The "I can..." of insulin pumps - Diabetes Week 2014

The theme of this year's Diabetes Week is 'I can...'. Here's a guest post I was invited to write for the Diabetes UK blog.

When I was thinking about this year's theme of 'I can' I was reminded of a conversation I had with someone last week about insulin pumps. It was something that they were being encouraged to consider, but like pretty much everyone else (myself included) their initial reaction was uncertainty. Uncertainty over being connected to something 24 hours a day. Uncertainty about relying on a fragile piece of technology to keep them alive. Uncertainty about how it would make them feel and how others might view them. Uncertainty over whether it would actually improve anything at all. In short, they didn't really think it was for them.

I know those feelings well. I had them all, and many more besides. I was 'pump averse' for many years. My clinic suggested that it might help with my recurrent hypoglycaemia, but could never really articulate how that might happen. All I could see was a big bunch of (what I thought were) downsides.

In the end, for me, it was reading the experiences of pump users online that convinced me to give it a go. The day to day nitty gritty of how it helped them. Now I'm not saying that insulin pumps are for everyone. Some people wouldn't want to touch one with a barge pole, others do just fine on Multiple Daily Injections and are completely happy as they are. But if it is something you are considering, here are a few 'I can's that an insulin pump has given me to add to your thinking:

If I want to go to bed at 5.0mmol/L, I can.
Ahhhhh basal! I have been through quite a few basal insulins in my 25 years of pancreas-impersonation. In the old days we were always advised to have a snack before bed. Why? Well because in all likelihood your basal-du-jour was going to be a bit over-enthusiastic in the early hours and could well plunge you into an overnight hypo. It was many years before I discovered 'basal testing' (systematically adjusting your basal insulin by fasting tests so that it just holds you steady) but try as I might, even with fancy schmancy analogues I could only ever get my basal 'near enough' on MDI. A bit too much here, not quite enough there... make up the differences with meal doses and guesswork. With a pump, the flexibility of multiple basal patterns which can be tweaked and changed with almost infinite precision mean that I can adjust things so that I am actually starting from a level playing field. To my mind, basal is the bedrock of my BG levels. If my basal is out, even by just a little bit, my meal doses and corrections just do not play fair. So I no longer have to worry about stocking up on carbs before bed, because my basal insulin should hold me level and when I need less insulin overnight I get less. Where I need more just before breakfast, I get more.

If I want to give a really accurate dose, I can.
My doses on MDI were often a bit 'ballpark' to be honest. I have always counted carbs and altered my doses based on what I am eating, but I usually rounded up or rounded down to make things easy. Plus I would use insulin:carbohydrate ratios that meant I didn't have to get a calculator out all the time. The Accu-chek Expert was a great tool on MDI for tweaking doses, but I was still using a 'whole unit' pen so there was a degree of rounding even then. Now I can bolus in decimal places. And those tiny tweaks of insulin here or there do seem to make a difference. True enough my carb estimates are still often done by eye, but at least one part of the puzzle is now being calculated and delivered precisely.

If I want to stop here for lunch, I can.
This was the biggest surprise for me. Rediscovering spontaneity. I began pumping with an fairly entrenched anxiety about being hooked up to something 24/7. I know almost no one who has not had that when considering an insulin pump. Many people say that within a few weeks (days for some people) they become completely at one with their new robot pancreas and never give it a second thought. I can't say that it was quite so quick for me, but certainly in less than six months I had stopped noticing being attached at all and my emerging 'unthought' behaviours (like automatically hooking it to a t-shirt when getting changed) meant I never really gave Artoo another thought. If you are newly on an insulin pump and it still feels a bit of a nuisance or 'in the way' hang in there. Where was I? Oh yes... Spontaneity. So I was well prepared to dislike being attached, but I really hadn't expected that attachment would turn out to be such a bonus. Out on a wander on holiday... get a bit distracted and it takes rather longer than anticipated... Oh this pub looks nice, shall we stop for lunch? What would have always previously been "No we can't, I didn't bring my pens with me" has simply become "Yes!". Wherever we are now I always have my 'kit' with me, and while I used to like the idea of being able to leave all this stuff on a table and just walk around 'like a normal person', personally I have come to realise that I feel much more 'normal' if I can eat whatever I fancy whenever I want to, without having to remember to bring a case full of gubbins with me everywhere.

If I want to have 20 boluses/corrections/snacks in a day, I can.
Well strictly speaking I always could have, of course. But in reality I never did. There is something so easy and effortless about push-button dosing that I am far more likely to add in a fraction of a unit here or there during a day when I recognise that I probably wouldn't have bothered to get a pen out, airshot, dial up and inject. This has increased freedom around snacks too. Where I previously found them just to be too much of a hassle on MDI, almost always resulting is a BG wobble in one direction or other (depending on whether I had bothered to bolus or not) I've had much more success with the effortless mini-doses a pump offers. It's easier, so I bother to do it.

