# Pump start diary (Dana + dexcom)



## Saoirse (Jul 10, 2022)

Righty-0 so there was some interest in this, so here goes.
First thing to say is that this will be a partial and prejudiced account- it’s just my experience and your mileage may (almost certainly will) differ. I’ll share my experiences of going from mdi to pump to loop, and I’ll be as honest as possible.  welcome question, comments and advice but if pumps etc aren’t your thing, please feel free to find the ’ignore member’ function 

so:
Pump start is on Tuesday. My pump choice is a Dana which is a tubed pump, which I intend to rum with dexcom and camaps loop.  Saline start this week,  Insulin start the following week and hopefully loop the week after..

experience so far:  very quick and smooth.  Pump approval came through in weeks followed by information session (at which most people chose a t slim, which appears to be the pump choice du jour).  I got notified that insulin vials were being added to my script and have picked these up, and also got asked about when I wanted pump supplies delivered.  So far, so good.

have investigated insurance for pump.  It can be put on house insurance, for a fairly nomial cost, though there is also a specialist pump insurer - would be interested to hear of anyones experiences with this please.  

feelings:  excited, slightly terrified, really want this to work.  Have had a torrid year with diabetes and have gone from a pretty good hba1c to a fairly terrible one.  I know the pump is not the magic solution, but I confess there is a lot riding on this.  I am willing it to go well and while I am ready for sone bumps in the road,will be devastated for it not to work.   Wish me luck folks.


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## Rob Oldfield (Jul 10, 2022)

Good luck!  You're under the case of a hospital specialist?  Have they given you an idea of how they're going to support you?  If I remember right when I started I was left to get on with it, but they were very good at just being an email or phone call away.  That was over 10 years ago now, so clearly things may well have changed.

No experience with a specialist insurer for me - first time I've heard of that to be honest.


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## rebrascora (Jul 10, 2022)

Will be following your posts with interest. Best of luck with it. It sounds like you are pretty realistic in your approach/expectations.... ie that it won't be plain sailing, certainly at first but fingers crossed the benefits far outweigh any niggles and you really get along well with your pump choice.


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## Saoirse (Jul 11, 2022)

Rob Oldfield said:


> Good luck!  You're under the case of a hospital specialist?  Have they given you an idea of how they're going to support you?  If I remember right when I started I was left to get on with it, but they were very good at just being an email or phone call away.



Not sure yet. Hopefully all will become clear tomorrow!


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## SB2015 (Jul 11, 2022)

Saoirse said:


> have investigated insurance for pump. It can be put on house insurance, for a fairly nomial cost, though there is also a specialist pump insurer - would be interested to hear of anyones experiences with this please


We just put mine on the house insurance.  Like yours it was a nominal cost.
They did ask would I be taking out of the house.  I explained that I was very attached to it.

I hope your pump start goes well tomorrow.
I have experience of two different pumps now and in both cases the tech support has been excellent, with someone available 24/7.  I am sure Dana will be no different.

Looking forward to hearing how it goes.


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## helli (Jul 11, 2022)

SB2015 said:


> We just put mine on the house insurance.  Like yours it was a nominal cost.
> They did ask would I be taking out of the house.  I explained that I was very attached to it.


Mine is on the house insurance, to
I know some people are concerned generic insurers won't know what you are talking about if you have to make a claim. 
I decided the risk is low - low that I will lose or damage my pump so need to claim and low that the insurers won't pay - so went for the cheaper option rather than going for the dedicated pump insurance.


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## Inka (Jul 11, 2022)

My pump is on my contents insurance too. Don’t be freaked out by all the info at the pump start. The Dana trainer I had was extremely thorough, which, even though I’ve used a pump for many years, flustered me a bit. Actually, it’s all far less complicated than it sounds. My Dana RS has a fabulous, proper printed manual too, with things laid out step by step. Hope you get one of the velvet-y cool cases! Mine was crammed with lots of bits and pieces.

I don’t bother with the cannula inserters and do all mine by hand. It’s much quicker and I prefer it. The O sets are great, but do ask if they have samples of other sets and cannulas. I’ve got the O set and a couple of other types too. Top tip - the O set has a simultaneous double click when you press the top bit onto the cannula bit (you’ll see what I mean). The first few times I didn’t click it in properly, but it’s actually a nice, definite sound when you do.


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## helli (Jul 11, 2022)

Inka said:


> My Dana RS has a fabulous, proper printed manual too, with things laid out step by step. Hope you get one of the velvet-y cool cases! Mine was crammed with lots of bits and pieces.


I would also recommend asking if they could email you the electronic version. 
Embarrassingly, as I working with computers all the time, I am losing the ability to use contents pages and indexes: I prefer to just "search" for what I need when I haver a problem. Medtrum gave me a nice manual but I have never opened it as they also sent me the pdf which lives on my laptop, phone and tablet so I always have it with me.


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## nonethewiser (Jul 12, 2022)

Onwards & upwards, sure you will find pumping amazing.

Own pump is covered on home insurance, didn't need to list it individually.


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## SB2015 (Jul 12, 2022)

Hope that it goes well today @Saoirse 
i look forward to hearing all about it


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## Saoirse (Jul 12, 2022)

First of all thank you all for the support, you really are very kind bunch 

I went off to the clinic today bright-eyed and sleep-deprived, but ready to go.  I was met by one of the dieticians and we dove straight in.  It was a 1:1 appointment, I don't know if this is normal for pumps, but it was really great to have that kind of time with someone and be able to ask questions and go over everything. She was great. 

Pump is now set up with starting basal and bolus ratios and saline.  The interface has its quirks (main one being the 'one way' system, and needing to go around in circles if you have pressed past the icon you want) and is a bit old-school when many things are touch screen now.  This does not bother me in the least as the app can do everything and you can work from phone. The pump is quite light and I can see you could quickly get to the point of almost forgetting about it.  One slightly weird thing is that there is no clip on the device itself, you have to pop it into a carrying case of some sort to attach it too you.  I suspect I will be googling to buy a clip to stick directly on to it before the end of the day as while the pump is quite small the case is really bulky  - fine if you want to visibly clip to a belt, but I want something I can hide under clothes. 

