When we arrived, Jackie came and did my obs and lung function. The lung function was at 61% which we were really happy with although it could be a lot better. But I was expecting it to be lower. From looking at my December blog post I noticed the lung function was at 58% after the ivs anyway so it wasn't much of an improvement, but at least it hadn't dropped. Most CFers read their lung function in litres, but I've been so used to reading the percentage when I was younger that I understand that rather than litres so sorry if you're confused what I mean when I say percentage instead. Me and mum have been really good with keeping on top of the physiotherapy and doing it nearly every day, which is a big difference to the arguments and nagging which resulted in us not doing physio at all before.
After I saw Jackie, the dietitian came in and spoke to me about my eating and weight etc. We have a new lady that has just started and she's lovely. I'm so rubbish with remembering names though so when I do remember her name I'll talk about her using her name next time rather than 'the dietitian' haha. She was really happy with my weight as I had managed to put on 1 kilo since my last appointment so was still maintaining that 50kg mark! We spoke about my daily eating regime which she was impressed with and said it was the ideal diet for a CFer, so that's something to be proud of. Eating loads of crisps and chocolate and being told what you're doing is ideal. Mum said 'that's my ideal diet as well' haha as if. I bet many people wish that was theirs. I hadn't been taking my Fortisip supplement shakes as they're not particularly enjoyable if I do say so myself. But the dietitian wasn't annoyed as I still managed to gain weight, so she said it would make her happier if I managed to fit in one more of my Nesquik milkshakes a day as I much prefer these than the Fortisip and that I try to drink more flavoured drinks during the day. I told her this was hard as at work we are only allowed water due to being around the children, but work are always really helpful so I'm sure they wont mind.
Dr.Higton came and saw me shortly after. She was happy that me and mum had been doing the physio and was pleased that the lung function hadn't dropped! Finally, an appointment where I'm not put on any ivs or more tablets. Instead, I've just got to come back for another check up in March.
Lately, I keep having more problems with my upper back than usual. I used to get this because of my Scoliosis, but since they've signed me off it seems to have got worse. I spoke to Dr.Higton and said to her I get this mainly when I've been sat on the floor with the children at work. She said it's probably nothing to do with the Scoliosis and is because I haven't been sat with a straight posture for a lot of the time so Jo would come and see me to show me some stretches and if they didn't help then Dr.Higton would look into it further. Jo, the physiotherapist, came and showed me some stretches to do on a low back chair that should hopefully help my back. So we shall see how I get on with those this week. Fingers crossed they work.
At the end of my appointment Judith came and flushed my port. This is just a quick flush with saline every 4-6 weeks to stop the port line from blocking.
The appointment went well and I'm happy. I just need to keep up with the physio and nebs now to try and shift this cough and improve the lung function further!
This month the Cystic Fibrosis Trust is 50 years old. They've achieved so much in the first 50 years but have not yet completely beaten Cystic Fibrosis. So instead of celebrating the first 50 years, they are working harder to help reach the day of beating Cystic Fibrosis so that we can receive treatments to transform our daily experience allowing us to live a long satisfying life. So when everyone with Cystic Fibrosis can celebrate their 50th Birthday is when the trust will celebrate. They have set up an event called 'No Party' where people can blow up their no party balloon to show their support in beating Cystic Fibrosis.
Please help support the trust by blowing up your No Party balloon at
cysticfibrosis.org.uk/no-party
Have a good afternoon :)