First look: Accu-chek Aviva Insight Pump

AccuChekInsight1

At a recent diabetes education day I got the chance to have a look at the new Roche Accu-chek Aviva Insight Pump, nicely demoed by Helen our local Roche rep.

I was very interested to see this pump especially as it came a very close second to the Animas Vibe we selected for Amy last June. You may be interested in my write-up from our official demo of the Roche Accu-chek Combo Pump from May 2013.

I only had a few minutes to look/play with the pump and its meter so I’ll keep this brief.

Here’s a few key points about the new pump:
1. It’s still not officially waterproof although like its predecessor it’s IPx8 rated, as is same as the Animas Vibe which is regarded as waterproof by Animas. So it’s waterproof BUT if it gets damaged by water it’s not covered under warranty. This is (still) madness and something Roche need to sort out…in my opinion.
2. It has a new meter which has a more modern feel about it.
3. The pump appears to be much smaller and like its meter looks more modern than its predecessor.
4. The reservoir only holds 200 units of insulin. I was asked by a friend if this would be a problem for us and it wouldn’t: Amy changes her infusion set on her Animas every 3 days and puts about 160 units in.
5. There’s a new device to help fill the pump reservoir which takes some of the hassle out of the process. I liked this, a lot, which is why I took a little video…see below.
6. Soon after release you will be able to get pre-filled Novorapid cartridges, which appear to only hold 160u.
7. Both the meter and the pump look so much nicer than before.
8. If you want CGM, you’ll probably have to wait for the next pump model.
9. It is due for official release to the public in June/July.

Here’s the meter and pump:
AccuChekInsight2

Here’s the meter showing its nice colour screen:
AccuChekInsight3

Here’s the reservoir filling device:
AccuChekInsight4

Here’s the reservoir filling device in action:

Further reading:
About the Insight pump
About the cartridge filling system
About the pre-filled cartridges

Getting an insulin pump – new gadget, SPIbelt

This pump is going to cost me a fortune

It’s probably my fault that this pump is going to cost me a small fortune: when discussing pumps before even Amy had decided I’d shown her a web site that many of you know – FunkyPumpers.com – which had pump belts for sale. Amy had spied the One Direction pump belt they sell with eagerness.

Being under prepared

Getting the pump so soon meant we weren’t organised enough to sort out a pump belt so last Thursday, when Amy got her pump, she had no choice but to wear a belt to clip the belt too as the pump didn’t fit in her shorts pocket.

So which belt is right then?

We looked at all the belts available on FunkyPumpers.com which was difficult as they have so many good ones. Amy liked the One Direction one but worried what would happen if she went off them.
We looked at cotton ones, plain ones, denim ones, on and on and on.
Then I saw that FunkyPumpers sold SPIbelts, a belt I’ve heard of and seen before. I knew that the principle is that they’re comfortable to wear and don’t move around much. Realising that they would fit an insulin pump inside was a breakthrough.
Unfortunately Amy wasn’t particularly sold on any of the designs FunkyPumpers sold so I headed off to Wiggle.co.uk, a cycling-centric site which is quite local to us.
After what seemed like and age we found the one for Sheldon (that’s what Amy’s pump is called), it was a pink camouflage one. It was ordered on Sunday and arrived today (Wednesday).
SPIbelts are available in waterproof

First impressions

As soon as Amy put it on she said how comfortable it was, she’s been wearing it ever since. The material feels cool and smooth so no chance of itching or getting too hot.
As with all pump belts you can wrap the excess tube up and stuff it inside the belt.
It looks cool so it will look good over clothes and feel comfortable underneath clothes.

Here it is



Getting an insulin pump – first few days’ blood glucose readings

Testing…testing…one…two…twelve

Amy would normally test her blood sugars a minimum of four times a day, often 6 and sometimes 10. For the first 24 hours of having a pump she did a minimum of 12, one every two hours.
For those of you who don’t have diabetes – or friends with – let me just say that: yes, testing hurts a bit; no, it doesn’t get easier the more you do; no, you don’t get ‘used to it’; yes, it makes your fingers sore.

It’s not all about the data

Accumulating masses of data is a by product of having type 1 diabetes. It’s hard to ignore the numbers when you’ve been testing your blood sugar, counting the carbohydrates you’re consuming, giving doses of insulin, giving correction doses of insulin, feeding yourself glucose to raise your blood sugar.
Analysing this data can help you and your DSN realise what slight changes need to be made to help achieve seemingly impossible stable blood sugars between the levels of 4mmol and 8mmol.