If I want to run a marathon (or just vacuum the stairs), I can.
Again, this was something I more or less tamed with MDI, but the additional options available on a pump, like the ability to set a 'temporary basal rate' for several hours, have added considerable 'polish' to many of those day-to-day conundrums of physical activity. I am far less likely to see my BG levels dip below my target range when exercising these days and I'm buying far less Lucozade!


Just a few things of the top of my head. I'm sure most people on pumps could write their own list. Of course diabetes is still annoying and frustrating quite a lot of the time. A pump is not a magic bullet and it still involves a fair bit of faffing about. But for me having a pump has made a tighter set of BG levels more possible, with less effort and far, far fewer nasty lows.

If you are struggling with wrestling your diabetes into some sort of submission and have been offered a pump as a possible way forward I'd suggest giving it a go.

If I can do it... You can.

Pumping for two months - A little bit of everything

Artoo and I have been pottering along for almost two months now, and what with the New Year and everything it feels like about time for a bit of a catch-up. 

Anyone reading who has watched my transition from pump-averse to pumper might be interested in how I have found it in practice. If you have wondered whether pumping might be right for you,  but don't really like the idea, I suspect this might be doubly so. 

Before Artoo and I hooked up I had read a lot of accounts of people who almost immediately felt 'at one' with their new robot pancreas. People who almost forgot it was there pretty much from day one and while most report that it takes a bit of work to get a pump set up and working well the physical 'attachedness' side of things seems to evaporate. I wish I could say that I felt just this way, but I don't. Not quite anyway. *Almost* all the time attachedness is of little or no importance. I've had nights of uninterrupted sleep. No-one around me has batted an eyelid whenever I've  disconnected or reconnected in public (at the gym for example). Now that I've worked a way of hanging Artoo horizontally on my belt I no longer get dug/pinched in the side every so often. But in spite of all that there are still a few times every day when being attached by a short string to a lump of plastic is a tiny bit annoying. Most regularly i feel this while getting changed, but also occasionally just getting tubing caught on things. I even managed to pull a set out while hoiking up my trousers one day. Almost nothing, but I certainly couldn't say that I 'completely forgot it was there after a week'. 

On the other hand, of course, I have already realised that the 24-hour attachment also offers distinct advantages. I arrived at a meeting not long after a meal only to find that some tasty nibbles had been provided. On MDI I would have had to politely decline, but because Artoo goes everywhere with me I was able to guess the carbs, bolus, and get stuck in! And lie-ins... Aaaaaah! Lie-ins. Since moving my basal injection to the mornings I had needed to keep regular morning hours whether work day or weekend, within an hour or so. But now that my basal is automatically following a predetermined pattern I can sleep in as long as I fancy. 

One thing I hadn't quite expected was how quickly the set-changes would come around. Every two to three days sounded like almost never compared to 4-5 times every single day. In reality though they are quite a bit more of a faff than a single pen-injection. The sets hurt a bit more going in. You have to be quite careful and methodical to make sure you avoid bubbles and so on when setting up the reservoir. Added to that every single set change carries with it a 2-hour period of uncertainty, anxiety almost. Has it worked OK? Is the insulin being delivered? As advised, I make the changes before meals to ensure a proper 'test' but this also means that any slight miscalculation in the meal bolus can look like a potential dodgy insertion. I'm getting better at sensing whether sets 'feel' right in the first few minutes and I've only had one or two that I've replaced within the first hour or two, but it's not something that applies on MDI. 

One peculiar observation from the first few weeks. I know two others who started pumping at almost exactly the same time as me and all of us had the same, rather odd phenomenon in the first few weeks. People often need quite a lot less insulin when pumping, so it's usual for your team to suggest a new total daily dose, basal and bolus ratios. In the first week these new levels behaved pretty well for each of us, but then, quite suddenly at around 7-10 days we found our BG results creeping upward and each of us had to significantly change what had worked fine the week before to establish a new 'normal'. Not sure of it's just coincidence, but if you are about to start pumping it might be one to watch out for. 

And what about levels? After all that's the whole point of the exercise... During these two months I've had a bit of everything. Normality, illness, gym, no gym and of course, every diabetic's favourite mental obstacle-course... Christmas. Even in these early weeks I can see improvements. Fewer hypos and fewer and lower highs. And I have to remind myself that I am comparing with MDI results gained while using the Accu-Chek  Expert, which (once I had it set up right) provided a general 'smoothing out' from the levels I achieved before that. 

