Keep moving forward

In a couple of brief conversations of late I have been reminded that we all end up with low days (or weeks). The #GBDoc on Thursday 18th June had a question along the same lines and got me answering with how I deal with it only I seemed to put it in a way that is rather more thoughtful than my usual profanity infused gibberish (think the cat might wave walked over the keyboard while I was typing). It came as this:

"When it all gets too much sometimes looking at your feet to see where you are stepping instead of the horizon to see where you are going seems easier. Thing is, you are still heading in roughly the right direction most of the time"
That's the key I think. When it is hard, break it down into what you can actually do right now and do it the best you can. You are still making progress it just doesn't feel that way until you get the energy to look up or someone else who knows roughly how you feel points out to you that you are, actually, still heading in the right direction. The rest will often tend to itself or wait in any case.

Isn't it great to have a community that just gets it?

A pump all of my own - Go Live

The day has come and gone... sort of, and I am now the proud owner of a pump... my pump, not a loan pump from the clinic... this one is mine.. I think I shall call it Bob, until I don't.

Now that it is all my equipment I am less shy about hauling it all out the bag and having a really good look at everything that comes in the box / case. And it's a real snazzy case too (insulin pen for scale):

Continuing with the un-boxing it seems that the manufacturer SOOIL are not messing about, they have crammed almost everything I could think might be even vaguely useful into this case. Some I may use some I definitely will not but here is what it looks like all neat (without the pump... I'm not putting Bob back in the case he will get lonely!)

By my reckoning that supply around 2 weeks worth of reservoirs in the case no infusion sets though I have boxes of those from the clinic in any case. You also get a handful of batteries and by my count about 6 different pump carriers.

Hauling it all out and laying it on the table gives a better idea of what comes as standard with the DanaRS it seems. Below all laid out with some annotations below of what is what.

A - Spare Batteries

B - Solid plastic carry case

C - Leather Carry Case

D - Easy Setter (it's a Dana Thing)

E - Spare Scroll Plunger (again, Dana thing)

F - Spare battery and reservoir covers

G - Pump pouch (think this is meant to clip to a bra perhaps)

H - Neat case that had a bunch of the smaller bits in

I - Key for tightening / loosening the battery & reservoir covers

J - Another pouch though this one you wear as an over the shoulder sort of thing

K - Bob!

H - Shower pump pouch (think I'll just take it off)

I - Manuals etc

J - Yet ANOTHER pump holder, this on in a belly band type of rig

K - Micropore tape x 2

L - Mefix tape / patches (never heard of em)

M - Tegaderm patches

N - Spare reservoirs

The above doesn't include the other bag I had which approximately 30 additional reservoirs and infusion sets which have basically filled an entire drawer in my bedside table... so yeah... got loot!

The good & bad

I'm going to do this the other way round and cover off the bad, well I say bad they are more annoyances I guess.

Bad(ish)

Priming is fiddly!

I am not even joking here, there are a bunch of different steps to prime this and get it all up and running again and I think even on a good day I will be talking 10-15 minutes with some properly fiddly steps. Don't believe me, it's close as makes no difference to the DanaR which you can see for yourself here: https://www.youtube.com/watch?v=QQf0Vy_gwnM

To be fair the part where you wind the scroll in is done by the Easy Setter and it doesn't seem all that awkward. I am yet to try and do it all manually.


(EDIT after 6 months) Okay so it's not THAT bad. Once you get your technique down a set change is just over 5 minutes.

It uses proprietary infusion sets

A minor annoyance since this equipment is not something you can just go and pick up from the pharmacy if you are running short anyway but it is not using any standard connectors. That said they do have a fairly good range of cannualas and tube lengths and the default that I am using is a nice 360 degree spinning affair which is actually pretty comfy.

You can hear the scroll motor run

This is my first ever pump so I do not know if this is standard. I have been wearing the pump tucked into the top pocket of my shirt and I can occasionally hear a high pitch sound of the pump running, it is not loud but I do notice it sometimes though to be completely fair it's not bothered me once in the last week.

It's not possible to download pump data right now

Okay this is more one for the clinics and was actually one thing that nearly stopped my clinic from offering it, thinking it was possibly a little too soon. The reason for this, as best I have been able to divine, is that the phone Apps have not been CE certified yet so the pathway to connect to the pump to pull data is not officially there yet. NOTE: I say officially since this is not as big a deal as you may think and gets covered in one of the GOOD sections.

