I’m writing this topic with a pump strapped to my thigh, I’ve gone with plastic canulas although I wish someone would’ve warned me about how long the insertion needle is when you pull it out!
I know its only been a few hours, but so far its less intrusive than I thought it’d be which for me is what I wanted, when I deliver a bolus it stings a bit but I expect that’s just me getting used to it.
I’m also writing this with a stupidly high blood sugar as I’ve also found my first ‘gotcha’ in things not to do (or assume) following a stupidly low reading!
Cor! You’re in for a fun week Paul! I took quite a while to get really used to the pump – I found the first few days fine, but then you start fiddling around with settings and starting to use the more advanced features which is where I found it more taxing.
It’s like having to learn a whole new way of doing diabetes – which, of course, it is! Good luck, let us know how you are getting on!
So when its behaving itself its great, when my blood sugar soars rapidly for reasons neither me nor the pump can work out its less brilliant.
We’d gone out for sushi & my blood remained stable at 5.7 all day (thank you extended bolus!) I then raised to 18 in the wee hours of the morning & had to fight to get it back down.
I think the pump is teaching me not to be too smug! I’m also finding that it seems to nag me like my mum …
“are you sure you want to bolus for 15g of carbs without checking your glucose again”
… But I only did it 10 mins ago …
“Really? You really want to bolus without checking”
… It’s been 10 mins, if I knew then I was gonna snack I would’ve told you ….
“Really, no blood test”
… Yes god damn it! Bolus me …
“Fine , I will, but you go to your room with your head low from the shame”
… Gulp …
On a more serious note, is there anywhere I can easily get iv prep from until I get to see my gp?
For what its worth, I find that, when my levels go over a certain point (for me is about 14) then my correction ration no longer works, and I have to add about 30% to make it work.
Other people will have different tipping points (or none at all) and different additional levels, but its worth keeping an eye on to spot your trends.
It’s been a while & I have my first proper consultant meeting tomorrow.
It’s fair to say that my control under the pump is pretty terrible at the moment… But mostly its things which I can see how to change & hopefully from tomorrow things will get better.
In general I’ve found changing canulas easy, refilling the reservoir easy….
Things I’ve found difficult … Getting control, the 3rd day on a canula (damn its getting sore & why aren’t my blood sugars going down).
For those who worry, I’ve found I forget that I’m wearing the pump, my reactions ate now a lot better for when I drop the dang thing, sleeping with it isn’t the biggy I thought it’d be & errrmm… It’s fine for other non-nocturnal bedroom activities.
Some of my symptoms have changed, I’d say they’re possibly closer to what they were before I was diabetic (although its hard to remember that far back!)
Things I’ve learnt… The pumps not a quick fix, I new that but its worth pointing out again! Things are getting worse before they’re getting better & things you thought you knew … You don’t! ….. It’s very different getting control on a pump!
Specific to my pump/meter combo. Settings are everything, my meters bolus advisor gets to comatise me everyday because my basal settings aren’t right… Don’t blindly follow advise! The meter is annoyingly less reliable in accepting strips & accepting blood than the smaller older version I had… Annoying!
I still havent found any iv prep wipes whilst I’ve not had any dodgy sites my ocd would be happier with a nice sterile site.
If people don’t get too bored I will try to keep updating this, my intentions not to put anyone off but just to document the work needed to get control & the advantages & disadvantages that come with it.
I notice @tim made a post (somewhere) that everythings going well for him but its taken him a year if hard work & adjustments.
Gosh. I was lucky I think when I started it all seemed to go pretty well, it’s now I have problems as pork insulin always has a hangover as it has a longer period of action so I’m always having to think about that.
One thing i did read a long time ago was some research on insulin with and insulin without preservative. Insulin sites which were the ones with insulin going in without preservative stayed uninfected for longer than those with preservative. The conclusion was that the body’s own white cells, which are WAY better at clearing infection than phenol, were doing a better job. And that, as well, phenol was probably inhibiting the action of the white cells present at the other site. Since then, even though it Is different, I haven’t used wipes before putting on my sets, and very rarely get infections. In fact hardly ever had one.
Good luck Paul, when you get it right it is so much better than all other ways!
@furrypaul – I think your experience is not wildly different from mine! I found the button-pushing element and living with the pump dead easy; but – by heck – it’s difficult getting all the settings right. It took me about 3 months to get it all tickity-boo.
