Having had the Libre for a whole year now, being able to successfully visualise my glucose level movements and properly understand the actions of insulin, food and exercise, I had embarked on a dynamic management model. My efforts to move to a low cost pseudo-Dexcom model have so far failed due to issues hacking the Transmitter, so I continue with Flash Glucose Monitoring.
In the meantime, I have taken 3x-4x as many injections thanks to being able to observe much more closely what my glucose levels were doing (in spite of the dodgy sensors, and there have been a few), and invested in injection ports to help manage this.
I’ve also encountered the joys of eating relatively high protein with low carb and the resultant Gluconeogenesis effects, plus the injecting additional shots that goes alongside that.
Frankly, I go fed up of the number of times I had been injecting, and as a result had been looking for a pump. My diabetes care team have been not especially helpful in that respect. They have NICE guidelines and CCG costs to deal with and with the testament to my “normal Hba1C”, as quoted by the registrar I saw, I’m not a prime candidate. The amount of time taken to get hold of one is also an interesting question. It will first have been raised about a year ago that I should be a pump candidate, but thanks to unhelpful comments from clinic consultants, the whole process is rather drawn out.
Fortunately, a couple of friends stepped in to help. Due to the “rules” there is an implicit “black market” in pumps in the UK, where it is possible to pick up those that are no longer used and self fund the consumables. Consumables are available from outside the UK due to different rules being applied. Neither Input (who believe that everyone should have a new pump) nor the NHS (who don’t want the risk of a pump going wrong and being passed on) like this approach.
Fortunately, as a tech savvy person who knows how to carb count and has spent a lot of time looking at how dosing works thanks to lifestyle, exercise and eating, I can see that the use of a pump is really just another insulin delivery system.
I went away and read Pumping Insulin, the Insulin Pumper’s Bible, and was able to arrange to get hold of one of these:
Yes, that’s an Accuchek Spirit Combo pump and Handset. Having taken great care to make sure I’d calculated what i thought my basals should be and understanding Insulin Sensitivity, Correction factors, variations at different times of the day, I embarked on my new Diabetic endeavour. No more Long Acting. Everything Novorapid from here on in.
I met up with people who explained a few items relating to the pump and pointed out a number of idiosyncrasies that I should be aware of. They gave me a some supplies to get started with and off I went. I programmed in all my calculated values and headed off after an hour to get on with my life. none of this taking time off. I knew I was going to have a late night as I was heading to a friend’s 50th birthday, so with my trusty Libre and my new pump, I embarked on my new adventure.
It quickly became apparent that the values based on the calculations in Pumping Insulin were really far out. It recommended around a 90% of calculated basal, to avoid Hypos. So wrong. I ended up Hypoing constantly for a few hours and had to drop the numbers to about 75% of the former basal. This seemed to work quite well. Having gone to the gym that evening as well, I clearly had to set up with this in plan. Within about 12 hours I was on an even keel and everything was working nicely.
The Libre made a huge difference in this process as I was able to observe exactly what was going on. As a result, I make my first recommendation, which is that for the first two weeks before and with a pump, the NHS should supply a CGM or FGM. It must be a nightmare trying to manage this process relying solely on finger-pricking. It really doesn’t take a week off work to get this sorted. If you go into it understanding what is happening, using a pump should be very straightforward, and in my experience, is.
As a user of a pump with refillable reservoirs, a standard Luer lock and therefore the flexibility to use just about any tube and cannula set, I can’t for the life of me see why anyone would offer up proprietary systems aside from profit. It makes self funding of consumables very much easier.
My second recommendation is that those who have previously pumped should be asked by the local NHS pump clinic to help with the uptake of pumps amongst newbies. The NHS has a way of making it seem complex, scary and almost a dark art. It isn’t. If you think of it as just another insulin delivery device, then it’s nowhere near as scary or difficult to deal with. It should be a very straightforward process.
Coming back to the choice of pumping. Fundamentally, and this is the way it should be, this has been a massive non-event. I have found it dead easy to move on to the pump. It has made dynamic management much easier. Having a remote makes it much more discrete (not that this bothers me, and I wear the pump on my waist band and show it off – makes some interesting conversations!) and very easy to use. My first 30 days are showing an Hba1C estimate of 40 mmol/mol. No change there then (although there is a birthday in the middle there with all sorts of rather naughty foods).
However, prior to my birthday, my estimated Hba1C was showing as 36 mmol/mol, and more importantly, my standard deviation was showing as 30% of my average glucose levels. That’s the kind of variance that can only be a good thing.
So what are the key take-aways that I have? Really its the ability to bolus in different and more effective ways. The multi-wave bolus has become my biggest friend as it smooths the tails on food which contains a lot of protein. The super-bolus flattens large carbs. It all provides a lot more flexibility and ease of dynamic management. And of course, far fewer skin entries, hopefully prolonging my injection sites and giving my body a chance to recover.
There are one or two items that are slightly annoying though, and I’ll go into those on my “Perfect pump” post, which will be forthcoming.
My conclusion though? Pumping is better than MDI and I would recommend it to anyone, even with self funding. I’d recommend it even more if it was possible to combine it all with CGM. That would be an ideal solution.