Thanks for the advice re insurance - I will go with house.  The company have asked for a letter from the clinic and the very nice pump trainer is going to send this to me. 

Things learned from today:

1) If you are going to get a pump, beware A LOT of kit comes with it - multiple infusion sets, needles, handbooks etc.  So come prepared to carry it all away, unlike me 
2) The dietician who was taking me through everything was brilliant, but it is a lot to take in.  I should have taken the rest of the day off work to get everything home and breathe out.  
3) Very glad it is a saline start this week, I would not like to be immediately transferring across, still have pens for another week while I play with the pump, especially in the warm weather which plays havoc with levels.

Plans for the week - mirror the MDI with the pump, do several set changes to get used to it, keep a detailed record of food/insulin (I do carb count of course, but have gotten into the habit of eyeballing some things I eat regularly) as need some current accurate data to fine tune settings next week.


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## Inka (Jul 12, 2022)

The lack of clip got to me too the first week but then I realised I actually didn’t need one with the Dana. Previously I’d always used a clip and put the pump on my belt or waistband. But with the Dana, you only have to touch the pump to change sets and cannulas, so it can happily sit in a Hid-in case and belt. The phone app really does do it all. When the trainer first told me nobody used their pump, I went hhmmmm and raised an eyebrow because I was sure I was going to, having had a pump for years and years. But - he was right! I don’t touch my pump or look at it during the day at all, just my phone.

What colour did you get?


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## Saoirse (Jul 12, 2022)

Inka said:


> The lack of clip got to me too the first week but then I realised I actually didn’t need one with the Dana. Previously I’d always used a clip and put the pump on my belt or waistband. But with the Dana, you only have to touch the pump to change sets and cannulas, so it can happily sit in a Hid-in case and belt. The phone app really does do it all. When the trainer first told me nobody used their pump, I went hhmmmm and raised an eyebrow because I was sure I was going to, having had a pump for years and years. But - he was right! I don’t touch my pump or look at it during the day at all, just my phone.
> 
> What colour did you get?


Its classic black


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## SB2015 (Jul 12, 2022)

That sounds like it has all gone well, and great that you were doing it 1-1.  As you say there is a lot of stuff, and more once you have your supplies for a few months to tuck away at home.  

I stuff my pump in the side of my bra, as I need ready access to mine (my only gripe with my 780) 
for my combo which I didn’t need to get out I made a Pouch and hung it from my bra strap.  That was great as it was controlled by the handset like your Dana.

have fun getting to know your pump.  Does it have a name yet?


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## Saoirse (Jul 16, 2022)

Awake treating a very tiresome hypo, so a quick update:

have done a couple of practise set changes.  If anyone is curious as to what’s involved, there’s a video of the process here: 



  (This is the slighly older version of the pumpbut  very similar). The first time I did it I wound up using several sets mainly because of the extremely fiddly cannula inserter.  @Inka you are totally right- second time I abandoned it and just inserted it myself.  The trainer did say to use it as it keeps the cannula straight but I think this will go a lot better (and with a lot less faffing and waste) without it.  Top tip: do not try set changes when already tired. I can see pumps requiring less day to day thinking than mdi  but needing to be more organised about having time to do changes when not hurried etc. 

Other than that I’ve been getting used to just having a pump attached to me.  Thanks @SB2015 for the bra tip. I am far less aware of it than I thought I would be which is great. My main issue this week is I went to work one day without taking my insulin pens and I never normally forget my insulin!  A bit of cognitive overload i think.  Other jobs this weekend- downloading diasend and other apps, reading all the information pack and staying covid free so I can get started on insulin next week.


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## SB2015 (Jul 16, 2022)

Saoirse said:


> Thanks @SB2015 for the bra tip


Sounds like a steady way to start on a pump, rather than jumping in at the deep end as we did for our Combos.  You are right about needing to set aside time to do set changes but they do get easier And you find out what works for you.  

For my pump pouch I ended up making one out of some very smart fabric (Margo Selby for any textile people) and also made a silver clip on a silver smithing course As the plastic ones that came with the pump kept breaking.  A very posh pouch that no one else would see.

As for forgetting your pens that does sound like brain overload.  I managed to forget my pump one morning.  I remove mine when I shower and forgot to reattach.  I was out when my OH phoned to ask if I was missing anything!!!

I look forward to hearing how you progress.


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## Inka (Jul 16, 2022)

*The trainer did say to use it as it keeps the cannula straight but I think this will go a lot better (and with a lot less faffing and waste) without it.*

My trainer acted as though I’d announced I was going to commit the crime of the century by manually inserting my cannula  He couldn’t get his head round it. But I did mine in seconds by hand while everyone else was faffing about with the inserter. The O set inserter is particularly faffy, some of the others less so, but I still don’t use them. Not only is it quicker by hand, I feel you can judge where to put it and how it’s going more easily. I’ve never used an inserter in 18 years of pumping.

I usually try to change my sets during the day. Before meals is good because then you can push through a bolus, but it doesn’t always work out that way for me so don’t feel you must change them at an exact time. As you say, it’s good to have time, feel relaxed and not rush. The first time you change the reservoir, it all seems very involved and takes time, but once you get used to it, it becomes a lot quicker.

Looking forward to you getting it up and running so you can see how the basal works for you.


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## helli (Jul 16, 2022)

Regarding timing set changes, I try to do mine in the morning. There are a few reasons for doing this
- I can remove and clean up the sticky from my last cannula in the shower. And enjoy a smooth area (belly usually for me) to clean.
- it is before breakfast. As @Inka says it is good to push through a bolus to check all is working.
- After my shower, I am usually awake enough to do it and it feels like part of my morning ablutions.
- it does not impact my working day.
- I have enough of the rest of the day to check it worked and change if necessary. I avoid night time changes in case I make a mistake and fall asleep not noticing.


