Coming off my pump

[jagger38]

I have made the difficult decision to come off my animas vibe pump. I have been pumping almost 3 years now, and while things were fine in the beginning, the last six months have been very stressful. At least once a month, I get ketones, high readings, and no idea why. My tubing isn't twisted, cant find any evidence of air bubbles, and my sites don't look infected. I am fed up with it, I have exhausted all the possibilities, and I can't keep doing this. It is causing me more anxiety and stress than I need in my life. Just this morning, woke again with readings of 15.6, and ketones. I have done a set change, and all is fine at the moment, but I never know how long it will last. I can go several weeks with no problems, at all, and fantastic reading, to suddenly out the blue, readings really high, and evidence of ketones.
I phoned my diabetic nurse at the hospital today, and she was lovely, very kind and supportive. I said I want to go back to mdi. She totally understood, and agreed. I did say I am not giving up on my pump, but I need a break from the constant worry of whether my pump is working properly. I have an appointment on the 25 November to return back to injections. Feeling quite apprehensive about going back, but feel I have been left with no choice.
Would appreciate any feedback, and if anyone else has experienced similar problems, if I had a pump without tubing, I would feel more confident about wearing it, but Animas don't do them. Hope I am making the right decision, any advice gratefully received.

 

[iHs]

Hi

Don't feel bad about what you are going to do.... high bg levels with keytones to boot are not good for anyone and not a good advert for pumps. They are hard work at times and its difficult to work out what is causing what when bg levels start to go wrong. Have you tried using another luer set made by Accu chek instead of Animas just to see if that helps? Different companies use their own designs and possibly different types of cannula.

For what its worth, if you can afford it, get yourself onto cgm and if possible use Levemir twice a day instead of Lantus or maybe try Tresiba and see how that affects you.

 

[mariposa84]

Hello! I just wanted to say I've been in a very similar situation and I'm ten days into my "pump holiday" after deciding pump was getting too much (problems with high bgs, ketones,occlusions etc. etc). Was initially very apprehensive about going back on mdi but so far there's been a marked difference in my blood sugar readings and I'm feeling much better now my readings are more stable than before. I hope things work out for you and you feel better soon. Good luck!

Sent from the Diabetes Forum App

 

[cjld999]

I don't know if you will find this of any comfort but the tubeless pump has lots of failures too in my experience so it would seem all pumps have their pros and cons to me, just in case you thought this might have been the solution!

 

[jagger38]

Thank you for your replies, interesting to know other members get frustrated by their pumps too. I thought when I got mine, it would be this wonderful device, that would allow me to have a normal life, with more freedom ,to eat when and what I wanted. I looked forward to doing away with injections, and using the latest technology to control my diabetes. While this is true, nobody really highlights the problems that do come with it, like having no background insulin, to protect you from ketones, and constant worrying that your tubing has got tangled, and you might have an air bubble. Also wearing 24 hours a day, it can be restricting, if I take it off for swimming, I know I only have an hour before it needs to go back on again. I also find it challenging finding places to put my sets, seemed to of run of areas to use. I would quite like my freedom back now. I know mdi isn't easy either, and I am prepared for some problems to begin with, but I can carb count, and with a bit of effort and hard work, hopefully I will be back on track again. Appreciate all the advice, thanks again....

 

[cjld999]

Jagger38 I totally appreciate and understand your frustrations! I too had high expectations of a pump eith the thought of it ever going wrong stupidly not even entering my mind, and true my hba1c has improved dramatically but only when it's working! Like you I sometimes feel like a pump 'holiday' but am pregnant right now so not a good time although when I've had a BM hit 20+ on on the odd occasion for no obvious reason I think it might be! Maybe the break will be just what you need right now, I really hope so and will be keeping everything crossed for you.


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[jagger38]

Hello! I just wanted to say I've been in a very similar situation and I'm ten days into my "pump holiday" after deciding pump was getting too much (problems with high bgs, ketones,occlusions etc. etc). Was initially very apprehensive about going back on mdi but so far there's been a marked difference in my blood sugar readings and I'm feeling much better now my readings are more stable than before. I hope things work out for you and you feel better soon. Good luck!