Amy’s blood glucose data from before the pump

Below is a graph of Amy’s blood glucose from before the pump.
Whilst it look pretty darn complicated the key things to notice are:
– the the yellow bar shows our meters ideals level of between 5mmol and 8mmol. (Amy doesn’t like hypos hence the 5mmol rather the desired 4mmol.)
– the blue line which is an average of the readings, noting that many of the readings hit 15mmol and 20mmol.
– the average is consistently above the desired zone.
Amy's BG readings before the pump

Just for information, no analysis

I haven’t analysed the following data and I won’t be making any changes but it’s interesting to see how quickly the pump is helping with BG control. Before she went on the pump she was constantly quite high and to be honest we did nothing about it as we new the pump was coming along soon. As Amy hated injections so much we rarely “corrected” any high blood glucose readings, this being a reason we really wanted a pump.
Here then are the graphs for the different days

Thursday 20th June – pump day

Friday 21st June – a day of overeating

Saturday 22nd June – a relaxing morning, a busy afternoon/evening

Sunday 23rd June – …and relax

Monday 24th June – first day back at school

The full chart

Getting an insulin pump – setting up, log books and BG monitoring

Setting the pump up

Going on a pump isn’t just a simple case of plug in and go, it involves a fair bit of work, but nothing insurmountable or problematic, just stuff which needs to be done.
Initially your DSN (diabetes specialist nurse) works out what they believe the best basal profile is for you, doing this by asking lots of questions about lifestyle & food and checking backing weeks of log book entries – that is if you’ve been good and filled in your log book, we hadn’t! So there’s my first tip: make sure you fill in your log book for a few weeks beforehand if you’re not doing it religiously already.
After deciding the profile our DSN read out the values to Amy – during our pump training day last Thursday – she input the values, which brings me nicely on to…

Does your DSN actually need to touch your pump? Ever?

I’d not really thought about this before but at the DRWF event on Saturday Lesley from INPUTDiabetes said something like “Once you’ve got your pump your DSN should never need to touch it, if they do you’ve not received enough training.”
It was a good point and on reflection neither our DSN nor our Animas pump rep has touched Amy’s pump, certainly not to input or change anything, and I’m pretty sure they’ve not touched it at all.
So that’s good then, we’ve been trained correctly.
I suppose it’s oh so easy to hand over your pump to the DSN and get them to change the settings but what do you do when you need to change anything in the future? Would you know how to do it?
In our case Amy is a whizz with things like this so she set up the pump, with me trying to look over her shoulder to make sure they settings were right.
So, for us, not only has the pump not really been touched by the DSN, nor the rep, nor the Doctor, it hasn’t really been touched much by us, the parents.

Filling in the Animas log book

As you’ve probably read I’ve been worried how much my hospital are ok with using Animas as we’re the first in paediatrics in the hospital to have an Animas pump. So it was nice to hear from the DSN who was inspecting the new log book that it was one of the best ones and she’d like us to use it, rather than continue with the Roche one we’d (rarely) been using up to now.
Each day takes up two facing sides, with the top page having columns for each hourly block and rows for readings/values: blood glucose; carb grams; BG bolus (correction doses); Carb Bolus; basal rate; basal rate change; temp basal rate; ketones; set change (tickable).
On the bottom page there’s spaces to write information about food and a big notes area to write notes and things like ‘had a very lazy day’.

 

A tiring first 48 hours

Our DSN had requested that we test Amy’s blood glucose everything two hours, put the entry into the pump and trust the pump’s suggestion. It seemed a strange request, of course we’d do that, but I guess that some people battle against it and then wonder why their levels are all over the place. I was grateful that it was only 48 hours as a twitter friend of mine, who’s son went on a pump a week ago, has been asked to do it for one week!
These tests were to happen every two hours for 48 hours, including throughout the night so Jane and I divided the shifts with me doing the 10pm, midnight and 6am shifts and Jane taking on the 2am and 4am. This minimised the tiredness levels for both of us, although not by much.
It didn’t seem too tiring initially although I got through most of Friday and Saturday relying on caffeine and much yawning. Luckily Amy managed to almost sleep through all 2am and 4am checks.
From midday Saturday, approximately 48 hours after going on the pump, Amy was taking part in a large choral concert so was without us for many hours. She coped well, still ecstatic about her pump.

Basal/pump reviews and calls from our DSN

Our DSN works Monday to Friday but called us on Saturday in her own time to check how things were going; they were going well.
She called again later that day and again on Sunday.
So far between us we’ve decided that no changes are required to the basal and that we should continue with the current settings.
We’ve got our advanced pump training tomorrow so there may be some changes made then.

Getting an insulin pump – a superb 24 hours

A busy (sinful) 24 hours

Since waking up yesterday morning, Jane, Amy and myself have had a great 24 hours, almost a day of celebration of the new pump, a day of treats and especially a day of saying ‘what the heck, just have it’. On reflection this may not have been the best policy on only day 2 of a pump, it just snowballed.
I’ll hold my hands up then and say that on the face of it today we’ve been pretty irresponsible, we’ve let our daughter got all out and eat want she wanted. I’ve made sure we ended in places where she’d say ‘ooh, can I have that?’ so we could let her.
It wasn’t meant to be like this.
A couple of weeks ago we chatted about the impending first 24 hours on the pump and said that we would be good, eating only normal food and stuff that we could easily calculate the accurate carb value for. This was especially to make the carbs/insulin matching accurate so that we knew that glucose fluctuations would be mainly down to Amy’s basal insulin, which the pump delivers every few minutes. This in turn would help our DSN (diabetes specialist nurse) make adjustments to Amy’s basal profile, something that is crucial to the pump being a success.

