Pump basics

[Snodger]

Hello pumpers!

Being an injections type of gal (so far), I haven't looked around this bit of the site before, so please forgive this very basic question. Do you have a pump FAQ or newby answers section anyone could direct me to? I'm looking for very simple info - just things like, how frequently you have to change sites, how you put the insulin in the pump, how many pieces of equipment you have to manage/keep track of...

all advice gratefully received

Snodger

 

[cugila]

We don't have anything specifically written here on the forum, however there is this from the Community pages.

http://www.diabetes.co.uk/insulin/Insulin-pumps.html

A 'Sticky' in the Insulin Pump Forum.

viewtopic.php?f=14&t=6699#p56401

There is also this useful website : Insulin-Pumpers UK.

http://www.insulin-pumpers.org.uk/

 

[Snodger]

brilliant cugila, thank you.

skimming through the sites they seem to mostly say you change site "every few days" - just wondered what people here do, is it every two, every three days, what makes you decide to change?

 

[ams162]

we change every 3 days on dylan and we do this because our dsn advised us too lol, but the reason is u dont want ur sites infected so changing every 2 to 3 days is recommended. there are alot more bits to get pumping we used to have a medicine cupboard in the bathroom with all the bits in now we have a whole cupboard in the living room as we have to order a minimum of 3 months supply at any one time

anna marie

 

[donnellysdogs]

Gosh, I have to have a whole 6 foot sideboard in my hallway for my spares of everything.....I have to have 6 months supplies from my hospital!!!!

 

[ams162]

ours said a minimum of 3 so went for that lol thats plenty to be going on with :lol:

 

[SophiaW]

We change Jess' infusion set every 2 days and the cartridge containing the insulin every 4 days. She has a site change every 2 days because she's using a steel cannula, if you choose the teflon type then I believe it's every three days that you must change. The reason for changing is to keep the site healthy and I have read also to help avoid scar tissue forming (I'm not sure if this is right but what I've read).

We have a cupboard which stores the sets, cartridges and all the other diabetes bits. We order 6 boxes of cartridges, 6 boxes of infusions sets, batteries, cartridge and battery caps and adhesive removal wipes from the pump company. The insulin, which comes in vials, comes on prescription from our GP. We order two vials at a time (10ml size). Test strips etc from GP too.

Filling the cartridge with insulin is fairly easy and straightforward, but sometimes bubbles can drive us nuts! But now we have the technique pretty much sorted it's not so much of a problem anymore. If you look at youtube you'll probably find some videos showing how to fill insulin pump cartridges so you get an idea of what's involved.

The bits we carry with us are: test meter, pump (obviously as that's attached to you), insulin pen containing rapid acting insulin incase the pump fails, usual hypo treatment goodies, a spare infusion set and we carry a couple of adhesive dissolvers too.

There are lots of accessories you can get for wearing your pump. Jess uses a tummietote belt but there are other types and styles. You may be happy simply wearing it with the clip on your belt.

 

[donnellysdogs]

I have a steel cannula which I personally recomend very highly. This needs changing about every 30 hours for me. Unfortunately my PCT do not allow me to order for myself, so I have to keep 6 months stock....this involves a normal 6 foot long sideboaard which is crammed full, including all the manuals, spare pens, and also everything else that goes with the pump.

I change my cartridges every 6 days, unless I run low before hand due to extra insulin usage. I disconnect for baths and showers and my massages. I time my set changes around these times and eating as well.

Pumps are good, but to be quite honest I feel that that are a lot more hard work than MDI, and my blood level;s are better, but I wonder if it is because I am having to test so much more....... I do not recognise the signs of hypers until I am way over 20 now....hypo's I have more awareness, but even though I try to keep to a pretty routine life, I do find that I have say a week of higher levels and a week of lower levels-e3ven without changing things on my pump.

I do actually take a lot more care now, and I don't know whether this is because of all my readings being recorded on the pump, or whether I just am more adult (47!!!!) about things, or whether it is a necessity to be more aware and taking more control.

