Help please new to pump!

[Anna1]

Hi

After struggling for past 6 months with MDI injections I have now been approved for a pump. (been diabetic for 10 years but only struggled last 6 months) The reason is mainly that my background insulin needs vary considerably during 24hrs with dawn phenomenon in the morning and very sensitive and needing very little at night.

Currently on 17 Levemir AM and 4 Levemir PM. Currently waking on 13 due to dawn phenomenon but night time dose not strong enough to bring it down and if I take more then go low around 1am. In the evening I then start dropping before my evening meal.

Anyway my diabetes nurse isn't the best for information and although I have done a carb counting course before and know how to carb count I know absolutely nothing about pumps. As I understand it they are arranging for me to meet a pump rep from Medtronic and Roche to see which one I prefer and they will then order this but that's all the training I get. I asked my nurse if I will go to some sort of pump class but she said no it's just trial and error? Is this was other pump users have found? How am I supposed to know what to do? Also my background insulin needs vary so much how will I get the right dose to start? My nurse said you just take your total daily dose -20% but I currently can't use the same amount for 24hrs and according to these calculations I will be on the same dose for 24hrs which will be too much for night time?

Any help would be much appreciated bearing mind my nurse said she helps with the dose calculation as above but otherwise doesn't know the workings of the actual pumps!!

 

[Sally71]

Pumps are perfect for people who need variable background amounts, because you can change the basal amount by the hour and have more when you need it and less when you don't. For example on school days my daughter's basal varies between 0.78 units per hour mid morning and 2.40 during the early part of the night. Then we have a completely different pattern for the weekend. Setting up the right pattern for you will take a lot of trial and error and a lot of testing and adjustments, but you'll get there in the end (although it never stays the same for very long!). Pumps can also do more accurate dosing, food boluses go to the nearest 0.1 unit and basal doses are even more accurate.

When my daughter got her pump she was part of a trial comparing pumps with MDI so we didn't have time for lots of training, we had to be up and running quickly. The pump rep and nurse helped us do the initial set up, taught us how to fill it and insert a cannula and do a basic bolus and so on. I think the initial settings and basal rates were all done by the pump rep based on their own calculations and then we tweaked it from there over the next few weeks (with the help of our nurse, we are lucky though and our medical team are very pro pump and know all about them). Then we had lunch (doing our first meal bolus unsupervised, reading carb info from packets), then had half an hour with a dietician to learn all about carb counting, then we were given a copy of Carbs and Cals and then left to get on with it (although to be fair we did have loads of hospital appointments for the first couple of months and we learnt as we went along). Some people get more training and get to run the pump just with saline in it for a few days first, it varies a lot according to area and how clued up your hospital team are.

Hope it goes well for you, it will probably be quite hard at first but try to persevere, very few people who switch over to pumps ever want to change back once they have got used to it. There is also a very useful book, Pumping Insulin by John Walsh I think, which you might find useful. Good luck 🙂

 

[trophywench]

I can't speak for Medtronic since I've only had Roche pumps - but their software has an algorithm to suggest a basal pattern once you tell it your TDD basal - and have to say - my hospital reduce it by 30% for starters.

You need something basic, you can't start really properly basal testing anyway for at the very least 3 days since we have to get every single trace of old basal out of your system.

Then the hard work starts with lots of basal testing and eensy weensy adjustments.

To have the desired effect on your BG, with a pump and only 'fast acting' you have to implement the changed hourly rate some 2 hours before you need to see it.

 

[everydayupsanddowns]

Congratulations on being approved for a pump @Anna1 - sounds like it will suit you very well, hope your initial appointments go well and they listen carefully to you when sketching out your initial settings.

I would certainly recommend ‘Pumping Insulin’ by John Walsh / Ruth Roberts. Known as the Pumper’s Bible, and an absolute treasure trove of brilliant information and advice on getting the most out of pump therapy and when and how to adjust settings.

https://www.amazon.co.uk/gp/product...=1884804888&linkCode=as2&tag=everydayupsan-21

 

[SB2015]

Great to hear that you now have access to a pump. It is for exactly the problems that you outline about needing a variable amount of background insuiln, that the pump comes into its own.

It is likely that they will set you giong with a basic basal rate programme and then teach you how to adjust it to match your needs. It takes a bit of work but it makes life so much more flexible and matches your body needs more accurately. Still not perfect but a lot better than MDI.

There are loads of other things you can do using your pump, but best to take it step by step. The book Oumping Insulin that Mike recommended is very useful, but not easy reading. It makes a lot more sense once you are actually pumping. There are also loads of us on here who can help with any questions.

