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No longer pumping

J

jagger38

Well-Known Member
Messages
51
Today I came off my pump. The reason being my infusion sets keep failing, and I have had ketones all weekend. I just can't do it anymore, my diabetic hospital wanted me to try other sets, but I've had enough. Also I have lost a lot of confidence, and I spend so much time worrying, I feel its not worth it. My vibe is heavy, and uncomfortable at times, and I hate the tubing. There seems to be more cons than pros, and I need a break. Being back on mdi, I know will give me more challenges, but at least I wont have to worry about ketones, and ending up in a & e like I nearly did today. Going to go back to the clinic in a few months, but if I can cope on mdi, I might stay on it. My health is too important to mess around with.....

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Good luck, main thing is your happy and confident in whatever you choose. Did come off my pump just cause I was fed up of having it on me 24\7 and the tubing but, within a week back on the pump lol.

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Hi Jagger sorry to hear about your problems. If your sets keep failing there has to be a reason for it.
Are you using the inset 11's by any chance? If so quite a few people have reported problems with them so please do reconsider your dsn's offer to try different sets.
What's the problem with the tubing? It comes in different lengths so shouldn't cause a problem, if to much of it coil it like a water hose and pop a bit of tape around it.
Thirdly are you sure your sets have failed and your high numbers are not caused by a basal that's not right yet?
 
I was on the inset 11, I found them really stiff, and hard to' release. I've dealt with high readings before, but having ketones proves I'm not getting enough insulin. I think my body has had enough, It doesn't absorb anymore with the sets. I've heard of other jumpers having this problem. Going to have a break now, see how I feel later on.

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Please ring animas and tell them what is happening regarding the sets. If no one tells them they can't do anything about them.
If the sets are faulty you obviously wont get enough insulin so it's no wonder you feel so down. Please don't give up though. Talk to your dsn and try different sets.
 

You are doing what is right for you, your mental wellbeing and health. You tried the pump and it didn't work out. At least you gave it a good shot. It's not a failure on your part or anyone else's, so don't beat yourself up about it. xx
 
Please inform animas of your probs with those sets...even if you stay on mdi it is so important for these companies to get feedback of problems.

I got huge probs on flexlink and flexlink plus teflon ones.. (Roche) but stainless steel ones perfect. I too would have been in same boat as you.. But I told Roche there were probs with their flexlink plus's when very few people here thought there were problems with them. I was right, they were withdrawn. I do know that I can't tolerate any flexible set..

Tubes.. I have 90cm long ones from my arm to my bum.. All underneath clothes though, so never a problem and pump stays on my arm at night.

I hope you get on ok going back to mdi, I have to confess I would not have a clue what units to give myself if I had to...

I hope you've got rid of the ketones and able to relax a bit more...do report to animas and MHRA... There might genuinely be problems with these sets...


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I really sympathise. I feel that way too and I can see myself handing the pump back if I get another DKA. Right now my BG is high for no good reason, probably the infusion set is misbehaving and I will do a set change as soon as I get home. Getting DKA off these things, and never knowing if they're working or not... The reliability of delivery is orders of magnitude below MDI. So you are trading greatly improved control for a level of unreliability for delivery that we haven't had in decades. Lantus etc may have delivered unpredictable amounts at unpredictable times, but at least you knew some insulin was being delivered. Hence much lower risk of DKA. :-(
 
DD is right though, it's worth trying all the different sets. I tried the Inset 30 and it was way worse for me but I am about to try the Comfort. And if none of the Animas sets work, your DSN can get you an account with the other manufacturers because you can use other manufacturers' sets on the Animas pump body.

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With a pump readings can go very high very quickly.

It is important to be anle to figure out if its mechanical equipment or body changes..

However, as much as its good to recognise hypo's with a pump it is important to recognise higher hyper levels....

I feel really sad for people that have problems with sets as I have been there and its so frustrating...you can get other manufacturers sets.. If I knew whether my tubes (lueur lock to pump) and sets could fit your pump I would send you some to try....




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It sounds like you really need a break from the pump, I was so anti pump before I got one but have nothing but praise for it now I have one. If your quite happy to stay with MDI then why not if it works for you, tbh if id have never gotten pregnant I would still be MDI and quite happily doing so too!
 


Gosh DD just shows how much you know.?? The Vibe has the same luer connections as the Accu chek Combo

The problem for hospital pump funding is setting up an account to pay two companies.... some will but many just wont

Might be a good idea to create a pump share infusion sets section so that everyone gets an infusion set that suits them as half of successful pumping is greatly down to the type of infusion set used and easiness of inserting it.
 
I admit I'm thick what pump bits will fit other pumps.. Admitted.. Well n truly.

I do know its hard to set up 2 accounts for different suppliers, but why??


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Yes you can use other sets with the animas and animas sets with other pumps, if you want to use animas sets with Accu check you can, the only one that you need an adapter for is the Medtronic pumps to use animas sets with.
 
DanaR is the other pump you can not use other cannulas with as not luer lock fitted.
 
Thanks for all the replies, at the moment I have been left so traumatized, by being let down by the infusion sers, I don't feel safe being back on the pump. I have no confidence in trusting the pump anymore. It's scary how quickly you can be in serious trouble, when your not getting any insulin. Dka is very worrying. At the moment I am doing ok on injections, maybe I will consider returning to a Pump, but it would have to be something like an omnipod, had enough of infusion sets and tubing.

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Your bound to have lost faith in your pump after all your problems with your pump, it's not been a good experience for you at all! At least your not feeling down about MDI again and I'm sure the security of knowing your getting your insulin is keeping you going! You never know you might change your mind in a few months time or maybe years down the line and think you fancy giving it another go. I'm on the Accucheck Combo so can't comment on the Omnipod at all

I had a few days in high dependency in 2010 with DKA and must admit it was the scariest time of my life, I'd never realised how quickly things could go downhill. It definitely changes your approach to highs and the urgency to self test for ketones if your having problems or ill.
 
Hopefully when you are feeling a lot better in yourself you will reconsider trying the pump again.
The Omnipod though is an infusion set with a cartridge stuck o top of it. (Very crude description but that's all it is) So potentially you will still in theory run into the same problem.
As the pump cost well over £2000 I doubt you will be allowed to have another one for at least 4 years and most hospitals do not transfer pumps over to another person. So in effect that's £2000 of budget sitting doing nothing. (Not your fault as that was a rotten start to pumping)

Even though for very obvious reasons you are very upset do consider trying other infusion sets. The tubing was not a problem just the set. Hope you feel better soon.
 
Actually ive been pumping three and a half years, and am due an upgrade in December. I am seeing my consultant in June, so plan to discuss with him about whether to continue with the pump, or stay on mdi. As its only been a short time on mdi, I havent made any decisions yet. My dsn thinks I am taking a pump break, so I am keeping my options open at the moment.

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Ah ok didn't realise you had been on a pump so long.
Good idea though regarding the pump break, as think it will help you regain your confidence.
Have you tried the Cleo 90 infusion sets? They are ace to use and very comfy. Advanced therapeutics supply them.
 
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