640g issues

donnellysdogs

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DD, you already know I'm not even a T1, never mind a pump user, so what do I know?

However, I was wondering if you had considered something like iHS suggested? Before I read that, I was thinking about a very small cross body bag, you could just either drop you pump into as you head to the loo, or wear over or under your clothing? If you wanted to try something like that, you could drop me the pump dimensions, and how long you would like the cross body strap, I could probably knock something up in 20 minutes from a fabric remnant to let you try it to see if it would be any good. It'd go in an envelope easily.

I have in my mind something like the one in link, but in a simple fabric, with no zips to bulk it up?

https://www.etsy.com/uk/listing/257365943/cross-body-bag?ref=pla_similar_listings

Thanks so much for such a kind, kind offer. I have chronic neck pain since last Sept and thats part of reason I toss n turn all night..and not being able to lie on left side etc even anything on my body twists around and genuinely I have to have something attached to my arm. Legs I wear such tight jeans 90% of the time that a leg thingy would also be out of the question.

I would love at some point to go back to doing some physical work...which again makes pump on my arm the best.

However, I am so grateful for peoples offers of help and suggestions...

Will be eternally grateful to my chap at Accuchek for helping me...

Tried on two new tops from charity shop this afternoon to go to Proclaimers concert tonight... They are skin tight.. And no way could I handle the pump sticking to waistband of trousers under them. Back to my old top(s) until I get changed over to the Combo next week.

My Accuchek man contacted me today and let me know evthing was in hand... Wonderful to have that on a weekend!

Got some amazing people full of kindness and support here and also my nurses that recognised I was inconsolable and Accuchek man too. Forever grateful to everyonexx
 

candi-girl

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so pleased you've able to swap to the combo.
i was on the 640g for a year, on and off. hated it! was a combo user before that. anyway, after a lot of fighting i was able to swap to the insight. i like it but am still on a pump break as don't think i can ever get used to wearing a pump again.
good luck with the combo, hope all works out.
 
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donnellysdogs

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so pleased you've able to swap to the combo.
i was on the 640g for a year, on and off. hated it! was a combo user before that. anyway, after a lot of fighting i was able to swap to the insight. i like it but am still on a pump break as don't think i can ever get used to wearing a pump again.
good luck with the combo, hope all works out.


Hi Candi-girl

I didn't want to go back to pump either!! Tried everything to avoid it but just couldn't balance morning levels. So had no choice.

I have tried to get used to tjis pump but even trying to save my fingers from testing with the libre still means joiking the blooming pump off me to enter the nlood readings manually... I'd rather just test than keep faffing around..twice...
The most annoying thing I think was the link tester each time as well being upside down for only testing on right hand. Annoyed the heck out of me and then having to get the pump off still to dona bolus of carbs...ggggrrrrrr. Naah, compared to Accuchek.. Doesn't come anywhere near it for me.

I am glad that I am not the only one though!! That alleviates more stress for me as again, it made me made me feel different that I found it so bad...

Thank you for posting... It means the workd to me..x
 

candi-girl

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Hi Candi-girl

I didn't want to go back to pump either!! Tried everything to avoid it but just couldn't balance morning levels. So had no choice.

I have tried to get used to tjis pump but even trying to save my fingers from testing with the libre still means joiking the blooming pump off me to enter the nlood readings manually... I'd rather just test than keep faffing around..twice...
The most annoying thing I think was the link tester each time as well being upside down for only testing on right hand. Annoyed the heck out of me and then having to get the pump off still to dona bolus of carbs...ggggrrrrrr. Naah, compared to Accuchek.. Doesn't come anywhere near it for me.

I am glad that I am not the only one though!! That alleviates more stress for me as again, it made me made me feel different that I found it so bad...

Thank you for posting... It means the workd to me..x

For me morning seems the best part of MDI for me. I am having trouble between 6pm and 10pm, but getting there !

I hated having to imput the numbers, get pump out etc... i could not get on with the meter at all. first the numbers never really agreed with how i felt, and yes the strip port is the wrong end and i just hated it! i went back to my old combo meter. there seems to be no end of button presses on the 640g. It was big, bulky and if i wore it on my waist band it would get hit almost every time i went through th door way! ended up very scratched, very cheapy plastic!!!

in a way im glad i got it as it made me realise that a pump was no longer for me. the infusion sets just dont work, tried them all, they just bleed, get sore, insulin doesnt work.

i do like the insight but even that just isn't working out too well and i am giving it to another patient in a week's time.
 