There’s just so many variables to get right – have you gone high because your bolus calculations are out or is it because your basal levels are wrong? Who knows?!
For the first wee while I purposely kept my BG high and fiddled about with all the different settings in turn – morning basal, evening basal, night basal and so on and so on; waiting three days before changing the next thing. Eventually I got it right most of the time but it’s still not perfect – I don’t think it ever can be.
Anyway, do keep us updated – it’s really interesting to share experiences of starting pumping. And don’t forget while only a few people will comment a zillion lurkers will be reading and possibly getting something from you experience. That’s the plan anyway!
Oh, in terms of the meter – I used the one that came with the pump for the first month or two and then decided it was crap and went back to the Freestyle Lite. I then manually add the readings into the bolus wizard when I need to.
@furrypaul Thanks for sharing this, it sounds very familiar and it sounds like you’re tweaking away in the right direction.
Re IV prep, I chose not to use them based on the logic of thinking that as I’m otherwise healthy with reasonable glucose levels I think my body should be able to fight off a bit of muck and the challenge to my immune system will do it good. Sheer laziness came into it too. I’ve never had an infection at a site (touch wood, clutch rabbit’s foot etc) which proves nothing, but means I continue to run the bacteria gauntlet without the aid of antibacterial gunk.
As I’ve written before I was previously in the undecided camp with the pump but having been given the option I feel I’ve nothing to lose. Mine should be coming in the next month. The tips of someone a few weeks ahead of me is priceless and as Tim says (and I believe him, ‘cos he’ll have the stats) there’ll be plenty on here browsing but not speaking – hi y’all, join in, you won’t get laughed at or mocked. Much.
Interesting comments on the meter. I’ve slowly got them stacking up in my drawer waiting for the selected one to be chosen after P-Day and I just ordered a Contour to have a play with before the pump arrives. Auto-transmission sounds a huge plus but it’s interesting to hear others who just do it manually.
@seasiderdave and I have been comparing ‘should we? shouldn’t we?’ notes on Twitter for a while and through some bizzare fluke of dia-cosmic coincidence (sun spots? ley lines?) we are both now turning to the ‘dark side’ at almost exactly the same time.
Given my pump-averse position a year or two ago (feel free to snigger at the back), I’m a bit surprised myself. And if it’s not as AMAZING as you’ve all been telling it absolutely is I will a) be quite surprised and b) feel completely at liberty to glower darkly and moan a lot (no change there)
@seasiderdave & @mike .. it’ll be interesting to hear your opinions when the day arrives as I too was a pump non-believer! What pumps have you chosen/have corrupted you to the smoldering gates of hell?
After seeing the consultant today, I’ve got to do fasting tests to see how my basal rates are performing… I already knew that but hearing it will prompt me to (grumpilly) do it.
I will say to anyone considering a pump that my hospital have been ace with the support.
@tim and @alison – you mean that when it mentions a wizard it’s not a little guy with a pointy hat looking at my figures and magically giving the correct insulin dose at the correct time and checking everything is working as it should? Yikes. Nurse, I may have changed my mind!
Pumping is definitely the dark side but hopefully me and @mike have made the correct independent decision.
@furrypaul for me it is the Paradigm Veo and it is the one I would have chosen if it wasn’t the only one on offer to me. The possibility of the wireless CGM, even if not funded yet, makes it the right one I believe. I also think that if I carry some garlic to ward off the evil spirits I’ll be OK with it.
Good luck with the fasting.
@seasiderdave If you brief your wizard well with the correct ratios and be very nice to him, he comes up with some good ideas ( https://www.shootuporputup.co.uk/2009/07/diabetes-wizardry/ ) and I find that if you drink enough alcohol you can see the little wizard hovering above your pump. If the ratios you’ve given him aren’t right, he’s about as useful as a random survey of people on the bus to ask how much insulin you need to take for breakfast.
The dark side is getting more over populated by the day!
I went for the Veo too – see @alison you are SO persuasive. Are you on some kind of kick-back commission?
I’d read some posts on *another* forum [sorry @tim] about Roche pumps failing (though DSN said they had no more chance of problems than any others), and like @seasiderdave the, frankly incredibly unlikely, possibility of adding self-funded CGM-ness was another big win.