It is not an easy option. 9 months on from going on to a pump, and I can honestly say that I still finding that I am having to change bolus and basal rates more frequently than I expected. Mind you, I do not know what I expected really!!!! I have been put on differing tablets etc for other things and this may well have had an effect on trying to balance my levels. I also realised there was a problem with flexilnk plus sets, that also gave me hell for 2 months, but since changing to steel rapid d ones, my readings are more stable.

I wish there was a genuine pump site that enabled person to read just what is involved. I for one was never told the full in's and out's of having a pump, and boy, I wish I had been told, and that there was a guidance to look at to see just how life changes from MDI when going on a pump. It is more involved in manay ways, but in many ways it is better, bt in many ways it has it's downfalls.

But ain't that just life????

 

[cugila]

I wish there was a genuine pump site that enabled person to read just what is involved.

Sharon.

A pump site........I posted this earlier in the thread. Loads of useful information just for pumpers.

http://www.insulin-pumpers.org.uk/

 

[donnellysdogs]

With the greatest respect Ken, a website that actually told the person the involvement on a 24hr basis that is needed with a pump, and the differences between MDI and pumping. There is a huge difference.

I certainly wished I had been more informed as to the need to altering basals, bolus, active insulin time, etc, even the mere fact of all the reports available on some of the machines. Pump websites give the details as to operating the pumps, but NOT fine tuning them as much as we need to do...Of course I am speaking for myself, who has gone on to another different drug this morning and have been struggling to get readings above 3 today.....

To be quite honest I never did the testing on MDI as I do now, and I am very lucky that my GP has no problem currently with giving me 30+ strips every 28 days. However, I never did this on MDI, and I just wish that there was a website that prospective pumpers could look at that actually told them of te need to test more, to check for airbubbles, that sets and compatibality vary for persons etc.

I wish I had known more before pumping. Dont' get me wrong I like my pump, but I don't love it.

 

[cugila]

Not a problem, just trying to be helpful. I am sure that site will be very helpful to many. It is run by pumpers with plenty of experience and mostly UK based.

A website that gives you 24 hr cover and advice for every eventuality whilst ideal is never going to happen, not unless people are prepared to pay heavily for it. That's the best I could find, although there may be some others. Our own pump Forum has loads of good advice and help, I think that and the other websites aimed at pumpers are the best you are going to get for now.

Experiences and tips are always being posted here by the Members, especially those that have been at it for some time. Every little helps.

 

[donnellysdogs]

Agreed Ken, I think this is the best site for experience and knowledge for pre pumpers, and with the input of others going on to pumps it is getting better and better.

The manuals and websites from manufacturers are very bland giving instructions, and I looked these up so much pre pump. They told facts brilliantly, but Not actually giving details on the necessitys to test your blood so much more and the necessity to change basals and bolus etc.

I was indeed very fortunate from a very bad episode of my diabetes to get a pump, but I really wish I had known the true realitys behind it.i.e for example my husband came in the bathroom tonight to give me a glass of wine in the bath whilst I was soaking in it. He went to dive for something that was in the bath... (bless him) before I ended up screaming at him that it was the blue capping to my set!!!!!!-and to leave well alone.

It is a totally different life to MDI, and although it is making a difference to my diabetic control, I wish to be quite honest that it wasn't quite so involved. It has taken me a lot of management, and I am still not balanced 100%. As said though, I believe that some of this is down to the GP giving me different drugs so often for my fibromyalgia, which again adds to the varying levels that I experince depending on my depression, fatigue and physical pain.

Life is full of ups and downs in general for everybody, and this is just something else that has to be managed to our best abilitys, but I personally wouldn't want a person on MDO to swop to a pump thiniing that it is an artificial pancreas.....it is like MDI an indicdual thing, and best managed by the person involved who has to live with it.

I am NOT anti pump, I just wish I had really known the full in's and out's of it before my changeover.