It uses some proprietary battery

The batteries or a little odd at first though I thought it highly unlikely that a pump manufacturer would go to the expense and effort of inventing their own battery. A very brief search reveals that it's a fairly standard battery with a minor mod. (see: Blog from Bionic Wookie) That said again it's largely academic since you get the replacement batteries as part of your regular supplies from SOOIL.

Good

This sucker is light!

I am not kidding, I dropped it on my kitchen scale complete with 240U of insulin in the reservoir and it maxed out at 73g. Yes I know that the Omnipod is probably lighter and maybe there are a couple of others but for a pump with the features this one has it's quite impressive.

Backlit LCD Screen

This may seem like an odd thing to put in good. "What, old fashioned LCD with no pretty colours?" yup! Why is it good, well easier to do a list:

• It uses a ton less power than colour screens
• It's lighter
• You can read it in bright sunlight (been useful the last week)
• Backlight is not so bright it disturbs your partner if you are making a correction at night

Full bluetooth connectivity

That's right, it seems to always be in discover mode when you wake it up though you have to approve any pairing requests on the pump.

IT JUST WORKS WITH OPENAPS

Yes I saved the best for last. This little pump, from the factory, will happily work with OpenAPS (AndroidAPS to be completely accurate) and does not require any funny tweaks or hacking or firmware. Fully warrantied by the manufacturer you can Loop with it. Of course this added a few other good things.

Remember when I said that it's not currently possible to download this pump for the clinic? Who cares? Once I hooked it up to AndroidAPS EVERYTHING I do ON THE PUMP gets synced back to my nightscout and my clinic can then see it in near real time. I have spent a lot of time talking to my pump educator about this and showing her all the features as well as the reports she can pull and she seemed to think it was cool and gave her everything she needed to be able to monitor and support me. Have I mentioned recently that I think my pump clinic are awesome? No? Okay my pump clinic are AWESOME!
[EDIT] A couple weeks in now and my clinic properly love how AAPS integrates the pump with NS as they can keep an eye on things and offer suggestions over email without having to get me to do an upload first. I think this means that we have managed to get most of my rates nailed down in record time

Okay so I am having to explain things and teach the educator all about this tech and how everything hangs together but you know what? I'm fine with that #WeAreNotWaiting and it seems my clinic at least is happy to support me and learn from me with this.

Finishing now I promise

I want to make a few things completely clear before I sign off:

1. I am not jumping straight in to looping as soon as I am live on a pump. This is silly an irresponsible since I think it is important that you understand all about the tech that is keeping you alive. This includes how to run it by hand when the tech fails (yes, "when"!) so it's important that you know what you are doing and even have a plan for when the pump itself fails. @grumpy_pumper did a guest blog for @RenzaS on just this subject last week(https://diabetogenic.wordpress.com/2018/07/08/wwgd-the-back-up-plan/). Most convenient timing.
2. I did a lot of investigation on AndroidAPS and made sure I fully understand what needs to work and how it all hangs together, so I know what to kick when stuff breaks!
3. I'm being completely open and honest with my clinic about my intent and what I am doing. At the same time I am making every effort I can to include them so that they can learn and understand what it is that the #WeAreNotWaiting community have achieved. It's very clear to me that we are all working towards the same ends and making "them" and "us" distinctions with our clinics helps no one and only alienates people that genuinely want to help us. They just have different restrictions to work under so bear that in mind.
4. Finally the important thing, I'm taking all the tips and leanings I can from other pumpers (not just loopers).

So there you go, that's me 8 hours into pumping and so far no major disasters. Had a near hypo before lunch now just dipped down to 11.5mmol/l (207mg/dl) following lunch, though that is not uncommon. The coming weeks will be interesting and exhausting I am sure but once I am happy I more or less know what I am doing I will start doing what many others have already done and close the loop. #WeAreNotWaiting and currently, a little as a time, neither am I!

