Saturday, 22 May 2010

Looking back at the CGM Journey

When i embarked on my pump journey four months ago I was nervous, excited, openly impatient and if I'm honest, sceptical. I was pretty sure, after years of evidence to suggest I was right - that the pump wouldn't make any difference. I'd tried everything I could think of to manage this condition better than the poor attempt I had so far managed. I had tried exercise, diets, insulin regimes varying from two a day to five or six a day, I'd tried different types of insulin, I'd even thought about accupuntuce and massage to improve the condition - nothing had worked. The perfect mixture I needed was totally absent - leaving with with sugars in the 20s more often than I care to recall. So even though I had spent hours doing research about the pump and even though the blogs, articles and websites I'd read sang the praises of pumps, I just wasn't convinced. Why would I be? Experience had taught me that diabetes was NOT managable, contrary to the claims of so many others out there.

So when I started waking up with sugars of 4-6mmol and started staying there almost all morning, I was thrilled. Writing each post about the newfound hope I had discovered was like a breath of fresh air. I used to spend my days frightened and angry, for the first time in my life, I felt excited and proud of the fact I felt more in control.

CGM was something I had been interested in long before I started on the pump. The thought that you could monitor your sugars constantly and that this information would feed straight through to the pump was to me, the closest thing to a cure you could find. I spent a lot of time reading blogs from our diabetic friends in the US because there, as long as you have insurance you can apply for CGM at no extra cost. In the UK, it comes with a price tag and a heavy one at that! For the Dexcom 7+ system, it costs around £1500 for the starter kit, receiver and a handful of sensors to get you going. The sensors are then around the £250 mark for 4 sensors. For the Medtronic which I was able to trial, it costs around £450 for the full strater kit along with ten sensors, provided you buy the CGM at the same time the pump is purchased. If you buy it at a later date, it costs £750 with ten sensors. A box of 4 sensors is then £160 and this will last one month.

One of the clinchers for me, was whether or not the sensors could be worn for longer than the 6 days Medtronic state it can be worn for. I had read online about people getting two weeks out of them. This would in effect lower the cost of the sensors to £20 per week. Now £80 a month is still a lot, but worth it don't you think?

Well, after a two week free trial, I remain completely torn about the potentially invaluable information at my fingertips. From the outset, you are told that you should use it for the purpose of seeing 'the trend' your sugars are displaying, rather than the specific number. OK, that's great and all, but if the CGM tells me I am stable at 6, when I am actually stable at 13, the implications of that for a diabetic are huge and frankly, it's about as useful as a snow jacket in summer. I am being a little dramatic here, as generally the CGM did agree with the BG reading, but there were times when it was 3 or 4 mmol out, which is enough to leave you concerned.

I also found that contrary to people claiming to wear their sensor for 2 weeks, I never made it past 7 days. The first sensor died after just 7 days. I tried time and time again to convince my pump that it was a new sensor, but after about 6 hours of trying to convince it so, it gave up the ghost all together. The second sensor made it to 8 days, but this is still a far cry from the 14 days people claim. I guess the fact is it states six days on the tin, so that's what it does. Seems fair!

That being said, there were benefits - and huge ones at that. I was able to see what was going on overnight, which was a huge bugbear for me as I used to wake up during the night to test, but that the snap shot you see tells you nothing. I could be 12 when I go to bed, 8 during the night and 9 in the morning. But what was the trend overnight? How can I possibly know without waking myself up 3 or 4 times. During the night I would find it most useful, as it was when I was most stable and my blood sugar would match the sensor sugar almost down to 0.1 of a mmol. Great! This is where CGM becomes really invaluable, and had I had longer to get used to using it, inserting it and figuring out where is most comfortable and how to interpret the results most effectively, I would have no doubt that I would be sold.

I guess for me the biggest issue for this system is that it comes down to cost. I would be happy to wear the sensor (sore skin or no sore skin) if I wasn't having to shell out £40 per week for it. When I did wear the sensor for just 6 days, it left almost no marks (just as the cannulas do) and it did supply me with some extremely valuable information. But unfotunately I am not made of money, and as invaluable as it is, I just cannot justify wearing it at the moment. If it were cheaper, I would be at the front of the line!

I would recommend anyone have a go with a trial. It may be that you instantly expereince it as useful and valuable for you. it may be that it suits you down to a tee. It is always worth a shot and I saw enough positives to convince me it would be worth it.

It may come down to the fact that perhaps I calibrated when I was going up or down too quickly. Medtronic are the first to state that this can skew future results, and are always at hand to offer advice and guidance. Having only used 2 sensors, it is likely that I have yet to learn the best time to calibrate it. It took me weeks to work out which sites were most comfortable to wear the cannulas and it has taken me 24 years to learn where is less painful to do blood tests.

My advice? It is useful, offers knowledge you could not previously have known, and for those with the finances it will benefit your life, but anyone who cannot afford it, will just have to wait in line for the NHS to catch up with what the rest of us know.


  1. fan flippin tastic... great read!! i will def share this with a few people... i was looking at this myself... but dont really see the point now... thanks so much.... keep in touch... lee xx

  2. Very good article. my son was fitted with one for a trial and the doctor told me the results were 'useless'!!!!!!!!!!!!!! He didn't even give them to me!!

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