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## Saoirse (Jul 17, 2022)

@SB2015 @Inka @helli thank you all for your tips and advice.  Morning set changes it is then at least to start with, and setting the alarm for a half hour earlier!  A question:  do you carry spare cannula or even pens with you?  I travel a bit in the uk and might spend eg a full day two or three hours from home. I mean cannulas seem pretty secure an’ all, but is this something you do?  I don’t mean travelling overnight, just daily stuff. Sorry if this is a daft question.


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## helli (Jul 17, 2022)

For a day, I tend to take a syringe and insulin as a backup.
The problem could be your cannula or your whole pump - pump failures are rare but they do happen and never at a convenient time.
Some people take pens but this seems a waste of insulin to me. I take spare pens for an overnight trip.


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## Inka (Jul 17, 2022)

I just take a pen with fast-acting insulin in @Saoirse For many years, I didn’t even have a basal insulin back up. Despite this very obvious tempting of fate, I never needed it. None of my pumps have broken or needed replacing.


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## SB2015 (Jul 17, 2022)

morning @Saoirse 

Cannulas do get clogged, things can go wrong.
I have a site become very painful so needed to change unexpectedly.

If I am within 1 hour from home (either walking or with a phone call for a lift) I just take JBs and test kit.  I add a small bag with 2 cannulas&  cartridges and insulin as well as a syringe so that I could draw off small boluses if I have space.  If more than one hour from home I take my pens too.

If going away I take two sets of stuff for each change over, as well as two sensors for each change.
Having had a pump fail on holiday I was glad that I had my pens and that they were in date.  
(Only once did I forget to check that the pens had some insulin in!!!!)


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## Saoirse (Jul 18, 2022)

Inka said:


> I just take a pen with fast-acting insulin in @Saoirse For many years, I didn’t even have a basal insulin back up. Despite this very obvious tempting of fate, I never needed it. None of my pumps have broken or needed replacing.


Thanks! I still have some pen-insulin and staying on prescription so I guess this makes sense. guess the downside is potential to have to throw out unused insulin.


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## Saoirse (Jul 18, 2022)

SB2015 said:


> If going away I take two sets of stuff for each change over, as well as two sensors for each change.
> Having had a pump fail on holiday I was glad that I had my pens and that they were in date.
> (Only once did I forget to check that the pens had some insulin in!!!!)


Eek. That sounds hairy.  Or not because you had back up!  Time to replace the little bag that carries all my day to day kit for something a bit bigger I think.


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## Inka (Jul 18, 2022)

Saoirse said:


> Thanks! I still have some pen-insulin and staying on prescription so I guess this makes sense. guess the downside is potential to have to throw out unused insulin.



There’s nothing to stop you bolusing from the pen if you have some left, or want to save the insulin in your pump. Also, when you’re persistently high, it’s often best to correct with a pen. 

Also remember that people usually use less insulin on a pump, so that kind of makes up for it anyway.


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## SB2015 (Jul 19, 2022)

Saoirse said:


> Thanks! I still have some pen-insulin and staying on prescription so I guess this makes sense. guess the downside is potential to have to throw out unused insulin.


You are likely to end up wasting background insulin if you are away and need to take your background pen, as you pump is unlikely to go wrong, but you need to be prepared. (only one breakage whilst away in 12 years of pumping.  To save wasting quick acting you can take syringes and draw off boluses from a vial as needed.  

Having had a very unusual broken pump whilst away I was glad to have both pens available to fallback on, and not having to bother about using syringes.  When I go away I date the pens showing when to discard it, and just need to remember to check that they are in date when I next go away.  

Best to keep yourself safe and accept the wastage in my opinion.  I have just discarded a couple of asthma inhalers as they are now out of date.  I rarely have an attack but if triggered I need my inhaler.  In my mind that is not a waste, just keeping me safe.


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## helli (Jul 19, 2022)

My approach is to take pens if out overnight but just syringes if out for a few hours. If I take pens, I return the cartridge to the fridge when I return (making a note of total number of days out of fridge). That way, I have less pen cartridge wastage than if I always carried them with me.


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## Saoirse (Jul 19, 2022)

SB2015 said:


> You are likely to end up wasting background insulin if you are away and need to take your background pen, as you pump is unlikely to go wrong, but you need to be prepared. (only one breakage whilst away in 12 years of pumping.  To save wasting quick acting you can take syringes and draw off boluses from a vial as needed.
> 
> Having had a very unusual broken pump whilst away I was glad to have both pens available to fallback on, and not having to bother about using syringes.  When I go away I date the pens showing when to discard it, and just need to remember to check that they are in date when I next go away.
> 
> Best to keep yourself safe and accept the wastage in my opinion.  I have just discarded a couple of asthma inhalers as they are now out of date.  I rarely have an attack but if triggered I need my inhaler.  In my mind that is not a waste, just keeping me safe.


Yes I agree the priority is being safe.  The dietitian today gave exactly the same advice re travel, pens and also bringing set changes as mentioned above.  [just in case it came across that way I really wasn’t criticising when I mentioned ’waste’ rather noting that it was likely some unused insulin would be binned]


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## SB2015 (Jul 19, 2022)

Saoirse said:


> Yes I agree the priority is being safe.  The dietitian today gave exactly the same advice re travel, pens and also bringing set changes as mentioned above.  [just in case it came across that way I really wasn’t criticising when I mentioned ’waste’ rather noting that it was likely some unused insulin would be binned]


It did not come across as any criticism at all the mention of waste.  It is somethings that concerns a lot of us, but we can only do our best to minimise this.  It bothers me all the packaging that comes with the pump ‘stuff’ but that is how it is.

