Thinking of quitting pump

[MushyPeaBrain]

I have just had the worst and scariest night of my diabetic life thanks to the pump and I still don't understand what happened. Maybe some of you can shed some light as this morning I am a nervous shaking mess.

Sunday morning started fine. Had my usual brekkie of porridge etc and showered ready for set change at lunch. Sugars fine.

BG at 1pm 5.2. Did set change and seemed fine. Ate lunch of soup and piece of cake, knowing carbs of both bolus my usual amount minus enough to raise my BG to nearer 7 for going to gym later.

16.30pm BG 21 :shock: Couldn't understand this at all as even a small carb error wouldn't previously have caused such a swing. Correction bolus of 5
17.30 BG 17.7 so assumed set working and sat beating myself up about what I'd done wrong. Only thing I could find was I'd eaten 3 prawn crackers without taking insulin which was 9g. Took another 2 units correction.
19.44 BG 13.4 and still tiny amount of IOB

For the first time ever I became super anal about my dinner carbs and weighed the swede and carrot I was cooking. Gammon doesn't have any and mash was from a micro tub as carb counting easier. Felt really down that I have to be so precise now and can't just guess like I have been accurately for years.

10pm Ate dinner and felt a little nervous about carbs so gave extra, even though I had been so precise.

Midnight 28.9 :shock: :shock: :shock:

I can't remember that last time I had a BG like that. Used injection to correct so I knew insulin was in me. Felt so scared. Set alarm to go off 3am and changed set that night. Bloody hurt.

3am BG 19.3 hubby encouraged me to test new set so did further correction with pump

7am 11.7 took small correction

Woke up having no idea what went wrong or whether I could eat. So tired had to call in sick to work. Eventually ate brekkie and just checked BG 7.2

So what have I learnt during my 4 weeks on the pump? I have set a new record for high BG. I can't eat out for fear of my carbs being wrong. For 30 yrs I never had that problem. It's almost impossible to exercise at the moment because no DSN seems to have any guidelines and I'm faffing about in the dark. Anyway my BG are often too crazy to go to gym. The set going in hurts. Not every time but they dont warn you about this.The blood testing is crazy. I have basically gone from a confident diabetic to a paranoid crazy fearful person who feels more limited than ever before. I am now seriously thinking of quitting.

Please give me some advice! Am I giving up too early? Is this normal?

 

[SophiaW]

I don't have experience of pumps so can't offer a lot of advice. But have you considered trying a different type of infusion set, or placing it in a different location. Perhaps this change will give you more reliable control?

 

[Petey]

I'm not pumping yet, but have you considered changing out your insulin to a different vial? Could the vial/reservoir you're using have been exposed to extreme temps for too long and knackered the insulin? Other things to check might be: kinked tubes, hardened infusion sites, etc. Others will have considerably more experience than me though.

Another thing to consider is that horrible stress induced circle that can happen when you get freaked out by a loss of control, i.e. you get stressed about a BG blip, adrenaline pushes BG yet higher, stress increases, and so on... I know this plays a part for a lot of people.

Hope you get it sorted soon!

 

[donnellysdogs]

Hi Mushy

When levels are pretty good at 5ish, and levels raise so rapidly, I really believe that there must have been 1) Airbubbles 2) a 'suckback' in the tubing if you took the pump off whilst showering. probably or 3) a kink near the lueur connection possibly the tube being tight there.

I too have experienced exactly the same as you, but my occasions like this have all been down to the above 3 reasons.

1) I found my levels always go up 5 hours after a cartridge change, but I now do a lot of banging and priming 4 hours after a cartridge change
2) My levels had risen badly one morning,as overnight somehow (don't know how) the whole connector and lueur had come undone
3) The lueur connector had the tubing accidentally pulled really tight sideways (and no-my pump didn't warn me of an occlusion)-my levels just went high
4) I completely disconnect to have showers and baths, and Accuchek do not tell you that during this time insulin can go back up the tubing-some other websites call it 'suckback'. I also find this happens, and I can see the insulin drawn back about an inch up the tubing, and this for my pump equates to about 3 units to pump through before I reconnect it to me. Otherwise I will go without insulin for up to 8 hours whilst it gradually feeds that air out.

Please Mushy, don't go changing anything basals or bolus immediately, do your extra bolus as you have done, and please don't panic or think about quitting the pump.

I personally doubt very much if it was anything to do with your body at all. I firmly believe it would be one of the reasons above, and these problems can be resolved.....honest.

 

[MushyPeaBrain]

Thanks so much for all your replies

I am feeling calmer now as I know what caused my crazy episode - a kinked cannula. I had left the set in even after adding a new one last night and finally removed it today. The end was bent 90 degrees.

What confused me was that we were told that at first sign of high correct with pump. Then if the sugars bropped as normal the set was ok. Well mine did drop the first time but the set wasn't fine. Next time (although I hope there isn't one!) I will change the set straight away regardless.

Does anyone know why they kink? My DSN suggested I put my set in the fridge as this reduces the likelyhood of it happening. Does anyone else do this?

I waited 5 years for this pump and I refuse to let it beat me!

 

[jopar]

Hi Mushy

Start with your set change as this seems to be the point where problems started...

