Friday, 14 February 2014

CGM - Yes and Yes!

Time for another update. It seems my blog is in a circle of updates at the moment but bear with me as this one contains exciting new news. Well exciting for me; maybe slightly less so for you!

In November I was having a quandary about whether to dive in to the world of CGM. Would I and Should I? Whilst I desired CCG funding and not having to pay for it it became clear that if I wanted one I would have to use my money to do it. As I said at the time I understood why this was the case and begrudgingly accepted the short-term cost reasoning. 

In between then and now I had an appointment with my consultant and as a preparation for this I managed to persuade my wonderful DSN to let me borrow one. This was also paired with a few nighttime issues so it had a clinical need too. My control with the CGM was as tight as I've ever seen it. I'll come to theories on the reasoning for this in a moment. As a comparison my estimated HbA1c with the CGM on was 5.7%. This compares to the bloods taken at my appointment which showed 6.8%* for the previous few months. I understand (and have written) about how poor a measure the HbA1c test is but it does indicate the reduced number of highs and as it's the only measure available it's the one figure that can be used to compare.

*As a sidenote the 6.8% was the first I've ever had that began with a 6 so I was very excited by this!

So I was lower; but why? As the sensor was a one-off had I altered my behaviour to keep the lines in the lower parts of the graph? This has been a constant question in the back of my head. If I had a CGM for a longer period would my food behaviour return to a more 'normal' level and therefore provide a more accurate view of my BG levels? I think there would be that constant nagging in the background and the ability to tweak ratios and basals after seeing a long-running trend is, for me, highly valuable. Was my behaviour also affected by knowing that Barney or Mr Rockwell were coming up and I was keen to be a 'good boy' when sat in front of them? Again this is a possibility but I need to understand how I'll behave if I know that the only person seeing my graphs is me. I do think that my obsession with numbers will help me to maintain a lower average than I've been experiencing with blood testing alone. Could this be something I find out over time?

So did any of this help me to get closer to an answer as to whether buying a CGM and sensors would be good for me? In short, yes. The deciding factor for me were the graphs seen during my pre-appointment sensor. Compared to my scatter gun of dots on the same graph from BGs in the weeks before that the difference was significant. 

There are also the benefits of my BG (15 minutes ago) being viewable at a quick glance. I'm involved with a junior football team and last week I had an annoying hypo that resulted in me asking the boys to change coloured bibs three times in five minutes and an exercise that was a little bit unorganised. To be fair to the boys once I twigged what was happening and just told them to play a match whilst I chomped on Fruit Pastilles they didn't really notice. But I did and I felt strongly that I let the boys down. Being able to spot that trend earlier would be very helpful for me. Paired with a strong desire to get back out on the road doing long-distance running with a strong fear of hypos on the run. CGM wouldn't stop the low but it would help me build a strategy much easier than by testing frequently whilst speeding (OK, staggering) along.

However, there's still a significant issue of cost. Even with the free transmitter offer from Medtronic the £55 per week is still a huge chunk of money in anyone's wallet. I had long repetitive conversations with the wonderfully supportive Mrs Tangerine on this point and it came down to this. Do I think the sensor will improve my control? Yes. Will this consequently reduce the likelihood and impact of complications in the longrun? Yes. If it was my son or daughter with the diabetes would I hesitate for a second? No. Can we afford or justify the cost full-time? No. Part-time? Just about. In her words "Just get it bloody ordered. You know you want it and it will be good for you and therefore good for all of us."

The plan is to order the first five and use one or two a month to try and build up some meaningful data. The deadline for the fourth box free offer is 31st October so that should fit in quite well with my planned usage.

A few calls and emails to Medtronic and my DSN and the order is in. I'm hoping for the new improved Enlite sensor but that is still under discussion with them.

So that's where I am now. Once I've had it running for a while I'll update on whether it's worth the considerable cost.
Thanks for reading.

** I'm very aware that CGM is not viewed by all as a useful tool and some believe they can achieve similar if not better control through MDI + blood testing or pump + blood testing. That is fine. Really. This world we live in is filled with different people and what works for me, both in my head and my body, is the most important factor for me. What works for you is the most important thing for you. I'm not wrong, you're not wrong. We're just different. In a good way!

*** Slight addendum required after a callback from Medtronic today. Although the new improved Enlite Sensor was released on Monday I received the older version on Monday. Because it had left Medtronic's possession they are not allowing them to be returned to be swapped even though the seals on the box are unbroken. Obviously I am a bit disappointed by this but will hopefully get chance to review the new version when I buy the second box. Hey ho.

Dave 

Sunday, 9 February 2014

Long Live Mr Rockwell

Time for a follow up to my blog post from August about a fictitious appointment for Fred when he was seen by Barney at the local hospital. The end of this was that Barney would be contacted within six weeks by his Diabetes Specialist Nurse and then would return to see Barney six weeks later to judge success from the fantastic and considered tweaks proposed.

Continuing my attempts at fiction I’ve decided to develop the story five months on (Booker Prize here I come!) .…. 

Life goes quiet for Fred in the meantime but then he receives a letter advising that he has an appointment at the hospital again. This excites Fred as he really wants to share the work he’s done over the last few months to try and improve his overall control. However, paired with this he’s been experiencing persistent lows in the evening which drop further into the morning. He knows that a CGM loan from his DSN will help to try and identify the cause and also help to convince him about their use in the long-term. Like myself he has a belief that they would assist his overall control. Thankfully Fred’s DSN agreed with his request and one was fit for the week before his appointment at the hospital. It was really useful to Fred as it showed some areas to work on and also highlighted a few good points about his control too.

Before the appointment it’s expected for Fred to get a full set of bloods done but after the appointment in the summer he was nervous about this as he wanted to talk about a few things. Also his annual Christmas virus meant that for two of the previous four weeks he ran unusually high and he was convinced a higher than fair HbA1c would reflect incorrectly on his overall control. Because of these factors he took the slightly naughty step of avoiding the bloods being taken before the appointment but would be happy to have them taken that day for consideration afterwards.

After speaking to his DSN beforehand on how to ensure he avoided Barney again. Tactics were given and upon arrival Fred expressed a desire to three different professions that he wanted to see Mr. Rockhead today; not Barney. Something along the way worked (I think it was DSN 1 and 2 combined that fixed it) and Fred took his numbers and questions in to see Mr. Rockhead. A good discussion was had by all and the consultation was a conversation and discussion in contrast to last time’s lecture.

The results were that some tweaks were agreed and Fred was happy with the outcome. Fred was convinced that his thoughts had been considered and because of this he bought into the suggestions offered. It was a win-win. Without this buy-in then walking away from the appointment Fred would know what he’d been told and he may have made the relevant changes to his insulin but within days or weeks the willingness to push for improvements just disappears. Following Fred’s appointment with Mr. Rockhead he’s convinced the changes are a good thing and is still doing those things.

I hope you liked today’s tale and I also hope you don’t experience a Barney but meet with a Mr. Rockhead every time.

That’s all for now though please come back very soon for an update on my previous post about my thoughts on CGM.

Dave