) explained that the pharmacy can only produce the medicine on the day required and not before, hence the wait. Ming explained that they are trying to change this process but I'm not holding my breath.
Apparently the week before, the pharmacy had some sort of problem and the patient only managed to leave at 7:30pm!
Otherwise everything else is fine. Somewhat surprisingly, my weight had increased 4kg (from 76kg to 80kg) from the last visit which is likely a result of odema (water retention). My lungs were still clear though so for now everything is OK and I don't need to take a diuretic. I think I am seeing marginal improvements in my symptoms but it is at the margin and could easily just be part of a natural variability. School started this week and I've definitely lost some fitness over the summer as the school run is exhausting.
There are 9 people on the trial in London, of which I am number 5. Dr Murphy said they had room for a few others but they are not far from capacity.
Remember to take a good book to read!