640g issues

[donnellysdogs]

I got hooked up to the 640g today and hate it compared to the Insight....

Hate having to wear it on waistband and not on arm. They don't do tubes long enough to wear it on my arm and then the bolus on the blood meter is **** too. Nothing like the fully functional remote control on Insight.

Have to change the reservoir every 2 days too!!! What a waste of money compared to the glass vials in the Insight..

Not a happy bunny tonight really but I guess I will just have to get used to it.

My hospital offered no choice as they are only just and just adequately trained on Medtronic pumps....

 

[Snapsy]

Awwwww @donnellysdogs - sorry to hear it's not love at first sight with your new pump - really hope it all works out well.

 

[donnellysdogs]

Definitely not love at first sight!!! Lol!! Frustrated with Medtronic Eshop too that won't work off iPad or Firefox and then finally after 4 days, still waiting for them to check me out so I can buy a belt and case for it.

Accuchek were so, so fantastic with me. Crikey Medtronic even charge £8 for a skin!! Good old Accuchek initially give you everything you need!

Gggggggrrrrrrr...... No the nurses wouldn't let me go back to last year's settings when I had to come off the pump... I ended up telling them they would kill me over night and would end up in DKA.....I had set it all up with my last settings (which they had a copy of) and could have lowered them by say 20%.... I will do a test at 3pm and if I'm high I will just switch the basal rate to mine. I've running at 10-12.0ish and correcting..... But trying not to be wound up by it.....I know they wanted me to run at 0.325 but my overnight from 4am used to be 1.15... So know I will be in the 30's if I go with their advice....

 

[Snapsy]

How did last night go, @donnellysdogs ? Hope you've had a good night's sleep and the pump isn't proving too troublesome.

 

[tim2000s]

Have to change the reservoir every 2 days too!!! What a waste of money compared to the glass vials in the Insight..

That's a load of rubbish pushed by Medtronic. I'm assuming you use the 3ml cartridges? If so, I do too, and I have no issues with insulin degradation over 6 days.

Interestingly, the studies done into insulin degradation in plastic reservoirs back in 2007 were done using Medtronic reservoirs and showed that you could use them for 7 days with no issues - http://online.liebertpub.com/doi/abs/10.1089/dia.2006.0041

As a result of this study, I tried it myself and saw no degradation so I refuse to follow the mandate from Medtronic on this one. I have sent this study to DSNs regarding this as a sales strategy from Medtronic, to make a point. They found it very "interesting".

I have a feeling that you got a great time out of Roche as you were an early adopter of the Insight and were giving them a large amount of feedback into your results with it and issues that were occurring. They benefited dramatically from your feedback in that context.

 

[donnellysdogs]

**** small reservoirs.. 180ml.

Had to leave pump roaming last night. Before it was on my arm.. Never had to nother with it... Didn't sleep a wink.. Got off about 4.50 and hubby woke me up to test at 5!! Then at 7am I was absolutely wrapped up with tubing and pump waa stuck caught up in it. Had to wake hubby up to see what on earth had happened and to devtangle me.

I really do hate this pump... Due to stomach-sometimes ai have to get to loo really urgently.. Then other times its days... But urgent times.. If I have to faff around with pump on waistband I will end up pooing my pants...literally..

Told nurse I hated it today. Unbelievable.. I asked her about when the alarm would go off for reservoir change as ut was set as reminder for two days. So would it be 48hrs from start up at 11am yestelrday as tomorrow I have a breast cancer consultation and wondered whether to do it before.. But then going to the beach for the day.. Or when I get home.. Late.. Which shouldn't do set changes before bed.. She said she didn't know when it would remind me but Let her know on Friday when I see her.

If you get an airbubble with 640g how do you prime it out?? On insite you just detached and did a tube fill but seems this 640g wants to make you go through a reservoir change or cannula fill or just randomly bolus it out??

Just so fed up with it.. Even the contour link has the writing upside down for right handed people!! I can only use my right hand for testing....

Moan, moan, moan but honestly I hate this b****y pump....

Finally got on to eshop to buy 1 of basic stuff -4 items... It still added VAT despite filling in form... And with Vat came to £102.60..