Sent from the Diabetes Forum App

Hi, just wanted to ask how easy it was to return to mdi? How do they do it? When I started on the pump, they told me to gradually reduce the amount of basal insulin I used. It seemed quite straight forward, they did all the calculations. Do you just take the battery out of your pump, and go straight back on injections again. I know my nurse will go through it with me, but I just want to be prepared. I have some spare pens, I use for emergency, but will need to order more in now. I am planning on carb counting to work out my insulin still, just hope I can do this on mdi. Glad to hear you are doing so well, thanks for any advice.

 

[mariposa84]

Jagger38

Have hopefully sent you a pm in response but as it's first one I've sent not sure if it's worked....will check back here but pls let me know if it hasn't

Sent from the Diabetes Forum App

 

[sw11bloke]

I had a medtronic for about 3 years. Had the same issues toward the end. Went back on MDI for about 2 yrs. Now im on the omnipod. its made a huge difference. Got the best readings i have ever had since having diabetes.
Sometimes our bodies and routines just need to change. I then decided to go back on the pump and bought a new medtronic. It arrived. I then changed my mind as soon as I got it. Applied for funding for the Omnipod. I surprisingly got it after a long hard fight. Last week I finally gave the Medtronic pump and the CGM away. Just go with what feels right for you.

 

[sueycl]

Sorry, but BIG moan coming up!!!! I came on D.UK tonight after a set change today left me with a b.g of 33, and feeling very ill. This has happened twice already within the last few days. Yesterday I had highs for over 10 hours, including 1 which was over 33.3mm. I've had 3 ketone readings over the last few days, which made me feel ill, this is crazy, as I've had this awful condition for nearly 40 years, and the only time I've ever had ketones that made me feel ill was at diagnosis. Guess I can't blame the pump for todays mess, as when I changed the set, I'd forgotten to take off the 'sleeve' that covers the cannula . At the last set change tonight,, the cannula was bent to 90 degrees. I was extra careful changing the set because I use the Animas Vibe, and changing the set successfully seems to be extremely hit or miss. I agree with you, the pump has just taken over my life. I suppose, after getting used to it originally, I was quite happy with it, but I've had so many problems, it can't be all me. I would like to know whether other pump sets are so 'tricky' to use.
I wondered if it's just the Vibe that is susceptible to malfunction. I've had to change loads of sets because they've failed. I was relieved to read your post, because normally, I can't find a reason for the failures, and the set failures are so very random. I've changed 3 over just a few hours, and I now suspect that the drug companies make these items to fail deliberately!?!?!? I do take care but, like you, it's just not working for me.
Why can't this device which costs thousands, tell me the insulin isn't being delivered under the skin, or isn't even going partway in. I didn't seem to have a wet patch on my skin, so I'll never know what happened :? :? I am now thinking very seriously about coming off the pump. Look forward to hearing how you get on, good luck!

 

[sw11bloke]

it may not be all you.....
Unfortunately youre so limited to where you can wear the canula and sometimes you cant see..... Perhaps you have some serious scaring under the skin in certain areas and the insulin absorption is affected by the scarring. Try wearing the pump in an area where you hardly use and see. That will soon tell you. It happened to me.

I remember the canula needle used to be so long so it definately causes scaring under the skin. With the omnipod, you can basicaly stick the patch anywhere, press a button and it self inserts by about 5mm's!

 

[jagger38]

Sorry, but BIG moan coming up!!!! I came on D.UK tonight after a set change today left me with a b.g of 33, and feeling very ill. This has happened twice already within the last few days. Yesterday I had highs for over 10 hours, including 1 which was over 33.3mm. I've had 3 ketone readings over the last few days, which made me feel ill, this is crazy, as I've had this awful condition for nearly 40 years, and the only time I've ever had ketones that made me feel ill was at diagnosis. Guess I can't blame the pump for todays mess, as when I changed the set, I'd forgotten to take off the 'sleeve' that covers the cannula . At the last set change tonight,, the cannula was bent to 90 degrees. I was extra careful changing the set because I use the Animas Vibe, and changing the set successfully seems to be extremely hit or miss. I agree with you, the pump has just taken over my life. I suppose, after getting used to it originally, I was quite happy with it, but I've had so many problems, it can't be all me. I would like to know whether other pump sets are so 'tricky' to use.
I wondered if it's just the Vibe that is susceptible to malfunction. I've had to change loads of sets because they've failed. I was relieved to read your post, because normally, I can't find a reason for the failures, and the set failures are so very random. I've changed 3 over just a few hours, and I now suspect that the drug companies make these items to fail deliberately!?!?!? I do take care but, like you, it's just not working for me.
Why can't this device which costs thousands, tell me the insulin isn't being delivered under the skin, or isn't even going partway in. I didn't seem to have a wet patch on my skin, so I'll never know what happened :? :? I am now thinking very seriously about coming off the pump. Look forward to hearing how you get on, good luck!