So glad the dietitian was on the same message too.  Our spares and stuff is a lot to carry around, and I have some very smart small shoulder bags which never get used now, unless I persuade OH to carry the JBs and bag with cannulas etc.

Just a new ‘normal‘ for each of us.  I look forward to reading more of your progress.  Are you using insulin now instead of saline?  I have lost track of time.


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## Saoirse (Jul 20, 2022)

Insulin start update: 
Am up and running on insulin since yesterday.  last week I hypoed overnight twice, one of those being a double hypo and a good days TIR was 40%. My time in range for the last 24 hours is currently 89% with less insulin that I normally take, and even though some of than is residual levemir I am still quite stunned.  

The pump setup itself took about an hour and a half. We did a quick review of the past week and how it had gone.  My poor trainer was quietly appalled that I’d not used the inserter and gave me a gentle ticking off (paging @Inka).  In fairness when we did the insulin set up, it was still fiddly but not rage-inducing, so I’ll stick with it for now.  Have to say that all the homework did pay off, having the ttd for each day and all the apps already downloaded, diasend set up etc did make everything go smoothly.  I got a call last  night and this morning to check in on how I am doing and we’ll speak again tomorrow. I am currently running open loop. 

Thoughts  for the newly pumping 
having had a saline start is something I really value, it gave a chance to get used to everything knowing that a mistake was not going to do anything bad.  Am far more confidenot that I would be otherwise I think 

my trainer suggests leaving the old set in until the new one is up and running, which means if the new one has a problem you can hook back up to the old one while you sort it out, I though that was a nifty idea.  

Put your basal pens in a drawer, so as not to absent-mindely inject  ( no I didn’t do it, but moving from mdi to pump is breaking habits and I can easily see how it could happen)

It’s been a weird 24 hours and I’ve cried more in that time than I did at diagnosis (but maybe that was the heat).  Thanks to all for your comments and support. I’ll update in a few days when it’s all settled down a bit.


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## Inka (Jul 20, 2022)

Ha ha!  A ticking off, eh? Join the rebels Interestingly, my first 6 or so pumps (they only lasted 2 years each) didn’t even have inserters.

When I swapped to a pump, my insulin reduced by 25% and now when I have a pump break and use pens I have to increase my insulin. It’s interesting to see, isn’t it? 

Sorry to hear you hypo’d. Did you manage to sort your basal to avoid that? My overnight rates vary a lot from the beginning of the night to the end. Don’t be afraid to drop your basal right down for an hour or two or more if you need it. One hour of the night, I have zero insulin, and very low amounts for a couple of other hours. 

You’ll get more confident fairly quickly. It’s very normal for everything to seem a bit overwhelming the first couple of weeks or so. All the pump chores will become second nature and much, much quicker.


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## nonethewiser (Jul 21, 2022)

That brings back memories, so strange not injecting but most importantly not doing basal jab on evening, it's good feeling mind so well done so far your doing really well.


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## SB2015 (Jul 21, 2022)

That is all sounding good, and great that you have such a good team around you supporting you through the change over.  It is reassuring to know that you do a download of data and then just talk it through, and get advice on changes.

The tearfulness is no surprise.  It is a massive change, but you are already seeing a difference in TIR.  I like the idea of pens tucked away somewhere to avoid old habits creeping in.

The change of basal rates through the night that was such a big help.  It took some time to remember that if I want lower basal at 4:00 am I need to change the basal rate at 3:00 with the time lag in the action of our insulin And as @Inka says this could be even down to 0 units.  

There will seem a lot to do at present, but this will all become part of your new routines.


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## Saoirse (Jul 23, 2022)

Looping update

I have been running HCL since thursday, rather sooner  than I expected.  The first 48 hours or so my numbers looked good so my dietictian gave me the option of waiting a few days or going for it, and I opted for the later, which was a simple as toggling a button on the app into auto mode.  I have four different basal throughout the day and these still need a bit of tweaking, but so far, apart from a kerfuffle yesterday with the pump itself, everything has (touch wood) gone smoothly.  I was expecting lots of basal testing, but this hasn't proved necessary.  The mere fact you can adjust basal on an hourly basis throughout the day is amazing and transformative.  I don't hypo anymore on arrival at home after work which was a had been a frequent occurrence, i woke up today after a hypo-free night on a lovely straight-line 4.9.  Miraculous. Not having alarms going off constantly (high and low) is so so nice.

More than the numbers though ,my entire body feels lighter.  I knew diabetes was taking up a lot of my mental bandwidth, but I had no idea how much.

Thoughts: 
I was initially a bit resistant to having a pump.  The idea of something attached to you all the time was not one I embraced;   I barely notice it.  Equally, being something of a control freak, I was not that mad about the idea of a piece of software taking over and running my BGLs for me.  How could I trust it?   Very easily, it turns out .

Pump kefuffle on friday needed a quick trip to clinic to sort it out, where brilliant trainer got me back on track.  An early reminder that its not all smooth sailing and things do go wrong.

I woke up with a start at 5am yesterday panicking that I had not taken any basal. Took a moment to realise


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## Pumper_Sue (Jul 23, 2022)

Saoirse said:


> A question: do you carry spare cannula or even pens with you? I travel a bit in the uk and might spend eg a full day two or three hours from home. I mean cannulas seem pretty secure an’ all, but is this something you do? I don’t mean travelling overnight, just daily stuff. Sorry if this is a daft question.


I was well and truly caught out due to not taking any spares with me last week. Went to town for a dental apt and cannula came off by the time I got home blood sugars were 20+  and it took all afternoon to get my numbers down again.

Moral of the story take a spare cannula or back up syringe.


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## SB2015 (Jul 23, 2022)

Sounds like things are going well with some odd glitches on the way.

