I was diagnosed with Cystic Fibrosis Related Diabetes (CFRD) in my mid-teens, shortly before my 14th birthday. I remember being in hospital and my schoolmates kindly doing a collection to buy a present, clubbing together to buy me Smash Hits 95. I clearly remember the double cassette (it was the mid 90s, I was years away from a CD player!) with hits of the era including: Dreamer by Livin Joy, Boom Boom Boom by the Outhere Bros, baby Baby by Corona and surprisingly at the bottom of the cassette as an afterthought, or filler Some might say by Oasis!
So with twenty-five years of diabetes, my control is pretty good all things considered, no doubt aided greatly by cutting sugar out of my diet and not really drinking alcohol (anymore!).
I must confess … the tight miniskirts you wear, I can’t help but stare (as R Kelly once sung – U got that vibe) – no, I must confess I am not a very good diabetic. But in regard to the number of times I check my blood sugar, and change my insulin needles, I am at the bottom of the class! I change my needle about as regularly as I change my cartridge (I know!), I have been known to swap needles between my two insulin pens if I have forgotten to take any needles with me and one has got bent. The only time I really think about new needles is when I’m packing to go on holiday and the new needles I’ve taken get unpacked again unused at the end of the trip! And, my hypo awareness is not always great…!
Freestyle libre flash glucose monitoring for CF patients (CFRD)
When my team mentioned that as a patient with CF Related diabetes, I was eligible for the Freestyle Libre Flash Testing, my ears suddenly pricked up – well, once they had told me what it is! They explained: By continuously wearing a sensor, you can very quickly and easily test and monitor your blood sugars. Minimise standard blood sugar finger-prick tests! Have a stack of data on your device (er, yes – way to make diabetes interesting – totally appealing to my geeky analytical side)!
From the Diabetes UK website : April 2019, the NHS will provide the technology for one in five of those with type 1 diabetes in England. Those who qualify include:
- People with type 1 diabetes who need intensive monitoring (more than 8 times every day) as demonstrated in a review over the past 3 months.
- People with type 1 diabetes associated with cystic fibrosis on insulin treatment
- Pregnant women with Type 1 Diabetes for 12 months in total
- People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability
- People with Type 1 diabetes for whom the specialist diabetes MDT determines have occupational or psychosocial circumstances that warrant a 6-month trial of Libre with appropriate support.
I mean, I have no problem with doing blood sugar tests, but they are just so bloody inconvenient and a bit of a faff to carry the paraphernalia around. I usually end up doing a sugar when I feel like I’m having a hypo or my level is super-high. How often do you test your sugars the nurse asks me? They are used to my reply – probably a few times a month. Que a ‘look’, followed by another similar ‘look’ when I respond that I change my needle a few times a month and my lancet whenever I get a new testing pen! (I am foul, I know!)
Freestyle Libre Flash Glucose Monitoring for CF patients
Anyway, the day comes where I am to be introduced to my new device. It is a simple circular sensor worn on the back of the upper arm, in the area known to many as the heart of the bingo wing! This is carefully washed over with a sterile wipe, which the diabetic doctor tells me earnestly, that two wipes are supplied per box to last a month. I laugh, which stalls his flow, he is obviously not used to such a response! I have so many boxes of these wipes dotted around the house, leftover from IVs. The blighters seem to pop up all over the house and multiple like an insect problem. Even employed to extra-curricular activities like squeezing my partner’s back pimples (nothing I love more – he is less so keen, sadly) does nothing to diminish the supply.
A device, a cross between a stapler and a date stamp pushes the sensor onto my wing (sorry, arm!) and this will stay in place for two weeks. Apparently, it will withstand all standard activities including bathing, exercise, swimming etc. It takes an hour to calibrate the sensor to the device and to sync up. Within 48 hours I have taken my blood sugar more often than I possibly have the previous six months. It is so quick and clever – simply hold the scanner on your phone or monitor to the sensor on your arm, wait a couple of seconds for the bleep and there it is – an instant result! Instant gratification! No faffing around sending test strips flying, dealing with overzealous bleeding fingers (yes, I’m talking about your effects heparin!) or dealing with the rubbish afterwards.
So far the sensor has stayed put in through showering, my dog jumping on me and my friend’s toddler tapping at it.
Freestyle Libre Monitoring Accuracy Issues
The only issue I have found so far is that I’m not sure how accurate it is – certainly when my sugars are on the lower end. My sensor at one point tells me my sugar level is 3.7, but I ignore it as I feel fine and take a nap. I know my sugar level is fine – if I try to nap when my sugars are low, I’m not going to get to sleep. After a 90 minute nap, my sensor tells me my sugar level is too low to show – looking this up online apparently it will not show levels under 2.2. I take a reading on my usual finger prick monitor and it is 3.7 which feels about right. I’m still finding my way with the libre sensor – there are so many benefits, I’m just hoping the accuracy improves as I use it more and store more data!