Hi there, Just read your post, it seems the vibe isn't this wonderful pump its made out to be. I thought it must be me, maybe I wasn't doing something wrong? I always take ages, checking for air bubbles, doing a set change, and always try to put the insets in different areas. I frequently check my tubing isn't twisted, even at night, checking to make sure I am tangle free. I seem to get a problem about once a month, thought one week had two failures. I decided if it did it again, that's was it, I was coming off it. Lo and behold, woke up to ketones last Thursday. I have become a bit of a nervous wreck now, and have lost my confidence in trusting the pump. The thing that annoys me, some days I have brilliant control, and other days, I have high readings which I can't account for. Even I don't have ketones, I am worrying why its happening, and feel my life is being overtaken by what my meter is going to tell me. I think you need to think about, are you getting the control you want, and is it worth the effort it takes, being on a pump? When I was first put on it, one of the nurses said to me, its a lot of hard work, you have to be very accurate, and always be aware that the pump can fail. I was so desperate to have one, I never really thought, just what can go wrong, and how depressing and scary it can be. I don't feel in control any more, and that's not a good thing. What I like about mdi, is no ketones, no tubing or air bubbles, and a lot less stress. I can't wait, good luck with your pump whatever you decide to do.....

 

[jagger38]

Hi

Don't feel bad about what you are going to do.... high bg levels with keytones to boot are not good for anyone and not a good advert for pumps. They are hard work at times and its difficult to work out what is causing what when bg levels start to go wrong. Have you tried using another luer set made by Accu chek instead of Animas just to see if that helps? Different companies use their own designs and possibly different types of cannula.

For what its worth, if you can afford it, get yourself onto cgm and if possible use Levemir twice a day instead of Lantus or maybe try Tresiba and see how that affects you.

Quite interested in this Tresiba insulin. I've been reading up on it, and I understand it helps with night time hypo's, which I used to have prior to the pump. How easy is it to get it, I have heard its quite expensive, and not all clinics offer it?

 

[iHs]

Hi

Don't feel bad about what you are going to do.... high bg levels with keytones to boot are not good for anyone and not a good advert for pumps. They are hard work at times and its difficult to work out what is causing what when bg levels start to go wrong. Have you tried using another luer set made by Accu chek instead of Animas just to see if that helps? Different companies use their own designs and possibly different types of cannula.

For what its worth, if you can afford it, get yourself onto cgm and if possible use Levemir twice a day instead of Lantus or maybe try Tresiba and see how that affects you.

Quite interested in this Tresiba insulin. I've been reading up on it, and I understand it helps with night time hypo's, which I used to have prior to the pump. How easy is it to get it, I have heard its quite expensive, and not all clinics offer it?

I have no idea as to whether Tresiba would keep bg levels stabilised over night so as to not go hypo. The only way to find out is to use it. It is expensive and you might need to eat some carb before bed but Tresiba is meant to have a better stabile effect on bg levels during the day so you might be able to keep the same carb ratio for all your meals or just vary them a tiny bit.

 

[sw11bloke]

I was on Tresiba before changing to the Omnipod. Tresiba gave me amazing results on MDI. You take it once every 24 hrs. Its peakless and my hypos on it were less severe than on Lantus.
Its the newest insulin and yes, is very expensive.
I was one of the first patients to go on Tresiba in the UK. If you can get it...go for it. If I ever did come off the pump, id definately go back on Tressiba.