What you don't think to ask

Okay first 24 hours of pumping (saline) are now complete and yet again I cannot the convey just how amazing my pump educator at Addenbrookes has been.
Before I even got back to the office she had already emailed me a bunch of stuff we had discussed and by that time I had also realised a whole bunch of things I forgot to ask.
Several emails to and fro and I had a load more information and had updated my GOTH Plan (GOne to Hell) to include the contact details and processes. Excellent, probably a little overboard but I like to have all the details I may need before I REALLY need them.

All things going well, having pump attached not really an issue. I tried belt clip even though no belt on my shorts which was great except the clip was digging into me (really need to lose some weight) so reverted to tucking in my pocket. This was great until I reached into my pocket to check something on the pump out of curiosity and found that I was tugging at the pipe work which was just annoying more than anything... need to think this one through.

Something that I did kind of do what jot down a few questions I wanted to ask at the clinic and then completely forgot about them (must have been something new and shiny distracting me) and only got a few answered. As it turned out the questions I had noted down to ask were more or less of no consequence as it turned out however a couple of days in I have been helped in equal measure by both the pump clinic and the #GBDoc, sometimes you just can't beat real first person experience talking.

So what are some of the questions I didn't ask at the time but have since and gotten answers for, bold is the ones I will go for:

• Where do I put the pump when I am taking clothes off and have nothing to clip the pump to? Here is what I tried and what was suggested.
• I tried putting it on the chest of drawers but it fell off when I bent over (only 60cm tube)
• Take it off (DOH!.... At the time it just did not occur to me)
• Hold it under your chin (Good idea but I suck at that trick)
• Drop it on the bed (Might have worked but short tube)
  
• Do I need to update my letter for airport security?
• Yes, clinic sent over electronic copy and will put a couple printed ones in post too.
  
• What do I do to order extra consumables?
• This seems to be clinic specific from what I have seen. At my clinic they have it centralised so that they can see who is using what (also some cost savings too apparently) but they did explain that they have found where people needed different cannula purely by seeing that patient X is ordering a lot of them.
• Educator sent over main mailbox for re-orders as well as direct email for person responsible as well as her phone number. (Sweet!)
  
• Am I okay to order extras when I do not need them to stock up for travel etc?
• Of course (Duh! Still worth checking I thought)
  

I am under no illusions that this list will grow a LOT since I am still not pumping insulin. I should say that the leaflet that the clinic gave me about what to do on the days leading up to the switch was excellent. Obviously it changes depending on the basal insulin you are taking but they covered off all different ones in use and what to do as well as providing a checklist of what you need to bring along on the day.

I may have said it before but the communication with the pump educator at the clinic has been fantastic. Any question that popped into my head I fired off an email and got a response really quickly. I did wonder if all these random questions would make sense being compiled into a leaflet but to be honest I think I have liked how I could reach out to the clinic as easily and quickly as I have been so that has been a lesson learned there too!

Next steps in order are:

• Unsupervised solo set change (tonight 😲)
• Start pumping the strong stuff (next Tuesday)

So interesting times ahead, this should be fun!

Step 1 - Practice with Saline, aka a Soft Start!

Okay day one of being hooked up to a pump and so far so good.
There was a minor bit of drama yesterday when clinic phoned me up because my pump had not arrived yet, luckily since I am running saline for the first week it's actually no major issue with me borrowing the clinic demo pump, so that's what is attached to me now.

I will admit that when I heard that they do the switchover as a 2 step process with the first week done pumping saline I was a little annoyed and impatient. Thinking "well why the hell are we doing that, it's just silly!" On further reflection I realised it's actually a rather sensible way of doing things since you can then "pretend" for the first week while you are still all good with the pens etc so there is nothing life cirtical going on in case you do run into some kind of issue with the new equipment.

The logistics issues that happened further cemented my view that this is actually a really smart was of doing this kind of thing since it gave us that degree of flexibility and I didn't get delayed or anything like that... which is awesome!

So how did we get on, well first off I went with the DanaRS, and it's a cute little pump, supposed to be one of the lightest around too!

One of the major selling points with the DanaRS is that you can run it with an App from your phone, or with AndoirdAPS as it has some open API's to manage it. Well that's what I thought but the AnyDana-A didn't want to see the pump so maybe this is the whole "waiting for CE approval" thing rearing it's ugly head. No worries, I have AndroidAPS installed to I fired that up and connected first time no issue... sweet!