Early rush for clinic

Amy’s 3 monthly clinic appointment had been booked for yesterday since the last one in March, on the 15th.
That was the one where Amy first saw a pump and later had her epiphany moment and said “I want a pump”.
So our ‘time to pump’ was one clinic, or a little over 3 months. (15th March to June 20th). It could have been quicker if I hadn’t been researching pumps for so long.
Clinic was at 10am, we only just made it.
It was strange being back there the day after the time before, the only times this has happened before for Amy was when she was diagnosed and before that, when she was born. She didn’t remember the first time for some reason.
Whilst I have no experience of other clinics can I just say that I blinking love this one: everyone is part of one team, a team which encourages, helps and listens.

The dreaded hbA1c check/result

For those of you who don’t know the hbA1c is a blood check which in layman’s terms tells the Dr how ‘good’ you’ve been for the last 3 months. It’s a little more complicated than that, but that’s the gist. Many argue that hbA1c is not a good test as you can have a ‘good’ result whilst living a life of hypos and hypers, with blood sugars rollercoasting, whilst a ‘bad’ result could be achieved with very little fluctuation. Many, including me, would argue that the latter (‘bad’) is a better thing to strive for. Dave Sowerby’s article delves into the HbA1c check in more detail.
Amy was generally 7.3 but in December rocketed to 8.3, in March she was back down to 8.0.
I feared for today’s result as she’d been high on average for weeks. We’d done nothing about this as she was going on a pump and it seemed little point changing things about.
The result came in….
8.2
Phew! I was amazed it wasn’t a little higher.

First up: DSN

Our DSN and Dietician attended the first part, looking over the last 21 hours (since going live on pump) log book information. This felt strange, we were only talking about 21 hours, not the normal three months.
They were pleased with the progress made already, amazed at how well Amy looked and felt about the pump, applauded the BG values and corrective doses.
Whilst the DSN said not to bother two-hourly testing through last night, I suggested that we were happy to do it if it meant her basal might be easier to get right.
She agreed and said she’d give us a call – in her own time – sometime later this morning.

Second up: the Doctor

Some people dread the first few minutes of an appointment with their Endocrinologist, but not us, for one simple reason: she always starts with ‘how are you Amy’. She always talks direct to Amy, she leads with questions about her wellbeing and doesn’t lead with ‘your hbA1c result showed that…’.
I love this approach.
We spoke mainly about the pump, how it was going, what it felt like, did the cannula hurt and things like that.
I asked how she found the training day the day before, trying to elicit a response about the Animas pump. I wanted to try and see if there was any issue with us wanting the Animas Vibe and daring to challenge the de-facto standard issue of Medtronic or Roche.
“I like that pump, I think more people may get that one here. What were the reasons you really wanted it?”
This was excellent news, there was no problem about us wanting the Vibe and great news that the Doctor liked it. I went through the many, many reasons we chose Animas over the others.
We offered to come in to do demos for other parents/children who were looking at pumps.

Costa: an easy place for diabetics

It was 11:30am, Jane and I were knackered after a lack of sleep last night. I needed caffeine, so we hit Costa in the hospital grounds.
“Have what you like Amy”
“Really? O.M.G. I’m having that” as she pointed to the Mango and Passion Fruit Ice Cooler.
I should explain that normally Amy would just have water, it’s 0g carbs, or at best a Diet Coke, never something she’d need to bolus for as that would mean another injection. Now it doesn’t, just a couple of button clicks.
Amy at Costa
Jane asked how many carbs and the Barista asked where were sitting and that he’d be one minute.
He turned up with a huge book which he said listed absolutely everything they sold. And it did.
The drink was a massive 55g of carbohydrates, so Amy bolused 4.25 units of insulin for it. What was nice was that she didn’t do a blood test for it, just used the ‘ezBG’ feature to match the insulin to the carbs consumed.
She loved that drink, she loved the feeling of having things she’d denied herself for years.

Retail therapy

We spent the day with some retail therapy, visits to fast food places (which we never normally do) and even succumbed to buying a box of Krispy Kreme doughnuts for film-watching time later that evening.
Amy was ecstatic at the new world opening up to her.
We did have a discussion about everything returning to normal today.
Later that evening I reflected on the way forward:
tweetjabba

Two hourly testing results

We’ve got to test Amy’s blood glucose levels every two hours for the 48 hours after having pump. This is something everyone going on a pump seems to do, although for many they have to do it for a week.
Amy’s levels have been:
Time, BG mmols, correction dose
06:00, 3.6, 9g carbs (mis-calculated carbs for 3 dextro, thought it was 5g each, it’s only 3g! Discovered mistake 30 minutes later)
08:00, 5.7
09:00, 4.9
10:00, 5.9
11:00, didn’t test but had 55g smoothie drink, 4.25u insulin
12:00, we were travelling so we forgot/missed this check
13:00, 7.4, lunchtime, eating huge 105g carbs so had 8.05u insulin
14:30, 4.2, 9g carbs, Amy felt hypo so even though technically wasn’t she had 9g to make her feel better. It worked.
15:00, 3.6, 15g carbs, clearly 30 minutes she was dropping quickly
16:00, 6.5
18:00, 14.2, 2.55u insulin, clearly the 9g+15g Dextro tabs earlier had caught up with her
19:00, 11.7, dinner of 56g so took 6.03u insulin – 4.3u insulin for the food, 1.73u insulin for the correction to bring her levels into range
20:00, 6.8, 40g carbs & 3.05u insulin – post-dinner treat doughnut
22:00, 4.1, 24g carbs for a milkshake, no insulin suggested
00:00, 14.7, 2.35u insulin
02:00, 8.8
04:00, 9.1
06:00, 8.0