It takes a bit of getting used to but like you once looping I found I needed to think a lot less about my Diabetes.  That was the biggest benefit from my point of view.  I have got caught out a couple of times as I became a bit complacent and forgot that things do still go awry at times and we still need to have everything with us.


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## Bloden (Aug 2, 2022)

Wow, it sounds like you've hit the ground running. I'm really pleased for you @Saoirse. 

I've had one meltdown since starting on the Omnipod, but was expecting it really cos switching to a pump is a big change. I've been surprised by how fantastic it feels not to have to inject. I'm not even aware of the cannula. I'll admit, I'm jealous that your basal is already pretty much sorted. I can see it's going to take me a while to get on top of things, but my diabetes has never been straightforward. As far as I'm concerned, pumping rocks!


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## trophywench (Aug 2, 2022)

Inka said:


> I just take a pen with fast-acting insulin in @Saoirse For many years, I didn’t even have a basal insulin back up. Despite this very obvious tempting of fate, I never needed it. None of my pumps have broken or needed replacing.


You're tempting fate now .......


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## Inka (Aug 2, 2022)

trophywench said:


> You're tempting fate now .......



But now I have some basal insulin in the fridge so fate probably won’t be arsed to intervene


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## SB2015 (Aug 2, 2022)

Bloden said:


> Wow, it sounds like you've hit the ground running. I'm really pleased for you @Saoirse.
> 
> I've had one meltdown since starting on the Omnipod, but was expecting it really cos switching to a pump is a big change. I've been surprised by how fantastic it feels not to have to inject. I'm not even aware of the cannula. I'll admit, I'm jealous that your basal is already pretty much sorted. I can see it's going to take me a while to get on top of things, but my diabetes has never been straightforward. As far as I'm concerned, pumping rocks!


I had plenty of meltdowns when I first switched to a pump, and a few more when I went over to closed loop.  Give yourself time to adjust and also time to make adjustments that will be necessary to get it to match what you need.  A big change but worth it.  Keep in touch to let us know how you get on.


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## counsellorneil (Aug 3, 2022)

I've never had a pump and appreciate reading through this thread. I have asked if I can be put on one, though that decision is yet to be made by my consultant. I think my preference would be a tubeless one, though not sure if that will be an option. The one thing I do wonder about is sleeping with a tubed pump attached. I tend to move a bit overnight so I'd be scared the tube would get twisted or something. I generally don't wear much at night either, so would I need to wear some kind of clothing to attach the pump to? Many thanks.


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## Inka (Aug 3, 2022)

counsellorneil said:


> I've never had a pump and appreciate reading through this thread. I have asked if I can be put on one, though that decision is yet to be made by my consultant. I think my preference would be a tubeless one, though not sure if that will be an option. The one thing I do wonder about is sleeping with a tubed pump attached. I tend to move a bit overnight so I'd be scared the tube would get twisted or something. I generally don't wear much at night either, so would I need to wear some kind of clothing to attach the pump to? Many thanks.



The tube can be a variety of lengths. It doesn’t get twisted at all. I wear my pump in a Hid-in belt and I’m totally unaware of the tubing. During the day it’s under my clothes and I don’t notice it at all.

Tubey pumps allow you to move the pump around depending on what you’re wearing and doing. You can also disconnect them in seconds.


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## SB2015 (Aug 3, 2022)

My tubed pump roams free at night as I wear nothing and wouldn’t want to wear any sort of belt. My tubes are 60 cm and that allows me to turn over without a problem. On odd occasions if I turn twice in the same direction it gets wrapped round me but that is rare and I just unwind. 
If it is cold and I wear pjs I can put it in a pocket but then I roll onto it do usually just dump it beside me. No cannula issues as a result of movement, and they cope with the odd occasions when I forget to pick it up when off to the loo.


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## Inka (Aug 3, 2022)

I have the 60cm tubing too. I like the flexibility of it - not too long, not too short. The Goldilocks length


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## Saoirse (Aug 3, 2022)

Hi All, apologies for not updating sooner, I have been buried in work.  

In short, all is well and yes, pumping does indeed rock. The past weeks have not been without their frustrations.  The kerfuffle I mentioned in the last post was the pump breaking on my first set change.  I didn't realise at the time how serious it was, but essentially the reservoir got stuck in the pump and it's needed to be sent back to Korea. I had a temporary loan pump initially from the clinic, and then Dana sent me an 'official' loan pump.  Going from no pumps to three pumps in a week is not something I would recommend, nor having to set up a new pump from scratch.  In all fairness, both my trainer and Dana did offer help with this, but I didn't want to take any more of my poor dieticians time and thought I could just do it myself. Ha.   Cue full, howling, ugly-crying meltdown. Which was resolved once I realised I was trying to input the codes from pump 2 into pump 3 and _that_ was why it wouldn't (rightly) accept them.  I shelved everything for a night and came back to it the next day, finished set up, transferred over, and I'm still here, so I guess I set it up ok, but I have no desire to do that again in a hurry. I have the feeling the NR is faster acting in the pump, apparently this is just because my levels are much more in range, but has meant adjusting meal/bolus timings and I'm still finding the sweet spot with this.   

Things I love about the pump/loop: 

1) Different, responsive basal for different time of day.  Still tweaking carb ratios, mainly bringing them down for lunch and dinner.  

2) Responses to hypos/near hypos.  I can tell the pump I am taking a hypo treatment of 11g and the loop ignores those carbs and does not bolus for them.  If I'm heading low, the pump/loop responds and suspends insulin. how incredibly cool is this?

3) similarly the pump will, pump up, if I am high and attempt to bring me back to my ideal BS, which is set at 5.5

Things I am still learning. 

1) Not to jump in and correct when levels go slightly high, but to let the loop do its thing or put on boost (which is an increase of 35% per hour).  The loop will shut this off if the levels are dropping, which I need to learn to trust. My inner perfectionist-control-freak has periodic freak-outs about this. 

