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Pump diemma

NinaB73

Well-Known Member
Messages
196
Location
Devon
Type of diabetes
Type 1
Treatment type
Insulin
Right, so here it is, I tried a pump the accu check combo three years ago and I gave it a shot for six disastrous months! I so wanted it to work but alas…The reason I am posting is because I am contemplating another go, so I will highlight my problems and hopefully some of you experienced long time pumpers may be able to help me with my decision.

Firstly and most importantly I had major canulla problems in that it was fairly hit and miss if the pump actually worked most of the time, I went into ketoacidosis a couple of times due to this which is something I hadn’t experienced so badly since diagnosis and I have to confess frightened me half to death. My sites just didn’t seem to work a lot of the time.

Secondly I had a nurse which I failed to have much confidence in. She went on holiday for two weeks following the set up of my pump and there was nobody else pump trained to help me. This is when I landed my first trouble and I have to say roche were great and I had to revert to my pens but later my nurse told me another patient had ended up in hospital whilst she was away and she felt really bad....I would have preferred to have started when there was support around.

Fast forward…when I gave up the pump, I kissed my pens in forgiveness and despite my consultant saying ‘do you want to try a different pump?’ I said ‘no’ I’ve had enough!

I’ve read a lot on this forum that makes me feel a little more confident about having another go.

My major concern obviously is site issues, but I have read that others have not been able to site in the abdomen?? This was the only site I tried.

Secondly, I had to actually turn my pump off in the morning when I am most active as my hypos were preventing me from working due to driving.
Also rapid acting anologue insulin.may be a factor. I have dried it on MDI and I find it too ‘severe’ if that makes sense? So to have it continually in a pump is a concern.

My consultant has offered me ANY pump and I know I am privileged but the truth of the matter is I am nervous but yet tempted.

My options are; to go back to the nurse I have no faith in or try a different health authority (50miles away) and give it another go…but can't guarantee I would get one with them.

Thoughts would be appreciated.

Sorry for the long post but a know you folk will have some thoughts!

Nina x

Also my consultant has said there are different canulla options available now since my time on the pump?
 
@NinaB73 My first thought there is that you may have been using the wrong sets for you. Did you try a variety of sets?

Your comment about having hypos in the morning I can't understand. Not blaming you at all because it sounds like you had very poor support, but a pump is one of the best things to reduce hypos.

Contrary to what you might have been told, you don't have to use analogue insulin in a pump. I use porcine insulin

If you've been offered a pump, I'd say give it another go. Get the Pumping Insulin book, choose a good pump, make sure you get a big selection of sets to try, and don't let anyone bully you into using analogue insulin if you don't want to.
 
Disclaimer! I'm very new to the pump!
I've just started on the accu check insight, this was chosen for me because I'm on very low doses and I'm very insulin sensitive so that could be an advantage to you, particularly in the morning. My basal rate started on 0.27 u per hour.
My DSN reduced my TDD by 10% prior to pump start as insulin is more effective on a pump than MDI, so I'd make sure you do something similar if you decide to go for it! This prevented me from going too low.

Getting your basal right prior to pump start is really helpful, then tweaking it once you 'go live'
I've now upped mine to 0.30 ph and 0.33 to begin to tackle dawn phenomenon.

Early days for me, slowly changing one thing at a time, monitor for a couple of days before changing anything else.

I don't know if that's helpful to you at all? like I say, I'm very new but my DSN has been fantastic. I had two 2 hour appointments with two specialist pump nurses then they phoned me every day for the first 5 days and saw me in person once a week.

I'm not seeing her now for 3 weeks but if I phone her, she'll fit me in.

It's been excellent.
 
@azure I thought I remembered that you didn't use analogue insulin, but how hard was that to achieve? and get past the professionals. I've found it hard on MDI not to have rapid acting insulin. Like I say my nurse is very one tracked, this pump, this insulin! but my consultant is different, but he's not the one setting it up!

I did try all the canulas for that pump and they were all the same but I did suspect that although my abdomen was the best place to inject it wasn't necessarily the right place for a canula. I didn't really realise there was other sites I could try, in my naivety I didn't even question trying it somewhere else.As for the hypos in the morning, I'm not really sure what that was about! I think my rate upped to deal with DP from about 5am (I am casting my memory back!) and I am most active in the morning and do quite a lot of physically active work and dog walking, all I remember is having to turn the pump off much to my nurses horror! but I went down to the lowest rate and still hypo's all morning!! I just felt in the end that I knew where I was with MDI and I didn't with the pump.