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donnellysdogs

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Went back to combo today! Brilliant!! Would have neen yesterday if Parcel Force hadn't decided to take my box of supplies back to Leicester Depot for no good reason!
Am so relieved... Trying to now convert horrible 0.025 accuracy to the better 0.01 accuracy.. Deciding whether to round up or round down. Haven't had a reading above 7.0 so far so getting better results than I expected with my guestimating the up or down converting over.
So, so much happierxx
 
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Snapsy

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@donnellysdogs I'm so happy that you've got your combo - you've been having such a horrid time, and I'm so pleased to hear how much happier you are!

Brilliant news! Onwards and upwards!

:happy::happy::happy:
 

candi-girl

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im pleased you're happier. you know what, i reckon if i went back to the combo i'd be happy too.
 
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donnellysdogs

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Got it back on my arm today and went out and nobody looked or noticeably stared at me for having to bolus (not taking that 640g lump off) and felt normal again...

Still tweaking settings but also less grumpy with self now the highs have gone..

Nurse phoned me yesterday though to make sure this was what I wanted as there is no integrated CGM with it.

Again, nurses don't have any real knowledge of the different CGMs such as Dexcom...so am going to be up against it slightly with trying to get finding for a standalone Dexcom.

Just so much better.. Got friend coming round tomorrow for afternoon tea so will see her response to not taking a lump off me if I dare try something to eat...
 
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TJR56

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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.

:)

I'm Type 1 , age 60, 58 years in and counting. No-one has ever discussed a pump with me, maybe because I seem to do OK with all the mechanics of bs testing and injections, Is it worth broaching the subject with my hospital team or will I be discounted for reasons of age, resources, funding etc etc?
 
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Snapsy

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Definitely worth an ask, @TJR56 - I had excellent HbA1c levels on MDI but remember that it's not all about the numbers - I wrote to my DSN setting out in detail exactly what my life in micromanaged-diabetes-control-land actually looked like in order to actually ACHIEVE that HbA1c. It was consideration of my resulting quality of life issues that secured my pump for me.

Before that though I did a great deal of reading - both on here and on the very helpful http://www.inputdiabetes.org.uk/

I knew that based purely on the numbers I wasn't ever going to be offered one. So I asked. And when it was then pointed out to me quite how difficult I was finding MDI, I realised I could have - and wished I had - asked a decade sooner than I did.

:)
 
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donnellysdogs

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I'm Type 1 , age 60, 58 years in and counting. No-one has ever discussed a pump with me, maybe because I seem to do OK with all the mechanics of bs testing and injections, Is it worth broaching the subject with my hospital team or will I be discounted for reasons of age, resources, funding etc etc?

My hospital apparently have 70 year + on them!!
Worth asking.. All depends on your meeting the NICE guidelines though.
 

Snapsy

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I can't find the page right now but there are also the ABCD guidelines that can be taken into account by your team. I didn't fit the NICE guidelines but these additional criteria came into play.

@noblehead or @himtoo I think posted this recently - would you mind putting the link up here, gentlemen?

Thanks!

:happy:
 
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PumpedSarah

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I'm Type 1 , age 60, 58 years in and counting. No-one has ever discussed a pump with me, maybe because I seem to do OK with all the mechanics of bs testing and injections, Is it worth broaching the subject with my hospital team or will I be discounted for reasons of age, resources, funding etc etc?
When I started there was a lady who was 70+ in our group, but she was getting marked dawn phenomenon. I'd still ask.
 

Snapsy

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Thanks! For some reason, even though I could 10 minutes ago, I can't now get to the input website - perhaps it's having a mad 5 minutes......
 

noblehead

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Thanks! For some reason, even though I could 10 minutes ago, I can't now get to the input website - perhaps it's having a mad 5 minutes......

You need to change your broadband provider ;)

The ABCD recommendations are worth reading if someone doesn't fit the NICE criteria, a good consultant will argue a case for funding if they think a patient would benefit from using a pump.
 
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AmandaD

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This is the issue Amanda - most of the set types are available in Europe with 110cm length tubes. Medtronic, in their wisdom, have decided not to supply this length of tube in the UK. All we get is 80cm. This sucks.


Oh my god that's ridiculous I didn't realise you cudn't get the longer tube length in the UK