2) remembering to put on boost/or ease off an hour in advance when you want it to be effective.

3) set changes still bloody fiddly but getting better.  still getting used to scheduling these and having  enough time not to rush. 

This reminds me @everydayupsanddowns I saw a tweet (which I now cannot find again) saying that tslim have released their phone app in the US, so hopefully it will not be long more before it is released here.

@Bloden hope you are getting on well with your omni.  Sending you a meltdown high-five, I _totally_ get it.   It is a huge change isn't it?  I hadn't realised how much difference it would make, or the emotional impact it would have.  

I have offered to write something for my clinic about what its like to go from MDI to pump for the first time, which will likely draw on this thread.  If anyone has any sage words of wisdom for a new pumper and are happy to share please pass them on, or pm me.  

Thank you again to all who have shared their support especially @Inka, @rebrascora @SB2015 @everydayupsanddowns @helli and @Bloden.  It's been lovely to have you with me


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## Saoirse (Aug 3, 2022)

counsellorneil said:


> I've never had a pump and appreciate reading through this thread. I have asked if I can be put on one, though that decision is yet to be made by my consultant. I think my preference would be a tubeless one, though not sure if that will be an option. The one thing I do wonder about is sleeping with a tubed pump attached. I tend to move a bit overnight so I'd be scared the tube would get twisted or something. I generally don't wear much at night either, so would I need to wear some kind of clothing to attach the pump to? Many thanks.


I would have chosen a tubeless pump if it had been available, so I understand.  I find sleeping with my tubed pump is absolutely fine and it was something I had worried about.  Either way, I think having a pump is actually quite hard to imagine if you've never had one, but once you have it, you figure out a way to make it work with your life, if that makes sense..


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## SB2015 (Aug 3, 2022)

Saoirse said:


> I would have chosen a tubeless pump if it had been available, so I understand.  I find sleeping with my tubed pump is absolutely fine and it was something I had worried about.  Either way, I think having a pump is actually quite hard to imagine if you've never had one, but once you have it, you figure out a way to make it work with your life, if that makes sense..


All sounding like you are getting into the swing of things, in spite of an early pump failure.  Having put your basal rates ratios into three pumps in such a short time you are now officially and expert.  Well done for steeping away from it when you were getting frustrated with it, and returning the next day refreshed.  It is a lot to get us3d to but I suspect you will never want to go back now.

keep the info coming.  This will be invaluable to others.


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## Bloden (Aug 4, 2022)

Great thread @Saoirse - really informative. 
I'm not surprised you had a meltdown - that was an advanced pumping situation, to say the least!

Some random thoughts on pumping:
1. My biggest concern before starting was the stress of it all (mainly because I really struggled when I was first diagnosed). A thought struck me when I was talking to my DSN, Amanda, yesterday - the importance of the team / trainer(s) helping with the pump start. Amanda really set the tone for me - she's relaxed, obviously extremely experienced, and is very encouraging and supportive. Just her attitude has been an enormous help.
2. Hypos are a bit different for me on the pump. On MDI I never needed a snack after treating a hypo, but I do now otherwise the hypo is difficult to shake off, leading to what I'm calling chain hypos. Eeek!
3. Another big difference for me is that I now expect lows after exercise and certain activities - like housework (so I guess I'd best not do any from now on) - so am learning the importance of using temporary basals. 

I agree with @SB2015 - keep the info coming @Saoirse. Maybe you could post here the piece you do for your clinic.


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## SB2015 (Aug 4, 2022)

Bloden said:


> . Another big difference for me is that I now expect lows after exercise and certain activities - like housework (so I guess I'd best not do any from now on) - so am learning the importance of using temporary basals


Hi @Bloden Those temporary basal rates are such a bonus.  It was this that gave me the additional flexibility, since the basal is a dribble of your quick acting, it will make a difference within the hour.  In MDI I found I needed to know what I was going to be doing before my morning Levemir jab Or needed additional carbs to do more active stuff.  On the pump I could just set a temporary basal rate .  Magic. 
I ended up with a list of % reductions needed for different levels of activity.  The TBR is also great when you feel I’ll. 

I remember being surprised that cleaning the house needed basal adjustments (although I  like your idea of just not doing it) 

It is good to read accounts from both of you @Bloden and @Saoirse .  I shall link people to this when they ask about starting on their pump.


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## rebrascora (Aug 4, 2022)

I agree that it is really a great thread, very insightful and I am learning lots from it even though I am not particularly interested in a pump at this time and definitely a great thread to link to for people who are considering a pump or about to get one.


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## helli (Aug 4, 2022)

I am another TBR advocate.
I have also incorporated the TBR into a couple of profiles for specific activities at set times. For example, I need to _increase_ my basal rate 30 minutes before I start climbing but as I drive to the climbing centre during rush hour, I don't want to pull over to make the change, nor do I want to make it earlier because it could lead to a hypo when driving or later as it would mean hanging around at the climbing centre (not literally) waiting for the change to take effect. So I have a "climbing profile" which I change to when I leave the house. It also takes into consideration the lower basal dose I need overnight and follows my standard profile the next morning. I have until 5pm the next day to remember to change back again to standard.


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## Saoirse (Aug 28, 2022)

One month in:

Just over a month of pumping, I thought I would give an update of the good and bad of experience so far.  

To start with, to correct some of my own misunderstandings above.  While the pump is set up with different basal for different times of day these are very much back up for when the pump is out of the camaps loop.  When it is in loop, the pump delivered extended boluses at about 12 minute intervals based on the readings from the cgm, how much insulin is on board and what it is has learned about you/insulin needs previously.  So there is quite a sophisticated algorithm doing some heavy lifting in the background.  What is entered right at the beginning is carb ratios for each hour of the day, weight and TDD.  The camaps loop then uses this as a starting point and learns from there.  So there is no basal testing, the loop teaches itself more or less what is needed. You can set a personal glucose target, and the loop then aims to keep you there or thereabouts  (so a lower target means it is more assertive with bolusing), and it will also shut off insulin if the cgm predicts you are heading low.  Rather than use temporary basal there is a boost function and similarly 'ease off' which increase/decrease the background by about 30% for the time you set them for. 