@seasiderdave Yes, all pumpers need to bathe in surgical spirit daily to avoid site infections. You soon get used to the smell
I haven’t ordered it on prescription for decades, I just remember us having a bottle in the cupboard that was prescribed to swab my skin with as a child before injecting – thankfully my parents decided against actually using it on me, otherwise I’d have skin like leather now!
@tim No, we’d gone posh that night and were drinking beer instead
@mike I think I read the same forum posts regarding the roche pump… I paid them no attention & chose it anyway.
Ok, I am a self-proclaimed roche fanboi but there looked to be a little vengeance in the posts to me & whilst wearing my engineering cap i found some parts of the posts doubtful.
Just to clarify my earlier post was concerning the remote/meter part of the roche accu-check combo which is annoyingly less reliable at accepting a test strip than their normal meters & its too easy to assume its ready & get blood everywhere as you try to remove & reinsert the strip.
It may also just be I’ve got some dodgy batches of strips as they’ve all had the same codes, or it may even just be me being grumpy!
@furrypaul I’ve got had an Expert (very similar to the Combo handset I believe) for almost a year now, and I’ve noticed that the time from strip-insertion to ‘ready-to-be-soaked-in-freshly-squeezed-gore’ does seem to vary quite a bit every so often. Then again, maybe I’m just in more of a hurry some days!
Not sure what I’ll do post-pump… I think the teeny-tiny ContourUSB will talk to a Veo wirelessly so that might be worth a thought.
My experience with my Combo meter is that it gets less reliable at taking strips as its battery gets close to needing renewal, or when its cold (cos batteries work less well then).
It does occasionally do it at other times as well, just to stop me getting complacent about it…but not very often.
(And I got a Roche pump because – that was the only one on offer. And if I wanted a different one, well they dont do them at my clinic. Although it has got better, they’re considering the Omnipod things now as well. And I like the remote. Its very useful when my pump is in my bra…)
My latest fun experience has been flying with a pump.
The journey out was ok, although the poor bloke who had to prod, poke, metal detect, stare at, fondle & swab everything was very flustered.
I got the feeling it was his first week as he went “blimey, this is a bit intrusive & OTT”, he repeatedly apologized & asked if I wanted to go “somewhere more private”… I just told him not to worry, I like it when other people watch!
The way back was more interesting … The pump & meter aren’t supposed to be x-rayed & stupidly I hadn’t bothered to revise my medical phrases.
The pump was fine, but the meter/remote was problematic with me completely forgetting my language skills as I panicked “Nein, nein, bitte wirklich nein, bitte, lederhosen I mean ihre medezin”
After several confused looks, one of the security staff realised & seemed vaguely amused by my mad broken German panic & asked me some sensible questions in English before explaining to her colleagues why I was flustered.
.. next time I think I may just attach the pump to the meter for the security check, but all in all it went relatively smoothly.
Oops, I’ve always x-rayed my meter, it never occured to me not to! With my pump, most of the time they just look a bit bewildered, sometimes they swab it for explosives but mostly they just let me through without any problem.
I nearly ended up strip searched as a teenager in Frankfurt airport, having tucked a pack of fruit pastilles in my knicker elastic for a bike ride that morning as I had no pockets, forgot all about them, only to have them discovered whilst being frisked. I think in they end they just thought I was mad and let me go!
I’m not sure I really believe that the meter would be damaged but I figure at the moment (until I become blasé about it) I’ll follow exactly what they tell me to do with the expensive NHS funded critter.
I’ve gone through my basal tests & they look good to me but I have an appointment to discuss them tomorrow, I’m currently wondering if my carb & correction ratios have changed or if I’m having a problem with the type of infusion set I’m using as the absorption seems to be so slow.
Okay, they calculated new carbs & correction ratios for me & whilst its only been a few days, it looks like I’m at least as well controllled as I was under mdi.
Now the hard work starts of getting my hba1c as low as it’ll go (although my hospitals gone to that damn American system now!) At the moment I can see (i think, a few areas for improvement which I couldn’t have done under mdi)
If you’re starting out be prepared to do hard work & research, my nurse who’s been a pump user for years disagreed with my initial thoughts on the problems till I gave her enough proof… Everyone see’s control in different ways!
Thanks to everyone for the help & support over the last two months!