Considering what a ‘treat’ day it’s been those figures are amazing.
#Winning

Getting an insulin pump – through the first night

Back at home and bouncing with joy

We arrived back from the hospital with pretty good glucose levels. It was about the same time Amy’s friends were leaving school.
She texted them “I’m home, come over and see my pump”.
10 minutes later several friends turned up and they stayed outside talking in the garden. 20 minutes after that and Amy’s gone hypo (2.6mmol) as they’ve been bouncing on the trampoline, a lot.
I remembered the conversation from earlier about testing out the temporary basal rate; what an ideal time that would have been, if only we’d thought about it.

First extra bolus at home

Amy had already done her first extra bolus at hospital for 3 chocolates, it had gone well. This was a big thing for Amy as she has missed out having snacks/treats for 2.5 years.
She’s always had the choice to have snacks when others are but if they’re more than 15g carbs then she should give some insulin for it. She hates injections with a passion and virtually always chose not to, thereby missing out on snacks. Only now have I realised how much stuff we’ve stopped doing because of this, such as going to the cinema and having a snack during the film. So looking forward to these things now.
Anyway, yesterday afternoon Amy wanted a snack and chose one of the iced buns we’d bought that day. Its 23g carbs would have needed a bolus so on MDI she wouldn’t have had it. Now though, there was nothing stopping her so she tested, bolused and ate. It actually took longer to eat the thing than prepare to eat it. That’s a big bonus.

Fast food

No, don’t panic, we didn’t hit the fast food restaurants last night, but we did have fast food…let me explain.
The normal meal time routine involves calling Amy 10 minutes before dinner is ready; getting her to do a BG test; calculating her carbs (with her) whilst serving up the food; eldest daughter goes and eats; we stay behind to do Amy’s injection; Amy finally gets to eat.
We’ve kind of got used to food starting to go cold, it almost seems normal.
Last night’s meal was different in that Amy carb counted and immediately bolused, in seconds.
The ritual of preparing the injection site, preparing the needle, hovering the needle over the site for what seems an eternity, doing the injection…these have gone, disappeared, hopefully forever.
Eating hot food just might catch on again.

Two hourly testing results

We’ve got to test Amy’s blood glucose levels every two hours for the next 48 hours at least. This is something everyone going on a pump seems to do, although for many they have to do it for a week.
Amy’s levels have been:
Time, BG mmols, correction dose
16:00, 2.6, 9g carbs – should have been 15g but we mis-calculated Dextro carbs
17:00, 5.2
18:00, 7.2
20:00, 3.1, 9g carbs
21:00, 5.2
22:00, 9.2, 0.3u insulin
00:00, 11.7, 1.55u insulin – we would never have done a correction like that before
02:00, 4.2, woohoo, that last correction worked
04:00, 4.7
06:00, 3.6, 9g carbs – interesting as to whether this is hypo or whether 3.3 is the limit
08:00, 5.7

I’d call that pretty darn good.
#Winning

Getting an insulin pump – the day has dawned

Woohoo, we’re live and pumping

What a long day it’s been, but a great one and one which has left us all still smiling.

Welcome to our world…

Dr Sheldon Cooper (Amy’s new pump name), or Sheldon for short, or Shelly when he’s feeling a little sorry for himself. If you don’t know who he is then do a quick Google, he’s a character from the Big Bang Theory, one of Amy’s favourite shows. If you know who he is then all I can say is Bazinga.

What’s in a name?

Dr Sheldon Cooper says he’s one of the smartest people alive…and he probably is. He’s much smarter than those around him.
He makes many calculations each day and in his own words he’s never wrong.
His soul mate is Amy (Dr Amy Farrah Fowler).
On many levels this pump was always going to be called Sheldon.

Our day starts

Amy awoke excited at what the day would bring.
I opened a conversation: ‘so what are you going to wear today Amy?’
She didn’t know which top to wear.
I suggested ‘what about this?’ as I pulled her new pink DiabeTees iPump t-shirt out of my wardrobe.
I’d been keeping it there for the past couple of weeks, trying not to accidentally tell her I’d bought it.
She put the t-shirt on.
Delighted would be an understatement.

Where’s my pump?