The good:
Most of the time the loop works exceptionally well - TIR in 80s is pretty much expected now, sometimes in 90s, every now and again 100% on a day the diabetes gods are feeling particularly benevolent,  Estimated hba1c mid 40s.  After the past year, this is miraculous.

Being able to bolus for meals without injecting is a joy - I can bolus while standing in the queue for lunch, and by time time I'm sitting down, the timings work out perfectly, this makes me so happy

The mental burden of T1 is significantly less.  I feel like I have actual bandwidth to spare for the rest of my life which is amazing.

The pump is small and really I hardly notice it during the day, occasionally check I haven't lost it!

Brilliant support from clinic, DSNs and dieticians

The bad (or at least less good)
I have had to return my pump after it broke on the very first set change, the autosetter which goes with the pump which broke on change number 3 also needed to be returned and I have had to delete and resintal the app after it refused to read a sensor, and then refused to 'stop sensor', so that also needed a call to dexcom (exceptionally rare, G6 is very reliable in my experience).  I think I have been particularly unlucky with the hardware especially, but it has been stressful and needed additional trips to clinic and calls etc to sort out.  I currently have a loan pump and it will be at least another 4 weeks before 'mine' is returned to me.

Set changes are a bit fiddly and probably because of the above, I am anxious that something will go wrong each time.

More, minor, hypos.  This actually doesn't bother me too much, my TiR is so much improved that it is probably inevitable and usually a single jellybaby is enough to restore levels.

Two or three long hypos where it has taken a lot of carbs to correct. 

Elephant in the room:  Camaps (the software which joins the dexcom and dana pump and makes the HCL possible) is expensive.  As I understand it the control iq on tandem does something kind of similar, but that software is included with the pump itself (but my knowledge of tandem is very little). 

From MDI to pumping:  I think of having diabetes and mdi as being like walking a tightrope while stuff gets thrown at you periodically.  You do your best to dodge, stay on the wire and have basal to catch you if you fall.  Being on a pump feels like the wire is wider and more stable and significantly less stuff is being chucked at you, but your net has gone, so if you do get 'hit' then it's a bit more serious and you really need to pay attention sharpish to eg insulin being suspended.

~so:  TLR:  if someone was wanting to take the pump back, I would fight them hard; on it's own it is very cool. If someone was coming to take the looping away, they will need to bring a small army.  For all the bumps and stress, I can't imagine not having it now. 

This is probably my last update on this thread, but if anyone has questions about this pump/loop combination, please feel free to message me.


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## Bloden (Aug 28, 2022)

Thanks for the update @Saoirse. It's brilliant to hear that it's going so well, especially the looping - that part sounds amazing.


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## SB2015 (Aug 28, 2022)

That is all sounding promising now that you have weathered the initial hardware issues @Saoirse 
So glad that you are already seeing big benefits from the closed loop system.

Like you I would  not want to be without looping now.  It has definitely taken a lot of the thinking for me in managing th basal and slap dealing with minor errors in carb counting, as it just sorts things out in the background.  As well as enjoying not having to do any basal rate tests, I love getting so much more sleep.
with any new system there are hiccoughs but there were at times with MDI and with any pumping.  

I hope your pump is back soon and that you continue to enjoy the benefits of having more time without thinking about diabetes.


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## Inka (Aug 28, 2022)

Interesting to hear all about the camaps loop @Saoirse  The people I know of who loop at my clinic use Open APS (DIY looping) so I had no idea how camaps worked.

I do think you’ve been unlucky with the hardware. I think your pump is a newer model than mine (I know our Autosetters are different) but with mine, one thing I like is the robustness so I hope your pump issue is easily solved. Do you mind me asking exactly what broke?


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## everydayupsanddowns (Aug 28, 2022)

Thanks for the update @Saoirse 

Sounds like you’ve taken to your robot pancreas like a duck to water, and your closed loop sounds like it’s working well


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## Saoirse (Aug 28, 2022)

Inka said:


> Interesting to hear all about the camaps loop @Saoirse  The people I know of who loop at my clinic use Open APS (DIY looping) so I had no idea how camaps worked.
> 
> I do think you’ve been unlucky with the hardware. I think your pump is a newer model than mine (I know our Autosetters are different) but with mine, one thing I like is the robustness so I hope your pump issue is easily solved. Do you mind me asking exactly what broke?


The linking screw got stuck in the pump and wouldn't budge, not even with pliers


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## trophywench (Aug 28, 2022)

counsellorneil said:


> I've never had a pump and appreciate reading through this thread. I have asked if I can be put on one, though that decision is yet to be made by my consultant. I think my preference would be a tubeless one, though not sure if that will be an option. The one thing I do wonder about is sleeping with a tubed pump attached. I tend to move a bit overnight so I'd be scared the tube would get twisted or something. I generally don't wear much at night either, so would I need to wear some kind of clothing to attach the pump to? Many thanks.


Noooooo! - mine roams free and yes OK sometimes I turn over and go  Ow when an angular bit digs in somewhere bony - but as that wakes me up a bit I soon move the ruddy thing.  Have to remember to pick it up when I need the loo in the middle of the night but in well over 10 years I haven't yet broken one despite sometimes forgetting it's balancing on my knee whilst actually on the loo or standing up from it, so it swings free and goes bang against the outside of the bowl or the tiled wall or a doorframe or other wall or anything else.  60cm tubing again and that's 10cm longer than previously but my lot no longer offer the 50cm, but anyway it's hellishly robust, much hardier than you might think - but like anything dangling when you happen to have a young child in your arms, you try to conceal whatever you have about your person so they don't give it a ruddy sharp tug with an iron fist or try to teeth on it, but any number have had a go with mine over the years I've had a pump (7 grandkids, 4 great GCs) (so far but youngest GC is only 11 so give it time ....)  Yes they do indeed manage to tie themselves in knots occasionally (a few times a year) but never a tight knot that has ever affected insulin delivery.  Don't need a miniature marlin spike to undo the knots!