My gut feeling is take a gamble with another health authority, just to get the support.

I may quiz you at a later date @azure if you don't mind x
 
It wasn't too hard to get the porcine insulin. I made it clear to my consultant that I was determined to have it : D She asked me a few questions which I answered with the help of the IDDT and then she gave me the go ahead and wrote the prescription My DSN/pump nurse never questioned that.

This is the second pump I've used porcine in and I haven't had any issues at all.

I don't use my tummy for sets any more as it doesn't work (I used it for the first few years of pumping). I use my bum and my legs

Don't let people tell you what to do. It's your diabetes

One thing I will say though is that you need to get the hang of a pump. My DSN helped me for the first three days, phoning to check my BS and helping when I was unsure if I'd put a set in properly, but I've always altered my own basal and done my own ratios after the initial set up.
 
@Claire007 That information is very interesting and I can see you prepared yourself in advance well, something I probably didn't do too well and then unfortunately was left to my own devices! I take on board what you say and I think my hypo's could of been dealt with much better. Your level of support from your team is probably what I was expecting but didn't get!

I will take your tips on board because I think they may be useful should I go down that road again again, thanks x
 
When I started on my pump I was put on the same fast acting insulin as I was already using, majority of insulins should be available in vial form for you to put in your pump. Sites for cannulas are an individual thing, I use my stomach, but people in my group also used to put in their thigh as well. Just like injection sites the site of your cannula will affect how quickly the insulin is absorbed into your blood stream, stomach being the quickest absorbtion rate and thighs and buttocks being slower. different sites also suit different cannulas. I use a different cannula when site in my thigh to what I do in my stomach. I have a Roche based pump and they are more than happy to supply me with different amounts of different cannulas each three month order period. When I used the same cannula in my thigh it kept working its way out, which was quite inconvenient! Maybe I just have a really good team, you should get to try them all on your pre pump clinic to see which is most comfortable and your DSN should not have gone on holiday just after you had started, they should have re arranged it to start when she came back, which is probably more of an admin thing. If you decide to try again, make sure you check all these things before you start, it is very important....also we are here on the forums to help you with anything as well if your specialist team is not that greeat.
 
Hi @NinaB73
I think you should give pumping a second chance , especially if you can try a different clinic.

I tend to use my arms for siting my omnipod ( with very good success )
 
Hi @NinaB73 i'm also on a pump and use porcine insulin. I've been on that insulin for many years and refused to switch. With a bit of help from arguments and info from iddt the hospital came round quickly. No i didn't get much help from the dsn but i'm quite confident about changing doses and quite aware of my usual peaks and troughs and operated accordingly. Ultimately all a dsn can do is try and interpret whether your highs and lows are due to basal or bolus. Read pumping with insulin and you can get a good feel on this too. Where they are good (in some cases) is showing different sets and different ways to insert. Also bear in mind that if you switch between sites this may alter your basal.

I would recommend that if you do it again it's worth buying a libre to observe your usual schedule before going on the pump and the effect once you're on the pump as to whether your basal is right. You can buy a single libre for £50 and read it off a smart phone. A sensor lasts for 2 weeks.

Good luck with whatever you decide to do.
 
I have been pumping for just over a year. It took me some months to get used to (and there are still times I long for my pens) but overall I think it is worthwhile for the extra control.
One of the hardest things seems to be getting the basal dose correct at different times throughout the day. There is always some trial and error and often a problem with "left over Lantus" for the first week. I was lucky to have a CGM for a week. This was purely fr my nurse to understand my daily basal requirements. If possible, I would recommend this. If your healthcare team will not provide this, try to get on a Libre trial to save you the £50.
Regarding cannula sites, most of the time, I have used my tummy area. If I am exercising, leg sites increase my insulin absorption rate too much and my lower back/upper bottom is uncomfortable. I have heard upper arms are a possibility. However, unless you have an Omnipod, you will need somewhere to put your pump which could be a challenge and some help inserting the cannula. I have experienced a couple of problems with my cannula (ketones suck) but learnt this is when it is not inserted correctly and can now recognise what a bad insertion looks like. Like everything else with the pump, it is more diabetes learning to get the most out of it.
 
definitely give it another go and even more importantly, use all the sites available to you....
 