Thats crazy and it was only 1 of 4 items I would have to use for this lump of ****. No spares for washing times.

Honestly... Never been this so fed up ever with my diabetes.

Before nobody knew unless I told them cos pump was under clothes and the tubing etc.. And just took out the remote to do anything...

I couldn't go back gardening with this lump of ****.... I could do everything on remote protected with screen cover before.. Now I would just end up with mud etc all over.. Places I work etc I used to just bung my remote in my. Gardening bag and that was it.. Now I would have to undo my coats, find a tap, get my tester.. Wait ages for it...take machine off, reattach it, put coats back on... And that not good if I was hypo or desperate need to use an outdoor loo etc.

I am honestly so wound up... Its just a lump attached to me now that highligts my diabetes...already get enough stares from being a uniboobee....

Ggggrrrrr...

 

[donnellysdogs]

I was not allowed to get a CGM first before going back on pump!!!

I am fighting for diabetics to get cgms funded and thanks to @diasabulum this is going to progress and I will push my MP to raise questions in parliament and get to see him too....

Just so totally wound up....

 

[Snapsy]

I am so sorry to hear all of this and I really really hope there are alternative options available. You shouldn't have to go through all this.

I remember you were on the Insight but had trouble with the sets - is that right? Is there any chance of revisiting the Insight and trying out all the various sets (although I'm sure you've been through that before)?

Do take care. It's horrid that it's like this!

 

[donnellysdogs]

The trouble was I was so thin and muscly.... I'm still thin but due to the cancer I've now lost my muscle so a pump and sets should work... People kept saying to me.. Children are thin and can use sets.. The difference was they were not so muscly as me.....
I have contacted my old greatest help and cohort at Accuchek. Can't tell you his name though.. He has just responded to me and said he will try to help me get back on an Insight but then I'm left with no CGM to it... If my battle for CGM funding with my CCG is allowed.

I would have to have a stand alone Cgm but that wouldn't bother me... And I think would be better for extending usage that you can't get with the enlites.

Thing is though, no health professional sees you as an individual... Or the CCGs...
Its all "this is the way we've been trained" and this is what you get and how you do it..

Even when I informed nurse yesterday on training to load up the reservoir first before going in to the change reservoir menu.. I was told I was wrong and to do it her way.. I told her nicely it would time out on the pump... But no... You got to do it the way they were trained....

I'm so annoyed and frustrated...

By the way.. What sets are Insight doing now as tgey did have problems? I guess i'll have to check with my Accuchek Cohort tomorrow!!

I did love my Accuchek pumps.. And this lump on my belt just doesn't compare to it for my lifestyle needs....

 

[Snapsy]

Lump on belt, @donnellysdogs - sounds like a good term for it, with the way it's behaving!

I've only ever used the Flex Link cannulas - I think they're the 'standard' ones - well, they were the only ones we were offered at our pump start.

One of the guys in my pump gang tried the angled ones - Tenderlink, I think they're called - and reported that they would very easily come out, so he went back to using the Flex (which he didn't have a problem with - he was just wanting to try other options just to see).

I find the 6mm Link sets I use very comfy and easy and problem free. For my first ever one I used an 8mm which was agony as I'm thinner than that! Have had a couple of bruises but only due to daft site choices (up by my ribs was just a stupid idea!). But mostly I've been very happy and confident with the whole shabang.

And it sounds like confidence is what you're lacking with the belt lump you're on right now - we have to trust these bits of kit after all, so if it's not right then it's not right!

Hope you're able to cope with it while you're exploring other options - I'm sure the Accuchek contact will be able to offer some support perhaps in their direction. And it's brilliant that your CCG are being contacted thanks to your contact with the APPG for Diabetes et al - I have got everything crossed for you to get a) a pump that is right for you and b) a CGM.

Hang on in there - and I hope you have a much better night tonight.

 

[donnellysdogs]

Lump on belt, @donnellysdogs - sounds like a good term for it, with the way it's behaving!

I've only ever used the Flex Link cannulas - I think they're the 'standard' ones - well, they were the only ones we were offered at our pump start.