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## Saoirse (Aug 28, 2022)

Bloden said:


> Thanks for the update @Saoirse. It's brilliant to hear that it's going so well, especially the looping - that part sounds amazing.


Thank you!  Hope your omnipod is working well for you?


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## trophywench (Aug 28, 2022)

@Saoirse - err, what's a linking screw? (is it where you attach the tubing or summat else I don't know about)


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## Saoirse (Aug 28, 2022)

trophywench said:


> @Saoirse - err, what's a linking screw? (is it where you attach the tubing or summat else I don't know about)


It's perhaps specific to the dana pump, but it's the connection between the insulin reservoir and the pump.  It's re-used each time to refill the syringe and then drives it in the pump itself.


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## Pumper_Sue (Aug 28, 2022)

Saoirse said:


> It's perhaps specific to the dana pump, but it's the connection between the insulin reservoir and the pump.  It's re-used each time to refill the syringe and then drives it in the pump itself.


So if you mislay it you stuffed?


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## Inka (Aug 28, 2022)

Pumper_Sue said:


> So if you mislay it you stuffed?



It’s pretty noticeable - a length plus blue ‘hat’ rather than a normal screw. It’s actually pretty neat and part of what makes the Dana so dinky


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## Saoirse (Aug 28, 2022)

Pumper_Sue said:


> So if you mislay it you stuffed?


well, yes, but as you can't fill the reservoir without it, that means you hang to it .  the pump comes with a spare too.


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## trophywench (Aug 29, 2022)

Thanks for explaining that, I rather think that it is specific to the Dana.  

The problem itself does remind me what happened  - to a good many people with them, including myself with my first Roche Combo pump - leading to Roche issuing a dire warning to the world.

The Combo has a detachable insulin reservoir which has the attachments to enable it to be filled directly from a 10ml vial of insulin in exactly the same way as a conventional syringe is loaded with the liquid medication you require in it.  You then remove the pointy bit at the top of it and then place a plastic thingy over the neck of and over the top of the body of the reservoir, which has the thread of a screw on the outside of this plastic bit.  The thread to screw the reservoir into, is in the pump itself.  The space in the pump also contains the piston so you have to return the piston to the bottom of the chamber where it goes, which it does for you when you stop the insulin delivery prior to removing the empty reservoir, after you instigate the 'change reservoir' sequence on the pump menu.    The trouble was, if you did not attach the tubing to the neck of the reservoir before loading it, whilst screwing it in and fiddling about attaching the tubing - insulin leaked from it down it's side(s) into the chamber that the piston sits at the bottom of.   The trouble is - the insulin dries and jams the piston rock solid!

Oopsie - guilty as charged.  But - nobody knew!

I've no idea whether they could eventually un-jam the workings or not, because nobody at my clinic ever got feedback - and Roche just replaced the pumps affected but did not issue the dire warning for several months.  Now they tell you to both attach the tubing AND load the reservoir with the pump upside down!

Over the 24 years I've used Novorapid so far I must have dribbled God knows how much of it over this that and the other in this house and over our possessions - and never ever had any permanent stain or residue from it - so how the hell could that even happen?


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## Bloden (Aug 30, 2022)

Saoirse said:


> Thank you!  Hope your omnipod is working well for you?


The Pod's great but, having read your post, I feel like I'm driving around on square wheels LOL, your technology sounds so advanced!  I'm looking forward to the rumours surrounding the Omnipod (and looping) coming true - asap. I think most of us would like to take more than just a step back from managing what sometimes/often (can't decide which) feels like a relentless condition.


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## trophywench (Aug 30, 2022)

Yes - and one of the reasons I wish I'd taken the plunge with a Tslim (as the Medtronic 780 wasn't on offer) is because of the Control IQ loop system - I may well be mentally & physically capable of operating it now but ? whether I will be when I'm next due a change.  But unless you've already got the system up and running well before you go gaga, the Carehome's unlikely to have the time and expertise to do it for you!


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## Saoirse (Sep 2, 2022)

Bloden said:


> The Pod's great but, having read your post, I feel like I'm driving around on square wheels LOL, your technology sounds so advanced!  I'm looking forward to the rumours surrounding the Omnipod (and looping) coming true - asap. I think most of us would like to take more than just a step back from managing what sometimes/often (can't decide which) feels like a relentless condition.


I’ve heard omni5+ loop has been fda approved in the US so hopefully on its way here The camaps clinical trial is ongoing but coming to an end and fingers crossed  when it reports there will be more evidence as to the value of looping and the difference it makes and It will be more available.  Having  libre widely prescribed is such a huge leap forward, hopefully looping will be the next one!  Honestly so grateful to be in a time and place where these tools and tech are possible.


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## Bloden (Sep 3, 2022)

Saoirse said:


> Honestly so grateful to be in a time and place where these tools and tech are possible.


Me too, I feel very very lucky.


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## nonethewiser (Sep 3, 2022)

Saoirse said:


> I’ve heard omni5+ loop has been fda approved in the US so hopefully on its way here The camaps clinical trial is ongoing but coming to an end and fingers crossed  when it reports there will be more evidence as to the value of looping and the difference it makes and It will be more available.  Having  libre widely prescribed is such a huge leap forward, hopefully looping will be the next one!  Honestly so grateful to be in a time and place where these tools and tech are possible.



Never good time to be diagnosed that's a fact,but your right with tech now available managing type 1 is getting easier, still pain time consuming but much better than decades before.


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