 

[cugila]

Bathtime.......too much information...... :lol:

I know what you mean, even though I myself am not a pumper I have seen and read much about what it can entail. I think it is hard and everybody is different in how they approach it and the type of detail they need to know before choosing the pump or MDI option. I know there are some very good books around as well which are probably worth purchasing and reading for anybody considering the options. Not sure but I think one was by somebody called John Walsh.......anybody care to help me out here ?? Found it.....'Pumping Insulin' by John Walsh and Ruth Roberts. Try Amazon, supposed to be very good ?

There is also this website.....INPUT again with great information including the benefits and pitfalls of pumps. http://www.input.me.uk We frequently refer people to the site.

Maybe there is somebody who has experience of this sort of thing and can put a post together about the Pro's & Con's ? We could probably make it a 'sticky' in the Insulin Pump Forum area for the benefit of all Members.........

Just a thought.

 

[SophiaW]

donnellysdogs, I think your experience with a pump may be a little different from others because of the other medications you're taking and your pump settings appear to need adjusting more often than what we've experienced.

You say that you test far more with the pump and mention 30+ strips every 28 days. Our experience with pumping compared to MDI is that there's not more testing involved than we used to do. Initially there was more testing whilst we were setting up but now it's a little less amount of daily testing as MDI. We used to test 8 times in 24 hours (that's 240 strips per month on average), now we test on average 5 times a day (before breakfast, lunch and supper, one mid-afternon before exercise and nother test before bed).

The pump checks that we do each day is very quick. Simply checking the battery is good, enough insulin for the day and we have a brief look at the tubing for bubbles. It takes no more time than that which was involved with the additional two Levemir injections each day.

I guess everyone is different and for some the pump is much better but for others maybe not so much better. They do say the pump isn't for everyone and so needs careful thought and sometimes I don't think you can answer whether or not it's right for you until you've tried it.

For us it's been the best thing and a very positive experience.

 

[jopar]

The insulin-pumpers forum is one of the best places alongside www.input.me.uk

The insulin-pumpers does have an e-mail list, where you can ask all the question you need concerning pumps..

I've been pumping for 3 years, and I've never looked back.. I had to fight for 3 years and the two above website were a great help with information and support to fight my battle!

I have never found pumping harder than MDI the beginign sorting out my basals was intensive but I cracked them pretty quickly but I had done several years researching pumps so knew where my issues lay with control on MDI (sensitivity to insulin and DP's) and knew the theory behind them, via books and talking etc with members on the insulin-pumpers mailing list..

Whether you need to change cannulars every 48 or 72 hours in the main will depend on whether you using steel (48 hours) or teflon (72 hours) some people find that they got to change sooner because they get a reaction to them being in the body..

I change my cartridge when it's empty so for me about ever 17 days, but again some find that their insulin can go off slightly causing control issues, so need to change sooner... But it doesn't seem to effect me but if the wheather really gets warm I will half fill my cartridge to cut down the time it's in use just in case!

 

[donnellysdogs]

I had some fantastic help and still do, but despite having lovely levels yesterday, today my highest reading has been 3.9. This morning I started taking duloxitene 20mg (small dose compared to what I may end up on, if I can tolerate the drug), but despite the information sheet saying they may raise blood levels (due to sucrose, sugar and talc in them) and despite treating all my lows I just haven't managed to raise them, even with eating lunch without a bolus, and tea without a bolus as well!! And I have lowered all my basals as well. Yet, yesterday all my levels were between 5.6 and 8.

2 out of the last 4 appointments my pump DSN hasn't been there for my appointments, either taking time off or on holiday without cancelling my appointment. I dearly hoping that I can tolerate this drug, and it will give me the stability for my fibro, but as it is only day one it is a case of waiting and seeing. Prior to all these different drugs being started in September I did have lovely levels very quickly. The best benefit being the elimination of my huge raising of levels 1 hour after getting up. I do agree there are great benefits, but I am hoping that I can find a better balance with different aspects of drugs asap.