One of the guys in my pump gang tried the angled ones - Tenderlink, I think they're called - and reported that they would very easily come out, so he went back to using the Flex (which he didn't have a problem with - he was just wanting to try other options just to see).

I find the 6mm Link sets I use very comfy and easy and problem free. For my first ever one I used an 8mm which was agony as I'm thinner than that! Have had a couple of bruises but only due to daft site choices (up by my ribs was just a stupid idea!). But mostly I've been very happy and confident with the whole shabang.

And it sounds like confidence is what you're lacking with the belt lump you're on right now - we have to trust these bits of kit after all, so if it's not right then it's not right!

Hope you're able to cope with it while you're exploring other options - I'm sure the Accuchek contact will be able to offer some support perhaps in their direction. And it's brilliant that your CCG are being contacted thanks to your contact with the APPG for Diabetes et al - I have got everything crossed for you to get a) a pump that is right for you and b) a CGM.

Hang on in there - and I hope you have a much better night tonight.

Thank you so much...it means the world to me that others can appreciate the hassle and actually how it has absolutely worn me down...

Thank goodness that I had such a good rapport with my cohort at Accuchek...
I don't expect to get my Insight though to be honest. I know this chap will help me if he possibly can though.

I find myself increasingly thankful for the time when I first went on the Combo pump and realised there was a problem with their sets.. When other users were telling me their wasn't.. I struck up the good rapport with the Accuchek team then-despite me telling them there was a problem. They knew I was totally over the top with my accuracy etc and I lnow they do really care... Just makes me reflect back and actually be thankful that I stuck my head above the parapet then and it sort of gives me courage and trust in myself that I can carry on trying to get better treatment.. Not only for me... But for others...

I had the rapid D's as the flex ones just kinked against my muscles. And then it seemed as if the rapid d's couldn't get good compliance with my muscles either. Although barely a size 8 I have deginitely lost all muscle now and there's skin with some fat on my bones.

Although I do admit.. My set is in upper top bit iof my left cheek and I did feel it last night when tossing and turning all night.

Radiotherapy on my ribcage has crucified me... And at night it is agony.. and sleeping is rare for longer than 45 mins... Before tossing and turning. My neck is crucified from spasms still so sleeping is awkward as the pain in neck is intense and I have to move...

Still.. Got to face another night soon.. So will grit my teeth... ..smile and hope..

Thank you for taking time to answer. I do appreciate it.

 

[Snapsy]

It's fantastic that you were able to feed back the issues to Accuchek and in so doing, make a difference for the sake of other users. It would be good if Medtronic could sort some stuff out at their end with this one.

When I first started lurking here you were talking so much about pumps, and it was incredibly useful to me in my own journey to get - and then start successfully using - my pump.

And I still quote you to myself to this day, on the rare occasion that a cannula feels slightly owwy - you said once, 'if a set feels wrong, change it, because it probably is.'
Wise words!

Grit those teeth but not so much that smiling is impossible, and I hope tonight the wayward, tricksy pump with a chip on its shoulder and a deeply ingrained attitude problem stops being such a silly a**e and let's you get some sleep!

Hope the consultation goes well tomorrow, and enjoy the subsequent beach trip (resist the temptation to chuck anything* into the sea), and do report back re Accuchek.



*you know what!

 

[donnellysdogs]

You've got me in tears....️

 

[tim2000s]

Hate having to wear it on waistband and not on arm. They don't do tubes long enough to wear it on my arm and then the bolus on the blood meter is **** too. Nothing like the fully functional remote control on Insight.

What sets are you using for the Medtronic? They do similar 110cm tubing to Roche so I'm surprised you can't get something that is long enough for you to wear on your arm. Maybe worth a chat with your DSN/Medtronic to get hold of this type of set - I know they are available in Germany. I'm surprised they aren't in the UK. They usually come with the QuickSet type although you may be able to get a 110cm Sure-T too. If you treat them like Accuchek, maybe they'll be more helpful?

Have to change the reservoir every 2 days too!!! What a waste of money compared to the glass vials in the Insight..

**** small reservoirs.. 180ml

The 1.8 refillables in the 640 are larger than the pre-filled cartridges in the Insight. I suspect in terms of overall price, they aren't any more expensive. Just a bit more fiddly. I can see how that would be rather annoying.