I've had some spectacular successes, and a few (largely self-inflicted) disasters too. The subtlety of delivery options is a fantastic addition to the arsenal. I still need to do a little more experimentation, but already the potential is plain to see. Most obviously, almost none of the doses I give these days are in whole units. It's always a decimal point here or there, and while my carb guestimates may be no more accurate, at least the doses are more precise so it's one error rather than two. 

I had expected dual and square waves to be useful for 'tricky' meals, but I hadn't realised how handy they would be at other times. If I'm at the lower end of my range before eating I can just ease the dose in (or just a part of it) over 30 minutes to take the edge off. I'm getting better at remembering TBRs (temporary basal rates) too. I always knew these would be brilliant, but as my experience grows I've seen afternoons playing in the band (with a heady mix of physical effort followed a while later by bursts of stress and adrenaline) that I know from experience would have meant a hypo/high shuffle on MDI pass with bewilderingly serene BGs. Only a couple of days ago we ventured to Bristol's new 'all you can eat' world food market for a leisurely, and not insubstantial, slap-up food fest. Duals and squares (and a few good guesses) left me scratching my head when the awaited BG carnage failed to arrive. 

I've had disasters along the way. For every success there have been wrong guesses and hasty corrections needed. I think it's quite funny, given that it looks like Artoo may well give me my best year of control for a very long time in 2012 that my very first test of the year (at 0.58 this morning) was 17.8 (320). 

Ah well... What's life without a few ups and downs. 

Changes, uncertainty and what to do next

I had my appointment through for my Annual Review a few days ago (due early April). A change of staff at the clinic has meant that they have got rather behind. A week or so ago I called to see how things were going and I was offered an appointment in a cancellation slot. As a result I guess I'm feeling that this appointment represents my 'chance' to make some changes that I've been mulling over and I want to make the best of it.

For many years I just attended my annual reviews in a smile and nod frame of mind. If I mentioned a problem, whatever response I got was either something I had tried myself and knew didn't work, or seemed to relate to an entirely different set of circumstances. These days I like to go armed with a few thoughts, questions and, sometimes, requests for new things. This is easy enough when you have heard of a thing that seems to solve, very neatly, a problem you are having. When I had a period of time struggling to remember whether I'd injected or not, a pen which recorded doses and timings automatically was an ideal solution.

So ever since my appointment came through I have been wondering what to do next. There have been whole weeks recently where I've been grin-inducingly happy about my levels. Weeks with no hypos at all. Weeks with very tight control and few if any results outside my target range. Periods where I have felt that I'm winning.

But the weeks when it is not like that suggest that it can be even better.

I've been wondering about my basal for almost all of the time we have been writing this blog. If you are a regular reader, you must be sick of it. The problem is that sometimes it works brilliantly. And sometimes it doesn't. There is an alternative analogue basal (Levemir) about which I have heard Very Good Things for a long time. One of the apparent benefits of Levemir is that it is more responsive to change than Lantus, which can take a day or two to settle into a dose change. Another factor is that it can work well split into two doses. I tried this with Lantus but it didn't work for me. A person's basal requirement is unlikely to be exactly uniform throughout the whole 24 hours. The opportunity to have 2 phases of basal insulin, perhaps one with a bit more, one with a bit less, combined with the rise-and-fall activity profile of the insulin itself gives you a few more options. The job of basal insulin is to hold you steady while your liver is deciding whether to trickle a bit more or a bit less glucose out at that time of day.

Of course the most flexible, tweakable and tailorable basal pattern would be achieved with a pump. To be honest the most flexible, tweakable and tailorable delivery of any insulin would be a pump. About a year ago I wrote a post about not wanting one. In the 12 months since, I've changed my mind perhaps 100 times about whether pumping is right for me. That's before we even get to the question of whether or not any funding-application I made would be supported.

In the last few weeks it's been going round and round in my head again. Benefit. Drawback. Benefit. Drawback. I think I'm now prepared to accept that the fear of 'attachedness' would come to nothing. Everyone seems to have it beforehand, and no one seems to care after about a week. At least not enough for it to detract from the positives they are experiencing. But I still do have genuine concerns over delivery failure and finding good spots for an infusion site (one side of my abdomen is a bit dodgy absorption-wise with some lipohypertrophy from years of lazy overuse).

At the end of the day it feels like any change in regimen has a benefit vs hassle balance that needs to be weighed. If I went Levemir I'd be adding an extra basal injection at some point in the evening. Mostly this would be fine, but some nights it could get right in the way. And any change of insulin would require a fair bit of faffing about getting the doses and timings right. I could, unlike Lantus, get access to a 0.5unit delivery device which recent experience suggests could be well worth having.

Switching to pumping, of course would involve faffing of a whole different order of magnitude. But the potential benefits that I've read about so often still shine out from behind the wall of uncertainty and concern in my head.

I just don't know.

Update: D-Art Day : The path of least resistance