@Vwhite1980 your information is a great help and yes you did have a good team 'pre pump' clinic??? Lol
I did equally find Roche so helpful! They were in fact amazing when I phoned them at 11pm cos my nurse was on holiday!!! I can't really fault them, I know they have a hidden agenda but I think I would of got on much better with them in charge!!I will take all your tips on board and in fact when I posted I didn't get a huge response and now I have I am a little overwhelmed but everything is positive and I am still taking in all your experiences, so thank you for yours N
 
himtoo said:
Hi @NinaB73
I think you should give pumping a second chance , especially if you can try a different clinic.

I tend to use my arms for siting my omnipod ( with very good success )
Click to expand...
@himtoo thank you for your reply, I am of course offered ANY pump....we'll see! I know my health authority supports accu-check but my consultant mentioned the omnipod so he does seem open to what I would like, which is cool!

Interestingly at my consult I asked him if I would still qualify for a pump as that was a few years ago and I have made great positive changes on MDI. His answer "the criteria for type 1's... type 1's that have trouble with hypos and can't get a perfect hba1c?" That's pretty much all type 1's!! (No offence to type 1's that don't fall into that perfectly controlled category, not my words) I think what he has implied is that all type 1's should be offered a pump!! ( and more importantly the one they wan't) Shame he can't stand in June, Lol ,
 
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@tigger thank you for your advice and I have contemplated funding CGM for the startup for my pump! Simply because I struggled so much last time and if I am honest after reading yours and @azure posts I know I can probably sort things out myself! I probably relied too much on my nurses input (why wouldn't you?) I will read and research loads this time! And bend everyone's ear on here of course!!
 
@helensaramay Thank you! You have obviously been through a few ups and downs and trial and errors! But you are finding a way which is encouraging! I can't imagine getting a trial CGM out of my health authority! Would have been good! Just hard work working it out for ourselves I guess, Which pump are you enjoying?
 

I'd recommend the book pumping insulin - https://www.amazon.co.uk/Pumping-In...id=1492806924&sr=1-1&keywords=pumping+insulin

I read that before starting on a pump, I had a CGM and I didn't really need any support after starting. It's perfectly possible to make the adjustments yourself and be in charge of your pump start, that would alleviate reliance on the nurse you don't have faith in.

Omnipod does automatic cannula insertion. That might be a good thing if you had problems with cannulas and it works for you. Or it might be a bad thing because there is only one cannula option with it. Maybe ask for a dummy pod filled with saline to test it out first, if you're considering omnipod.
 
If your healthcare team won't arrange a free Libre trial, why not contact Freestyle themselves? They are the guys who want to sell the Libre. To be honest, I got the feeling my local healthcare team didn't like the Libre.
As for pump, I use an Animas Vibe. Unlike others, to save money, my healthcare authority only provide this pump. Apart from looking like a pager from the 80s, it seems to be ok and the Animas support team are very good ... although they only provide a phone number contact and I prefer email but that's personal preference.
 
Not sure if anyone has said this yet but pumps offer an "extended bolus/square wave" feature whereby a bolus can be delivered incrementally over a time period of your choice. This has a similar effect to using a slower-acting insulin. But since you can also do boluses in one shot, this gives you different options for different types of meals.
 
Yes @catapillar I fully intend on reading that book as it comes so highly recommended! I have the next few months to think this through and through my own choice, 'do the research'.
I am coming round to the idea of learning it all for myself and the last time I had a pump I didn't know about this forum. Interestingly I have an amazing practice nurse at my surgery that runs the diabetic clinic, she is of course not a DSN, shame as she would make a good one! Her knowledge far outweighs my hospital DSN and she also told me she has another patient whom literally took the pump and went off on his own and used forums and suchlike to sort it out himself. I think she is trying to encourage me to have the confidence to go it alone if need be!
To be honest I didn't really have a problem with canulla insersion more about a reaction to the canullas, which is more worrying! Am I right in thinking the Omnipod only has the steel canulla? which is the one I had the most problems with so as you say wouldn't give me many options to go on to should it cause the same problems. I must admit I am probably tempted by the Omnipod because of the lack of tubing but I think realistically I'd rather have a pump that is comfortably situated. I do think however that siting in the abdomen may of caused me problems and should of probably tried elsewhere. Also Omnipod I believe has no CGM compatibility?....
Thank you for your input, much appreciated!
 
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