It sounds as though you had a set failure of some sorts (due to a further set changed started to bring the BG back under control) there could be several things that could have happened...
Did you check the cannular when you took it out to see if there was any kinking if you are using a Teflon cannular this can be very difficult to see as they are pretty flexiable..
It may be that when you inserted you hit muscle kinking the cannular slightly, if you are slender build then it might be when you experience a painful insertion this is what happening you catching the muscle underneath, you might find changing to a shorter cannular or angled cannular might make it more comfortable..

Did you remember to prime your new tubing?

Or perhaps missed a bubble? You may have thought you’ve primed them out hadn’t tightened the luner lock enough and you’ve had a bit of air seep back...

Did you change the cannular before or after your meal? Tip, if you change before a meal so that you can bolus it will show any problems up a lot quicker, check at 1,2 and 3 hours after to ensure no problems...

Another thing to consider when correcting the higher you are the more resistant you are to the insulin so you might have to up your correction factor a bit, when you hit 14mmol/l and over
It might look something like this
14mmol/l 15% increase of correction
16mmol/l 25% increase
25mmol/l 50% increase

Personally I found with the pump, which taking a dual correction approach helps to bring my BG back into range quicker... I bolus my correction (without adding for residence) then set a TBR of 120-150% dependant on what I working with.. Check after an hour to see if I need to extend the TBR.

You are in very early days with the pump indeed, and it will get better as you can your experience of the pump and revalue how different foods etc impact on your control etc.. So please don’t get too disheartened about it all...

 

[donnellysdogs]

Mushy

Ref exercise...

I have had problems since going on pump basically for walking my dogs 1 hour in the afternoons, my levels drop chronic....and as this was how I ended up with my dvla incident, I have been pretty paranoid about it. Although dog walking is not so energetic as your gym, it takes a huge effort for me to do due to my fibromyalgia.

I normally go for my drive/walk every day about 12-12.30. These are my levels that I am now using
8am 0.70
9am 0.70
10am 0.40
11am 0.30
12noon 0.25
1pm 0.25
2pm 0.45
My hourly units for the rest of the day/night range between 0.53 to 0.70, and for 1 hour in the morning up to 1.0 unit.
I also love banana and so I am nowadays having one banana sandwich as sustinance pre drive and walk.
If you know you are going to the gym every day at a set time then it would be worthwhil lowering your basals for 2 hours before you go, and covering 2 more hours.
If you go at different times or on different days I think it would be better to do a temporary basal change-on accuchek machine this covers 4 hours, and we can cancel it if necessary or even change it higher or lower whilst it is delivering less etc.

Sorry Mushy, but the pump and living with it can only be managed by you as it is you that lives with it 24/7. Your DSN's and consultants cannot be with you to know 24/7 what is happening, the majority of the management is going to be your decisions. I know you have had a horrible shock with these high's and worry about the gym and hypo's and eating out, but most DSN's I think do say to give yourself 6 months to get levels tweaked, they are not a quick fix....have pm'd you.

 

[donnellysdogs]

One final note Mushy

I too was told to do a correction bolus straightaway if levels raise....however, nowadays, first thing I do is to do the mechanical checks and then set/cannula check BEFORE doing the correction bolus, as I found the correction bolus did not work in these events, and then my pump was thinking I had that non working bolus in me. Sometimes it seems as if a little did go in on these mechanical failures, but certainly not the full correction bolus. So now before any correction bolus I do a quick check of everything mechanical. I know now as my levels have flattened out so much, that my body natrually doesn't go above 10 with anything that I eat, so the minute it goes above this then I check and change mechanics.

 

[iHs]

Hi

Not sure where exactly on yr body you are putting the inset in but if you are going above yr naval, then that will be a bit tender and cause some discomfort and might be the reason for the kinked cannula.
Ideally, try to find an alternative area that you rarely used when you were on MDI. I've had to stop using the righthand side of my tummy for a while due to raised bg levels after 1.5 days of set insertion and instead start using my backside a bit more and also top of my leg. The leg is quite good and if the set is inserted sideways doesn't seem to catch in any clothing.

I never got to try the Inset 30 but that is also another option for you to try. You could possibly insert on side of your arm using a longer tube.

You may feel that everyone gets perfection with a pump fairly quickly but that's not exactly true so don't be so hard on yourself.

 

[josie38]

Hi mushy,

please dont quit yet. Being on the pump is about trial and error and you know that if things wrong again then you know what to check first. I am sorry you went through a whole lot of worry with it.

I changed the length of my tubing as i found the longer tubing was getting kinked in the night. So went for a shorter length. I use an accu-check combo and the tubes come in lengths of 30,60 and 80. I use a 30.

I have had similar problems and it does make you paranoid. I hope everything gets better soon.

 

[donnellysdogs]

Mushy

I too have had many ups and downs whilst first on the pump, and my hubby says to me that if it wasn't for 1 particular person helping me, then I too may well have been thinking about quitting after a few weeks, but the support I got and continue to get from others has been fantastic.

Please give it a chance, to be quite honest I think the vast majority of us have had mechanical as well as or rather than body blips, and just use it as a lesson learnt.

Like IHS says in her note, we haven't all had perfect control from day 1, that's why the trainers and nurses and consultants say to give it 6 months. You also have to cope with working, and I think that can also make a difference to managing initially.