China was amazing! We visited Beijing and Shanghai, hiked on the great wall on christmas day, visited the terracotta warriors in Xian, hiked on a high mountain with dangerous paths and sheer cliffs, saw pandas in Chengdu, enjoyed 26 hour train journeys with the geckos tour group, partied in Yangshuo for new years eve, rode a bike on crazy streets in Yangshou, hiked on a high mountain through rice fields and ended the trip in Hong Kong and Macau! It was an action packed 4 weeks that was over too soon! I’m already back at uni now and dreaming about future holidays already!
As you can probably tell from the title, not everything went to plan in China. The first two weeks went well. We had two days in Brunei and it was nice to be able to not lose all my salt in a hot & humid place. I had no salt on my skin even though it was about 90% humidity and over 30 degrees. After this the next 2 weeks in China went well, I coped well with the smog, the cold temperatures and the busy days.
According to my pico1 my lung function was about 69-72% before I left. I did my PFTs about once a week whilst away and during the first two weeks I was at 70%. I then had a bad week, we slept overnight in a room that was below zero (the water bottles froze) on the tour and I used a lot of energy keeping warm over these cold days (-15 degrees celsius). There was also a lot of smoke in the restaurants and public areas, plus the smog. I did not sleep fantastically on the overnight trains, and some of the days were quite busy, so I was getting more tired. I also found it hard to have fatty food with the tablet every 12 hours, there was no cheese over there (my normal night time snack with Kalydeco) so I had the tablet with breakfast and dinner. This meant it was a little less than 12 hours and sometimes the meals were not particularly high in fat. I also did not have a nebuliser with me, but I kept up with all my tablets, ventolin and bronchitol.
This meant my CF cough returned for the first time since September (please stop reading now if you do not want to read about sputum colour!). I started coughing up thick green mucus in moderate amounts (but only about 30% of what I used to cough up). I did not feel great, I was quite tired, I was getting more puffed out and also had a blocked nose (also green, first time since September). My FEV1 dropped to 64%. I tried to get more rest to get on top of this but after 3 days I gave in and started cipro. This helped to stop me getting worse but over the next 10 days I still continued to feel like I was not 100%. On one of the days I remember thinking if I was back in Adelaide I almost felt like I was sick enough for IV antibiotics.
I was surprised that my FEV1 only dropped to 64%. Previously when I have felt like that I have dropped much lower, down to the 40s. By the end of the holiday I was a little higher at 65%. Within 3 days of being home, with rest, no smoke/pollution, high fat meals with kalydeco, and pulmozyme nebs I was back at 69%. My cough improved very quickly, I am back to coughing up small amounts that are light green/yellow. I will hopefully continue to improve slightly over the next few days to get back to where I was before China.
I have official PFTs later this week. It is hard to tell exactly how well bronchitol worked for me given that I was in China, so I am not sure whether I prefer pulmozyme or bronchitol at this stage. I need to improve 10% from the start of my one month trial to be able to stay on both bronchitol and pulmozyme (the PBS in Australia only lets you have one of these medications, however there is a program through Pharmaxis where some people can access both if they improve 10% with bronchitol).
Overall it was much easier travelling without a nebuliser and pulmozyme in a fridge, it definitely would not have stayed cold and it actually probably would have frozen in some parts! Kalydeco and Bronchitol made it much easier to travel and also helped my FEV1 stay pretty high despite 2 weeks of feeling unwell! I am now very hopeful that I will be able to recover quickly from colds this year, just with oral and inhaled antibiotics. I am hoping that I will spend very little time in hospital, which will be a nice change from my previous 6-8 weeks of hospital IVs per year. It seems weird to me not to be planning IVs around uni, work and holidays, definitely a nice to change to have more free time and one less (major) thing to schedule in to the calendar. I have a very busy year ahead with uni, so I am looking forward to keeping healthy with Kalydeco 🙂