Pump start diary (Dana + dexcom)

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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.
 
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.
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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.
 
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.
 
I have the 60cm tubing too. I like the flexibility of it - not too long, not too short. The Goldilocks length :D
 
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 🙂
 
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.
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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..
 
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..
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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.
 
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.
 
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
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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.
 
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.
 
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.
 
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: TL:DR: 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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Thanks for the update @Saoirse. It's brilliant to hear that it's going so well, especially the looping - that part sounds amazing. o_O🙂
 
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.
 
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?
 
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 🙂
 
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?
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The linking screw got stuck in the pump and wouldn't budge, not even with pliers 😱
 
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.
Click to expand...
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!
 
@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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