In the room today was Emma our Animas pump rep, our Consultant Endocrinologist, the DSN (DSN1) who would be supporting the pump transistion, another DSN (DSN2) who’s never used an Animas Vibe and the three of us (Amy, Jane and myself). The room was pretty full.
Emma handed over the massive box to Amy who within seconds had got the pump out, battery in and raring to go.
Such a large box of stuff, but importantly containing 20 sought-after pink cannulas, to match her pink insulin pump and pink t-shirt.

On with the training

Each of us was given a pump and we all went through the menus, primarily for the Dr and two DSNs who had not used this pump before. We are the first people in paediatrics at Winchester to get an Animas Vibe, I think though we maybe be the first of many.
Amy and I already felt quite comfortable with this because of all the training we’d already had with Annie and later with Emma.

Filling up the insulin reservoir

Amy hates needles so I had no doubt that I (or Jane) would be filling the reservoirs for the first few months.
Before we left this morning I asked Amy whether she was going to go into the session nervously or with confidence. We hadn’t discussed it much but clearly she’d chosen ‘confidence’ as she took the filling kit and insulin vial.
Slowly she filled the reservoir with insulin, cleared any air bubbles, primed the pump and filled the tube.

Fitting the Inset II infusion set

Emma talked us through using the infusion set installation, something the three of us were comfortable with as we’ve all worn one for three days previously. I was surprised that the HCPs showed no real interest as I guessed they’d not used them before.
Amy installed her set with confidence, it had gone in perfectly, but disaster struck as she immediately felt faint. Under advisement from the Doctor she put her head between her knees and within 5 minutes was feeling much better again.
Here’s Amy in showing off her pink Inset II infusion set.
Amy shows off her pink ensemble

Setting up Amy’s pump

The conversation turned to the Doctor and two DSNs as Emma asked them what settings to apply on the pump for basal, and maximum bolus settings and the like. Once they decided, Amy set the pump up under direction from Emma and a close eye from me. I feel confident in setting up basals in the future, although don’t plan to do any changes by ourselves for some time yet.
Amy clipped in her infusion set to her cannula, primed the cannula with 0.3 units of Novorapid and that was it: she was live on an insulin pump.
And relax.

Lunchtime calls, bolusing beckons

It was time for a well earned break, it was lunchtime. We decided to go the cafeteria, get some food and bring it back to the training room.
30 minutes later, back in the room and Amy did a blood glucose test, chose ezCarb from the menu, entered her BG reading (4 mmol), entered the carbs (50g), clicked ‘Show Result’ and instructed the pump to give the bolus insulin (3u).
Success, a first bolus.

Almost done

After a bit more chat about temporary basal rates, sick days and school it was almost time to go, but not before we opened one of the two boxes of chocolates we’d bought for Emma and the HCPs, to say thank you.
The box said it was 23g for three chocolates, Amy had done a test, entered the carb amount and given herself a bolus within seconds.
This is one of the reasons she/we wanted the pump and as for the last 2.5 years Amy refused to have any snack over 10g/15g as she did not want to increase her daily number of injections.

Word for the day?

Brilliant.

Pink pump, pink cannula

Getting an insulin pump – the wait is over…almost

The wait is over…almost

Just a quick update for now…
In three hours time we’ll be starting Amy’s appointment for fitting the pump.
We’re all excited, Amy especially, she’s been counting down the injections one by one, there’s only one left which she’ll take at breakfast time. Luckily we remembered to only take half the Levemir last night.

Questions, questions, questions

I’m normally prepared for days like this, normally writing down lists of questions I need or want answers to. When Amy and I went to the “Portsmouth Hospitals’ Diabetes “Sweet Meet” we’d written loads of questions – we were the only ones who’d done that I think – but we never asked any of them. The day had just flowed nicely and the preparation we’d done wasn’t required.
So today we’re going to wing it: I’ve not prepared any questions and I can tell you that I’m shocked I haven’t. Surely today is more important than anything else we’ve done recently? Surely today we need to leave the hospital in total confidence?

Learning together

There’s no doubt that I’ve done a lot of research about the pumps and whilst I’m sure I know relatively little compared to people who’ve used a pump for a while, I am sure that I know more about the features of this pump than the hospital does. It’s to be expected, Amy will be the first paediatric Animas Vibe wearer, so the DSNs have never needed to know anything about it.
Today then we’ll all be learning together: we’ll be learning about how to program the basal rates; the DSNs will be learning about the pump.
I hope today will prove what a good team we’ll be together. I have not doubt it will.

Over-confident?

I’m a little worried that I’m feeling over-confident about today. Lord knows I’m nervous but it’s just because it’s a major change for my daughter, if it was for me I wouldn’t be so worried.
My confidence boils down to a few things: I’ve done a lot of research, we’re not going into this blind; the #DOC has lots of Animas Vibe wearers who I know will be on-hand almost 24/7; I have phone numbers of parents whose kids are pumping with Animas.
It’s good that the appointment is today as we’re but at the hospital tomorrow for Amy’s quarterly clinic so we can report back, face-to-face, any issues we’ve had before the weekend starts.

Wish us luck then

…and expect a few tweets 🙂

 

Note to DSNs, Doctors, diabetes clinics and CCGS

I’ve referred to this journey towards a pump as a ladder, once which had rungs but just how many we didn’t know.
This process could have been a little easier for us if we’d known at any point how many steps away from the pump we were. Just a thought for you.