 

[jagger38]

OH dear, don't know what to do now. Just got back from the hospital, saw my diabetic nurse. Talk about guilt trip, conversation went like this, " we are really surprised you want to come off your pump. You are one of our best success stories, I am in the top 5, for great control, and hbac results. You won't get such good control with injections, and forget about combo bolus. can't do that on injections, in case it stacks up. Christmas is going to be hard work, and you will won't be able in indulge so much. Your consultant is going to be disappointed when he hears". I went in there all determined and positive about going back to mdi, and come out totally confused, and put off. I tried to explain I had lost a lot of confidence and trust in when the pump fails, and my fear with ketones. I know it doesn't do it that often, but when it does, I just want to throw it away. Not that I would, but these people aren't diabetic, they don't know how it feels. She did give me a prescription for pens, and we have worked out my new basal and bolus rates, however I am now thinking perhaps I should just carry on. I have asked about getting an omnipod, for next December when I am due an upgrade, and they have said its possible, especially as I want a pump without tubing. I got the nurse to check my sites, and she said they all looked fine, and she showed me some other places to put my insets. They also said they would get the animas rep to come in, and give me a refresher course. WHAT DO I DO NOW, very confused, please offer advice, was planning on coming off pump tonight, decided to leave it today. Why is nothing ever simple anymore????

 

[jagger38]

Hi

Don't feel bad about what you are going to do.... high bg levels with keytones to boot are not good for anyone and not a good advert for pumps. They are hard work at times and its difficult to work out what is causing what when bg levels start to go wrong. Have you tried using another luer set made by Accu chek instead of Animas just to see if that helps? Different companies use their own designs and possibly different types of cannula.

For what its worth, if you can afford it, get yourself onto cgm and if possible use Levemir twice a day instead of Lantus or maybe try Tresiba and see how that affects you.

Quite interested in this Tresiba insulin. I've been reading up on it, and I understand it helps with night time hypo's, which I used to have prior to the pump. How easy is it to get it, I have heard its quite expensive, and not all clinics offer it?

I have no idea as to whether Tresiba would keep bg levels stabilised over night so as to not go hypo. The only way to find out is to use it. It is expensive and you might need to eat some carb before bed but Tresiba is meant to have a better stabile effect on bg levels during the day so you might be able to keep the same carb ratio for all your meals or just vary them a tiny bit.

Asked about tresiba, they don't supply it, and as its so new, would have to ask my consultant, shame because it sounds really good.

 

[iHs]

Hi

You can only but ask your consultant for it.....and explain why you want to have a rest from using a pump.

DSN had no right really to put you on a guilt trip as she is not with you during the day or night to pick up on the worry that you get when the pump plays up.... I sometimes get very high bg levels myself and it does make you worry as to why they have happened especially when the cause could be down to many things. Its all very well appearing to shine like a star because of your a1c... but there's a lot more to using a pump besides the a1c being ok.... I think good a1c's make it look good for the hospital so that further ccg funding will carry on for others.

If you decide to carry on with the pump which will please your dsn, then you could have a go at getting funding for the cgm that goes with the pump on the grounds of anxiety. Try and turn things around to your best advantage :idea: With the cgm, you'll be able to see in advance on the display window what is going right or wrong and take steps to prevent any looming disaster instead of doing what you are doing at the moment which is dealing with the crisis when it happens :wink: and at cost to your health and mental wellbeing.

Have a bit of a think

 

[pumppimp]

Hi Guys,
Sorry to hear everyones having such a rubbish time with your pumps!
One little suggestion I may help it may not help. I'm on the vibe as well and before that the 2012 and before that the d tron. I've only ever used the basic manually inserting sets, any time I tried the ones that use the insertion device they have failed or not felt comfortable. Ask to try lots of different types of sets I always have the ones that use the inserter pushed at me from reps but I've stuck to what works for me and it has for 7.5 years. Also we all get highs and lows out of nowhere from time to time, pumps can't give perfect control. Will add in more later,
good luck and don't be guilt tripped by anyone what ever is comfortable for you is what's best.
Laura

 

[Engineer88]

Ive got to be honest this last week has put a lot more focus on my diabetes with my pump now. But I can honestly say if you have the Vibe and can aford it in any way shape or form get the CGM. Dexcom has paid for itself already in this one week and Im looking to stretch wearing it over longwer if possible to make it cheaper per sensor but seriously good for anxity. Alarm if i go over 14 or under 4 and these can be altered to set you. knew after an hour last night I had pulled my set out and could sort it. Then watched levels come down nicely after. Cannot praise it enough even my family are happier as I live alone.

If you can get it funded even better!!