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The Decider - CF Clinic Review

Some of you may know I have been waiting for this day for a while. Being out of the country & not seeing my CF team for 6 months is always slightly concerning. I cannot have frequent tests & updates on my health as much as I would normally.

I have been planning to be away for Christmas & New Year (somewhere warm and dry as it benefits my overall health), so I was expecting to be told I'd need to go into hospital for a course of IVs before jetting off again. I had only been home 10 days & I have already felt a little tight chested which wasn't the best feelings to have before the review. This review has been in the back of my mind as 'the decider' - whether I will be well enough to leave the UK again without needing extra treatment, or, if I would have to take 2 weeks out before leaving to have some serious medication.

So yesterday, I woke up feeling positive & my chest felt good. Spent the morning at a Pilates class, did some yoga breathing techniques & morning medication routine before heading up to London. The appointment consisted of seeing my dietitian, physio, CF nurse & CF consultant.

So, let's get down to the nitty gritty...

I saw my CF physio first where we spoke about all my exercise, what physio therapy I am currently doing, & how I can increase the amount of airways drainage clearance (AD) I am doing. I mentioned I have been a little tight chested since being at home, so she suggested just increasing the amount of AD, & doing it when I am in the shower. I did my lung function test which was FEV1 2.78 which equated to 85%! I was SUPER relived by this as it meant my lung function had not dropped over summer, & had stayed stable.

I then saw my dietitian where we spoke about my vitamin levels, blood sugars & I mentioned I was experiencing bloating after most meals. This is something we will keep an eye on & review in the new year.

We continue to montior my CF related diabetes (CFRD), so blood was taken for the HB1C test to review my past blood glucose levels. Annually I also get fitted with a CGMS (Continuous Glucose Monitor) which has a super thin sensor, the width of a single hair, inserted into my skin on my stomach. It continuously tracks my blood sugar levels so we can make sure my levels are not going too high, or dipping too low. I am currently on a stabilising tablet called Sitagliptin which is helping with the diabetes at the moment.

So, to gather this information, I had the CGMS fitted to monitor for the next 4 days, while doing a food diary and finger prick readings alongside to see if what I am eating affects my levels.

Lastly, I saw my CF consultant. She was very happy with all my results, my weight, lung function, the amount of exercise I am doing, & being able to keep it up, & how I am maintaining my health when away. She said there will be NO need for me to go into hospital for IVs as all my stats are fantastic. We agreed, I wouldn't want to get ill from the strong medications just so I could have a small boost before leaving.

We plan on having another small review & catch up before I leave for Australia. I will get a new prescription for some emergency antibiotics to take away & we spoke about me potentially trying a new piece of physio equipment called an Aerobika. This is something we will organise with a home visit.

So, overall I was thoroughly pleased with my review. It has allowed me to plan my next step & book our travels for Christmas. I am so happy I have been able to keep up my weight, lung function & overall fitness while in Greece too.

Couldn't have gone better!

Cannot wait now to build the Salty Fitness page more & share all the travels I have, not letting CF stop me.

Mum always joins me in my appointments


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