Getting an insulin pump – a date with a pump

Rung six (or is it seven) – a date with a pump

Today, sat at work, just recovering from my 12 mile cycle to work I got a call from a number I didn’t recognise. I didn’t answer it immediately but then saw it was a Winchester number, who could it be, I’d better answer it.
It was a DSN whom I’ve never met whose recently joined the diabetes team and it was the first time I’d spoken to her, but what a first conversation to have, which lasted for the next 24 minutes.

Damn you email Spam filter

The DSN had sent me an email yesterday and was surprised not to have had a response, the team at Winchester had obviously told her how internet-addicted I am and how keen we are for the pump – I may have emailed them one or two too many times recently asking progress 🙂
I hadn’t seen the email, it had been caught up by my email spam filter which had decided to ditch everything I did want and nothing I didn’t.

Is the 20th July any good?

I wasn’t near a computer to read the email so the DSN went over the details: would dates for the 20th and 26th July be okay?
“Yes, of course, fantastic, wow, this is great”. “But I just want to check when Amy is going on the school trip in July first”.
We spoke around different issues for a while, discussing how very confident we feel about going on the pump – yes, yes, we know it’s not a cure, yes, yes, we know that Amy might not enjoy the experience – and we spoke about initial use of saline or insulin.
The DSN said she’d like to meet us before the first date, “how about a week and a half before the pump, perhaps on the 10th”.
“Yeah, sure, 10th, that’ll be fine. That’s a Wednesday right?”
“No, the 10th is a Monday”.

Hold on, you mean June?

“10th July, that’s definitely a Wednesday.”
“Sorry Kevin, I’m talking about June, not July.”
“For the chat? Then the pump in July.”
“Erm, no, for everything.”
“Crikey!”

Saline or Insulin?

Many people seem to use Saline for a week or two, just to get used to wearing the pump: we discussed the issues over what would be best.
Initially we both thought Saline would be best but…Amy’s off on a school trip to Europe mid July. So we decided going on insulin immediately was the best idea, to give us 3 weeks to iron out any issues.

A date with a pump

So there we have it, Amy will be getting her pump on 20th June, going on insulin straight away.
I’m so excited.
One week later we’ll go back to clinic to check everything’s okay and learn all the advanced techniques.
I think we’ll find it hard not to use combo-bolusing immediately!
Two weeks later Amy goes on a school trip to Germany.
Actually, I’m now blooming nervous. I wasn’t before but I am now.

 

Did I mention that Amy will be getting her pump on the 20th June? 🙂

Getting an insulin pump – official pump demo – Animas Vibe

Rung five – official pump demo – Animas Vibe

Yesterday we had a 4pm meeting with our local Animas representative Emma at our the hospital. It was Emma’s first meeting with the Paediatrics Diabetes Team at Winchester and that meeting had happened earlier yesterday, which is why I tagged ours on afterwards. Jane and Amy were travelling up separately from another direction.
Jane and I had already had a great demo of an Animas Vibe from Annie a couple of weeks back, but this would be Amy’s first demo, although she’d played with a similar pump earlier.
The RHCH hospital in Winchester only has a couple of adults using an Animas pump, if we go for it Amy will be the first child with one.

Like a blind date

It was funny though, like a blind date where literally I had no idea what Emma looked like. We’d arranged to meet in Costa at the hospital, but it’s large enough Costa to get lost in. I was first in – Jane/Amy were coming separately – followed in by two ladies. I got a coffee, they sat down, and I scanned them – hey, no, not like that! – looking for Animas logos/words/bags but nothing. So that wasn’t Emma with a colleague then, that’s fine, must keep a look out though. Jane/Amy arrived, ordered drinks, well at least Jane did, Costa don’t seem to do anything for a person with diabetes who doesn’t want to take any insulin at that moment. No-one else came in who looked like a rep, no-one else carrying anything. I thought about texting Emma but didn’t but looked over again at the ladies and noticed a tube on the table, scanning around I saw an Inset II infusion set. I went over and introduced myself. We’d been in the same place together for 20 minutes.
The other lady was from another part of Johnston and Johnston, who’s switching to the Animas side soon.

How to start a demo properly

I’d already prepared Emma by telling her not to talk about or demo filling the cartridge; to make sure needle sighting was kept to bare minimum; to make sure she brought pink infusion sets; to make sure she brought a pink Animas Vibe pump.
Emma looked Amy straight in the eye and said (something like) “Amy, how are you and what are you feeling about pumps at the moment?”, followed by “What are you looking forward to about getting a pump?” followed by “What are you even slightly worried about with the pump?”
For probably ten, fifteen or maybe twenty minutes Jane and I took a back seat and listened to their conversation. This was brilliant; exactly what we wanted; exactly what Amy needed; exactly what should have been done, well done Emma.