 

[trophywench]

Unfortunately - it is more like a textbook and it's not a tome I could ever find riveting. It made no sense whatever to me before I actually got my pump and had got used to it more than somewhat - I was pretty terrified of pressing any of the buttons really at first TBH.

I can say that Roche have a brilliant helpline and their reps are also completely helpful so you would have a brilliant resource - I would think that Medtronic are just as helpful too but have no personal experience. I'm naturally worried if your Clinic are so apparently clueless about pumps though - mine were and are completely au fait with them and I never felt I was on my own, ever (and still don't) - especially with the comfort of this and another forum I belong to available all day and some of the night 365 days of the year.

 

[everydayupsanddowns]

Unfortunately - it is more like a textbook and it's not a tome I could ever find riveting. It made no sense whatever to me before I actually got my pump and had got used to it more than somewhat - I was pretty terrified of pressing any of the buttons really at first TBH.

Horses for courses I guess. The first 10 chapters are basic background info, including what to look for when choosing, and what sorts of situations/people a pump might be good for, so some of the book has usefulness in those 'I'm seriously thinking about this' or 'Yikes! I've been approved... now what???!' times.

But yes, I agree some of the detailed tables and guidance for tweaks, changes and settings only really make sense when you've got a few weeks/months of pump life under your belt.

 

[HOBIE]

Pumps are so adaptable for the individual. It takes a few weeks to got tuned to yourself but they are good. 🙂

 

[Anna1]

Thanks guys - so helpful and nice to know you're there as this is a totally new chapter in my diabetes life and a bit scared - especially as I live on my own. Have this horrendous thought that I will switch it on and immediately drop into hypo - hence why I'm worried about initial settings. My dawn phenomenon is so strong but not always the same so again not sure how I will set the 4am - 10am setting and the same for the evening as after 6pm I just start dropping. If you do have a hypo is it usually easy to correct and do you immediately shut the pump off and change the settings? Working out from my Levemir I think I should be on something like 1.4 units per hour 4am - 10am then 0.90 per hour until about 6pm then 0.50 from 6pm - 4am but with my nurse saying it should be TTD - 20% it doesn't sound like she's going to be doing individual settings with me. It's the intial settings which worry me most as think it will be like some kind of rollercoaster.

Jenny apparently I get to choose from Medtronic 640G and Roche Insight but looking at reviews online there are pros and cons for both and being a newbie I just want something reliable and easy to use. (Guess we all do lol)

I also find I need less background for some weird reason at the weekend when I'm not working so guess that's another pattern I will need to work out.

Wish me luck
Anna

 

[HOBIE]

Hi Anna you can put a Temp Basal on any time, Certain % & time. Its a good feature when you get the hang of things. Have a look at pump section. I am now on my 3rd pump & Love them 🙂

 

[Redkite]

The usual procedure is to take your current basal, reduced by 20%, and divide this evenly across the 24hrs as a starting point. In the first few days you will be doing very frequent BG testing (we did hourly during the day and 2-hourly at night), and you will very quickly be able to make changes to the basal profile to get the distribution correct for your own needs. Your DSN will help with this. It's hard work at first but you won't regret it!

Re your choice of pumps, we have the Medtronic 640G and find it very easy to use. If you are able to fund the sensors, it really is a fantastic tool, suspending insulin delivery for hypos and restarting when levels return to normal.

 

[SB2015]

One thing that might swing towards the Accu Chek is that the handset is bluetoothed to the pump. Once you haev stuffed your pump away under your clothes you don’t need to touch it, as you can do all that you need to do via the handset. I like the pump being out of sight.

Perhaps if I was able to fund the sensors that can link with the Medtronic I would think about that one, but they are beyond my budget, so I shall stick with my Accu Chek.

When I set my initial settings on my pump with the DSN, we took into consideration the hypos I knew I had at about 4:00 am, so talk to them about your worries, and you can play safe to start with and then gradually change them. Once you know about temporary basal rates you can use these to ‘interview’ a change you think that you need to do before altering all your rates.

 

[trophywench]

Absolutely - about the TBRs - on the Insight it's absolutely simple and logical to set, from Nil upwards for as long or short a period as you want using the buttons on the front - a central button to get from the main screen into the menu, then the down button cos 'Basal' is the second one on there, then central button gets you into the choices there - again down to TBR and then it becomes pretty obvious - it's also just as simple to go back in and change or cancel it ! You can actually do this on the handset but as my pump is normally very accessible in a pocket, I just do it on the pump itself.