As for the lack of remote, I can see how that would drive you mad. I got the impression you used to change things a lot from the insight remote, and I guess that is a big difference to have to deal with. As you say, pump horses for pump courses...!

 

[donnellysdogs]

Still in misery with pump...

Yes, I loved the remote when outdoors too and wrapped up in 6 layers of clothing..

I got the sure T for sets and 80cm tube which 10cms of it has to be stuck to skin.. Not loose like insight.
Have talked to my cohort at accuchek today and figuring out a way to get me back on accuchek.. If possible.. We may have a way!! Got so frustrated and upset earlier... I feel different and people stare because I've only got one boob.. And just feel even more different now with this clearly visible pump...
Although never shyed away from injecting in public and hiding in loos..this is far more noticeable.. One girl on facebook said "a pumps a good talking point"-i don't want to talk about it.... I don't want people looking at me...

 

[tim2000s]

Have you asked Medtronic about the 110cm tubes? (And you don't have to stick the extra bit down on the Sure-Ts. Just fold the sticky stuff together and cut it off with scissors.... Might make it easier for you in the meantime! )

 

[donnellysdogs]

They don't do them for 6mm sure T's. And its taking the pump off and weating it on belt all the time all the time that gets me.
This morning I had a really bad stomach and having to carry my pump to toilet from bed and hold it with a really bad stomach... Wiping bum, washing hands etc whilst trying to hold pump isn't making me happy.. It makes me cry...

 

[iHs]

DD I sometimes use Contact D steel needle 6mm with 1 10cm tube and put set in top back of arm and put a piece of Mefix tape over it to make sure I don't accidentally yank the set out. The tail part tube clip join is not stuck to me, instead I remove the adhesive and stick it to a piece of stiff plastic bag and then I can unclip ok.

You are in mourning for your remote but you get used to it. At home no problem but when out with other people, I try not to use pump in front of them if I think they might not be ok. Instead, I go to the ladies which doesn't take long and saves any embarrassment. Remember, the reason for the 640G is for cgm and hypo minimiser.

I put my Vibe in the top part of STV lycra knickers and it keeps pump fairly safe. Not sure about Medtronic pumps but the Vibe can be clipped to a waistband on the inside so it doesn't show until being used. The pump can also be clipped to the waistband behind the back so very few will notice it until they turn around but I've never known it to be common to talk to someone's back, usually its from the front.

 

[Snapsy]

@donnellysdogs keep going. It sounds so difficult and unfamiliar - hang on in there.

Am so tempted to bung my own pump into a Jiffy bag and post it to you, but as I kinda need it I'm sending you a big ol' hug instead.

 

[donnellysdogs]

Ok seen nurses, so going back to old combo pump as Insight do not do the steel sets anymore...
I can't get the blooming thing to pair up now!!
Is it because I've still got the 640g running, next to it?

Accuchek and nurses doing everything they can to get me the accessories I need quickly but until Accuchek get confirmation of my CCG number for funding I haven't got an account to talk to them about getting the two paired up. The Bluetooth just will not Bluetooth, the devices are recognised.new batteries.

I had to go to loo 6 times between 4am and 8am this morn and I wear nothing to bed, never have and never will... Carrying pump and leaving it on legs whilst trying to wipe my bum, then handling the pump to wash my hands and then having to clean out the toilet and re wash hands carrying the 640g is not a joke..
And it got wrapped around me again so I couldn't move.

I'm not in mourning for a remote... I want a pump on my arm that I never have to worry about when I go to toilet or have people staring at me and being a Uniboobee, I am already very conscious of people's stares.

Can anyone help me to get this combo paired back up? I've tried everything in the manuals, or at least I think I have. Is it because it's too close to my 640 lump of angst? Hubby took it into bedroom to blue tooth it and pair it and it still wouldn't pair? I can't see how it is conflicting Bluetooth, otherwise when they do group training sessions and start ups they would have conflict in those scenarios...

Any help appreciated.

Thank goodness for my man at Accuchek helping me through this. Spoke to him again this morning and had to update him on new address, and ask him to confirm that the old combo still has a guarantee with it etc... But thank goodness this man has always been there....