A pump of many colours

Emma got out five pumps, one brand new which she Amy to look at, hold and feel. The other four were the demo pumps and came in black, silver, blue and pink. Any guesses for which one Amy picked up immediately? It was pink. The only colour missing was green, but that didn’t matter as we’d seen Annie’s daughter’s green one a couple of weeks back. The green would be Amy’s second choice as it’s a nice looking colour.

On to the demo

Emma asked Amy what she does for a bolus at the moment and Amy spoke about her routine. We then ran through how that would be done on the pump. For once I was quicker on the buttons and menus than Amy, but that won’t last, she’ll soon be operating it and blurred-lightning-warp speed, so fast I won’t be able to keep up, so I’m chalking this up as a win for me 🙂
First bolus done, then another, then another.

Combo-bolusing

Emma demoed the different bolus types and spoke for a while about combo (or ‘split’) bolusing. The idea is that some foods take longer for the ‘sugar’ spike to happen, pizza for example and pasta meals, whereas others spike and drop very quickly, such as things high in sugar and low in fat.
This is not something you can easily do when on multiple daily injections (MDI), you literally give the insulin and it does it job in whatever time frame it works in. You give all the insulin in one go, normally before the meal or after, and the only way you can split bolus is to take two different injections. Name me a 12 year old who will be happy to do that!
It’s so easy to split bolus on a pump and makes so much sense, although I can’t make up my mind whether I’m just sold on this idea and it’s useless or whether it’s a damn handy feature. It seems to make so much sense.
I’m sure all pumps are similar but on the Vibe split-bolusing – or combo bolusing as they call it – is so easy: select the option; say how much (e.g 30%) you want now and how much (e.g. 70%) you want later; set the duration for the bolus (e.g. 4 hours); it’s done. The 30% (or whatever) will be delivered now, the 70% (etc.) will be delivered over the next 4 (etc.) hours.
So presumably the next ‘Carbs & Cals’ book will by ‘Carbs & Cals & Protein & Fat & SplitBolus’?

Basals and Temporary Basals

On MDI Amy gives herself about 13 units of Levemir at a set time each day and this lasts around 20-24 hours. Many people say less, others don’t, it’s a debatable area. One thing’s for sure though and that this Levemir is known as ‘basal’ insulin and has a long acting time, designed to get her through the day and mimic what a healthy pancreas does.
On a pump the big advantage is that no longer is a basal injection required as the pump dispenses a very small amount of fast-acting insulin (Novarapid, Apidra) every 2 or 3 minutes.
This advantage becomes even bigger when Amy is doing some sport as exercise will more than likely drop her blood glucose levels. With the pump you can set a Temporary Basal Rate (TBR) to overcome this, reducing the default basal rate by any percentage (in increments of 10). Setting a 30% TBR means she’ll only be getting 70%(ish) of her normal basal insulin for whatever period she chooses. When setting the TBR you not only decide the amount but also the length of time it’s active for, after which it reverts to normal.

Infusion set change

Jane and I had already done a set change with Annie a couple of weeks back, with Annie placing it on her arm for the first time. I didn’t step forward to be the subject last time but this time I’d decided I’d step up and be the test dummy. Amy didn’t want to do it on herself or on me, so Emma got out a couple of sponge-like pads.
Emma gave Amy an Inset II infusion set and took one for herself. Slowly she talked Amy through the process and explained some of the design benefits of the set. Amy was cautious but managed the change very quickly, although didn’t do one part correctly and the set didn’t stick the the pad. I could tell Amy was concerned this would happy all the time in real life but was assured it is normally ok. She did it again and it worked fine.

End of a great demo

A lot of questions from us and Amy later and the demo ended.
Emma had demonstrated the products very well, she’d answered every question we had, she’d reassured Amy of any worries, she’d confirmed all the good things Amy already knew. Thanks Emma.
Amy left there with a smile.

Getting an insulin pump – pump demo – Animas Vibe

Rung five – (un)official pump demo – Animas Vibe

We went to yesterday’s JDRF Discovery Day in Bristol not just to listen to their talks but also to meet up with lots of people from the online Twitter community for diabetes, affectionately know as the #DOC. One of them, Annie, is a huge advocate for Animas pumps in general and especially of their latest offering the ‘Vibe’ which her daughter has been using for a few months.

*Stop Press: Because Annie is such an advocate of Animas, I propose they are renamed Anniemas for the rest of this article.

What’s in a name?

(If you’re a kid reading this please skip this section.)
Vibe! Vibe!? Why on earth!
This was either a very clever marketing ploy or people in Anniemas’s* Department of Pump Naming lead very sheltered lives and need to get out more.
Amy’s 15 year old sister Emilia has already told Amy she can’t have one of these pumps due to the name and even at 12 Amy knows what it means. At lunch yesterday I got a giggle out of Emilia yesterday by telling her that Paul sat opposite had a black Vibe in his pocket.
If Amy gets one of these I’m going to have to tippex out the name on front, either that or smirk every day I see it, for four years – that’s a lot of smirking.
Dear Anniemas*, for the record please do not call your next pump The Rabbit.