So after running through the things I had learned in the videos for priming the pump, which is a faf compared to many though the AndroidAPS option trumps that, I had everything all primed and confirmed as good by my pump educator. Time to plug in and get started then.

That is where we are up to now, my new (loaner) pump happily sitting doing it's thing and I generate even more data. This is really quite the soft start and hopefully I will be all used to sleeping with this thing attached and then next week the real work starts. Let's see what happens then.

I would like to say that my pump educator Helen was absolutely fantastic and was completely open to looping and was very interested in all aspects of it. We dug through the various parts of my nightscout site and we were both impressed when all of my profile settings just got applied to the pump, super slick!

What have I done?

There is an old (tongue in cheek) saying in software engineering, and systems engineering to be honest, that the definition of an upgrade is “Take the old bugs out, put new bugs in!” It is that situation I find myself in this evening on the eve of the switch the pumping.

From diagnosis pumps seemed like the nirvana of diabetes control, even all the people I interacted with after diagnoses (non-D) seemed to know about it and it came across as the solution to all things. Naturally I immediately looked into this since learning new shit is something I seem to like. Even though these days it feels like the more I learn the more I forget. One thing I realised very quickly on my own was that all pumps were, is a more finely tuned version of what I was doing (MDI) min many ways.

I ruler is a great device for measuring something if all your care about is close enough to the nearest millimetre. A micro meter is stunningly amazing at getting to a thousandth of a mm if you care about it but there is the thing. You have to care and you have to want o do something with that ability. Having a 200mph Ferrari is great but it’s a complete waste of time if you are going to pootle down to the shops for your weekly shop once a week.

It is all about the right tool for the job and the person using them having the skills and desire to use those tools to their best effect. I think many T1’s have certainly got the desire though I wonder if the knowledge to make the most of these finely tuned F1 cars of the diabetes world is there at the start? I guess when I come out of clinic tomorrow I may have a more informed opinion on that but right now, a mere 12 hours before I am to make the switch I find that I am filled with questions and self doubt.

What they hell have I done? I have managed 9 years with no major incidents, no DKA (there were some close calls) no major hypo incidents (no official records so they NEVER happened) and yet I am changing to a completely different formula. I know how to do what I do now with the tools that I have now and I do a pretty good job of it. Why have I chosen to throw all that out the window and start from zero all over again… I must be crazy.

It seems to me that self-doubt is possibly a constant companion of us as humans, though one that carries a whole load of extra baggage as a PWD. We doubt our maths, we doubt our treatment decisions. We doubt almost every single treatment we give ourselves and then worry that we maybe didn’t record what we actually did or we recorded but didn’t do it. The anxiety in worrying if you did in fact give your basal shot and at the correct level. Did you use the correct ratio? The distraction as you monitor your sugars to see if you did do what you think you did or not? It really is exhausting.

I tell myself that is the biggest things that I am giving myself with pumping. I have that second check, I have the machinery to just do the “normal” background stuff so I don’t screw it up (AGAIN!) but then my overactive mind worries about the next thing. What if it fails?

The pen failures I have nailed, I know them all.. I’ve seen them all and can spot them fast and fix them. This pump stuff is so new I have no clue. No baseline, no indicators no nothing. How do a fail back? My various professional lives have always had a strong element of risk management. Identify the things that can fail, document and train for the really bad things and PRACTICE.

Well, these evening I feel like I well and truly screwed myself since I have no clue about the possible failures or emergencies and I will need to guess. I will need to rely on my own gut instinct… the trouble is I am naturally distrusting of my own gut instinct since I have a habit of screwing things up in interesting and spectacular ways. Where my health is concerned that leads to a degree of anxiety.

Is it simply nerves due to change for the unknown, probably. The problem is that the human mind, rational as it may be most of the time, tends to be completely irrational. So please forgive me.. I am having night before pump start jittters and hopefully tomorrow it will all go out the window and life will be all sweetness rum (or gin if that is your preference).

In any case, the future is looking at being rather interesting (I seem to recall an ancient curse along those lines) though I hope and expect with the help of the brilliant DSN’s at the clinic and the amazing friends I have in the #GBDoc I will find a way through this and settle in nicely.

For now I guess I will just try to remember not to be too hard on myself in the new world and learn all I can as fast as I can.

Thanks for reading my rambling drivel dear reader!