The tedious things are tedious on all 'tubed' pumps - a new cartridge/new reservoir and the piston seems to take forever to rewind but I suppose that's only because you can't do anything else while you change it and are able to reconnect to your cannula - then once that's in properly and the pump is happy with it - you have to prime the tubing and that's as boring as hell too!

If your dawn phenom starts at 6 am and finishes at 12 noon - then you have the right times for more basal to counteract it - cos remember? - your basal rate at 10am will affect your BG for at least the next two hours aand it won't be over and done with for at least another two after that.

I highly recommend only changing ONE rate at a time - and only for about 2 hours together - and doing the weeniest adjustment possible too - unless you zoom up to 15 or positively plummet to 'LO' suddenly, in which case you would need larger adjustments - unsurprisingly.

Be methodical and record on paper why and what you did. Slow but sure gets you there!

The very first thing you have to do with any new Roche pump or handset - is to match the pump to the handset - the two of them are now inextricable joined so your handset will only connect to your pump - if we were sitting on each other's laps - I couldn't spitefully or accidentally do anything to your pump with my handset and vice versa.

 

[Anna1]

Hi, So much to learn - what I don't understand is if fast acting starts acting in your body within 20min of going in why do I need to set the basal 2hrs before I actually need it? So if I need more basal at 4am why do I need to set the increase for 2am onwards? So if I go low at say 10am I should change the basal at 8am? This is what I don't understand as it's all fast acting?

Thanks
Anna

 

[Robin]

Hi, So much to learn - what I don't understand is if fast acting starts acting in your body within 20min of going in why do I need to set the basal 2hrs before I actually need it?

Although fast acting starts to work within twenty minutes or so, it has a 4-5 hour profile, reaching its peak at around 2 hrs, then tailing off. ( it was developed to try to mimic how the body deals with digesting a typical meal)

 

[everydayupsanddowns]

Agree entirely with @Robin - and of course your own reaction//timings might be slightly different... you might find changes need to be made more like an hour before. But in general terms, tweaks to basal patterns should be fairly gently curved and should not be expected to have an immediate effect.

On a pump your basal is made up of hundreds and hundreds of miniscule 'injections'. Each having their own onset-peak-fade curves. So in your example, with a hypo at 10am, the basal delivered at 8:01am is still active pretty much at it's peak, as is the basal delivered at 8:01:04... and 8:01:05... etc etc.

As an added complication, you may discover through fasting testing of your emerging basal profile that the hypo at 10am is not entirely basal related. It might be an interaction between basal and breakfast ratio that you have developed as a 'best fit' with MDI. On a pump it is easier to separate basal and bolus activity more fully and you need to use one to prop up the other far less, but you'll need to get your basal profile working first before really fine-tuning with meal ratios IMO. The exception being if your early days on pump lead to prolonged highs or significant hypos, in which case a bit of rough and ready hacking together will give you the opportunity to start polishing things up rather than firefighting the whole time.

 

[SB2015]

It all sounds like a lot to learn, but once you start to use the pump it makes a lot more sense.
I find it is so much more flexible than MDI and I was able to solve a lot of the problems that I had with MDI which had been impossible before. It still took time but it was well worth it, and I would never go back to MDI.

 

[Anna1]

Brilliant thanks. Spent most of this morning battling my dawn phenomenon and didn't get down properly until about 11am - now I'm dropping as I haven't had my dinner yet - so sick and tired of all this up and down. Also I have to eat at certain times. Even if I am high in the morning if I don't eat breakfast I start dropping then as soon as I eat something it goes high and I struggle to bring it down. This evening came home with no novo rapid acting and just keep going down but even if I eat something with no carbs like a cheese omelet as soon as I eat it starts to go up slowly. Wish it would just be stable for once!! Just don't know what my liver is doing? According to what I've read my liver should release glucose if I'm fasting but my BG always goes down until I eat. So you would think this means my basal is too high but once I eat I struggle to bring it down. Just hope the pump will offer me more flexibility with meals. Did you guys find that hypos are easier, harder or the same to deal with on a pump?

Thanks
Anna

 

[trophywench]

Initially they are the same, still need to respond pdq and get the carbs in - but thereafter different because that basal isn't contributing to the BG for the next 12 hours like long-lasting basal is. Even if you don't immediately start a TBR, the effect of just dripping insulin in every few minutes, rather than have a great dose of it already in your body waiting to release - is far kinder. It is, after all, more like a normal pancreas than the MDI basal method ever could be.