I also did have a bad time with the flexilink plus sets, so this has probably blemished my outlook downward, but I do love the rapid d ones. I admit that I was lucky being able to identify the problems I was having as being my sets, and the rapid d's have been a huge stability, and I do not get horrendous high's and occlusions that was occuring with the flexilinks. Now if my levels change, they change for 24/7 no more blips of high's unless I have caused them myself. So when I get blips, it isn't just changing a few basals or one bolus, it can be all of them due I think in the changing of tablets...I hope that I am a rarity in having to do this, and am glad that it seems I am....

 

[jopar]

The flexlink plus has been withdrawn due the inserting mechanim kinking the cannular as it fired it in... I'm so glad I self insert as so far in 3 years I haven't suffered one kinked cannular at all...

the sucrose contained in the capsal wouldn't be enough to make a very large impact on blood glucose level, it would be on of the other ngredients in the similar vain as steriods!

Did you change your cannular yesterday? moving it to a different area, doesn't even have to be moved that far from where you had the previous set, an inch or so at times can make a lot of different to asorption rates, could be the differnce in the fat layers compistion or even depth making the cannular nearer/futher away from muscles!

 

[donnellysdogs]

Hi thanks for response..no set change yesterday, due one today. I lowered everything yesterday for 24/7 by 0.05. Overnight went to bed at 5.7 and woke up at 5.6 but within 1 hour again dropped to 4.7, yesterday before bath at 4pm I was 3.9, after discnnecting for an hour and a bit my levels had dropped even more.

Citliopram really dropped my levels, have had to come off that now to try this new duloxitine drug, and looks like levels are dropping even more with the duloxitine, however it is just now day 2. Have been on raid d's now for a few months, and they have not caused me any probs at all. have noticed a bit of suck back in the tubes from the pump of about 1 inch when reconnecting, so I do a reprime of about 2 units before reattaching to the set tubing.

Hubby commented last night how much moving I was doing and how many times I was crying out in pain when I moved-he counted 9 times, and my legs were going up and down again all night, which I thought had ended when I went on the ampitryptalene, but looks like this may have returned, but again still early days with small doses of the duloxitine. At least so far, I haven't had any other physical symptoms of dizziness or horrendous itching to contend with so that is a positive. Am going to lower all my rates again in a minute by a further 0.05, and see what happens later...

Thanks for advice for set changes, I will keep an eye on this too.

 

[Snodger]

everyone,

thank you so much for your really full and useful replies.

I change my cartridge when it's empty so for me about ever 17 days, but again some find that their insulin can go off slightly causing control issues, so need to change sooner... But it doesn't seem to effect me but if the wheather really gets warm I will half fill my cartridge to cut down the time it's in use just in case!

jopar, can I ask just to understand exactly what you mean, is the insulin going off a question of just having bigger 'reservoirs' of insulin on the go than you'd have with a pen, or is it a question of the pump being really close to your skin so getting warmer than it would if it was in a pen in your pocket/bag? or maybe both?

 

[sugar2]

Hi Snodger,

Some of the answers to the questions really depend on the insulin, the cartridge in question (and in my opinion anyway) who "trained you!. Jopar I believe changes teh cartridge when it runs out...and does so very sucessfully. When I had my brief pump training, I was told not to leave the cartridge for more than 6 days without changing it. They said that this was becasue you tend to wear the pump close to your body...so the insulin stays warm at all times and could go off.

Is this true? Well, looking what Jopar does, maybe not. is it a ploy by the pump manufactureres to get us to use more cartridges..possibly, who knows!? Pumping, like everything else with diabetes, seems to be "everyone is different" type of thing. The support this site has given me though is fantastic though, you get real life answers to questions, which I really appreciate.

DD, hope your levels are back on track! I suppose, the good thing about a pump is that at least you could "switch it off" rather than be fighting the basal dose that you took 12 hours ago? Take care.