First, the Anniemas* 2020

Annie’s daughter has just recently got the Anniemas Vibe pump and when you change pumps you get to keep your old one, which in this case was the Anniemas* 2020.
The 2020 is very similar to the Vibe, a little smaller in length due to the extra bits the Vibe needs to incorporate CGM (continuous glucose monitoring).
Armed with some old insulin Annie showed me how easy it is to full the pump reservoir from a Humalog 10ml vial, although to be honest I was all fingers and thumbs as this was the first time I’d tried anything like this.
Once the reservoir was filled Annie effortlessly primed the pump quicker than I could ask ‘Annie, how do you prime the pump?…oh, you’ve done it”. 🙂

The Inset II infusion set

Annie passed me one of Anniemas’s infusion sets, the Inset II, which comes in three colours, this one being white. Some people say the pink ones hurt less; I think that may be a myth.
Anniemas’s* infusion sets are self contained, everything you need to do a set change is contained in the set itself: there’s no need for you to carry any set insertion device like you do for the Accu-chek Combo.
These infusion sets fit any pump whose reservoir has a Leur lock at the top, so they can be used on Anniemas*, Roche and Medtronic pumps. I found this out from another Twitter user who used to use an Anniemas* 2020, moved to a Roche Accu-chek Combo but didn’t like their infusion sets so uses Anniemas* ones instead.
Annie talked me through preparing the set for insertion. I said “you do know I’m not going to put this on myself don’t you?”. She just smiled.
Once the set was prepared I re-iterated I didn’t want to insert it on myself – now though I wish I had – so Annie took it, pulled up her sleeve and inserted it into her upper arm. She didn’t flinch. I’ve only found out since that she’d never done this before in her arm and didn’t know whether it would hurt. She says it didn’t, I’m glad.

Bolusing and calculating carbs

Bolusing on any pump is a relatively straightforward affair and the Anniemas* is no different than most. It does have an audio bolus option which is designed to allow you to bolus without looking at your pump. As Paul – who runs GBDOC web site and tweetchats – said, you press then button and it beeps allowing you to count the units, meaning that a hidden pump does not have to be accessed. Don’t be confused though, this is not a rival for the covert bolusing offered by the Accu-check Combo.
Amy and I played with the insulin-filled 2020 and within seconds she was bolusing, dripping insulin all over my fingers – the little tyke! (ha ha). We played with all the other functions and it made Amy realise that a transition to this pump wouldn’t actually be a problem.

Food list

Annie hasn’t really set this up on the new pump but the Vibe has a food list. It’s a list of up to 500 foods and their carb values and could serve a limited use, although with mobile phones these days and MyFitnessPal – other apps are available! – it’s hard to see it being used a great deal. Ironically, for a pump which is regulated in the UK (but not the US) for CGM use, the food list is not populated in models outside of the US. So UK users need to create their own food list, from scratch.
Having said all this it could come in useful as Amy is due to go to Europe on a school trip a few weeks after (hopefully) getting her pump. We could therefore pre-load a Vibe with a list of common foods indigenous to where she’s staying. This would be useful as she’ll not have an internet connection on her phone whilst there.

It’s waterproof

Yeah, yeah, it’s waterproof, it’s got an IPX8 rating just like the Accu-chek Combo has. So why then do Roche tell you to try not to get the Accu-chek Combo wet, whereas Anniemas* actively encourage an occasional dunk.
A friend Laura told me last week that a mutual #DOC friend was at the Anniemas* stand at this year’s HPC13 conference and their rep told her to dunk her Vibe in a pint glass of water and leave it there. They’re obviously pretty confident about their IPX8 rating. (IXP8 means ‘Protected against water submersion – The equipment is suitable for continual submersion in water under conditions which are identified by the manufacturer. ‘.)
For info Medtronic’s Paradigm Veo pump is rated as IPX7 (Protected against water immersion – Immersion for 30 minutes at a depth of 1 meter).

Ergonomically easier to sleep with

Paul made a very valid point (I’d not thought of) when he showed us the back of the Vibe. It’s curved. This, he said, made it much nicer to wear against a curved part of your skin. He also said that as he’s got to carry or wear his constantly for the next 4 years it makes sense to pick a pump based on weight/size/design. It’s a very valid point (yet again).

Getting an insulin pump – pump demo – Roche Accu-chek Combo

Rung five – first official pump demo – Roche Accu-chek Combo

After our carbohydrate counting training refresher yesterday morning we stayed at the hospital for lunch as we were due to have a demo. It was all a bit of a rush as we only had 40 minutes to each lunch and switch locations, something not helped by spending 10 minutes trying to decide which sandwich to buy: Amy hates sandwich fillings, there’s nothing she likes that a sandwich retailer would sell. Luckily after 10 minutes I spotted the jacket potatoes.
All fed and watered we went to our demo.

The waiting room

The pump demo was also being given to a husband & wife whose little 5 year old is also due to go on a pump after having diabetes for one year – they’d been sat next to us on the carb course.
Our DSN arrived with pump demonstrator Helen who was pulling a huge crate of pump supplies and accessories.
I understood that this was due to be an informal chat about the pump with one of Winchester’s nurses, so I was very pleased to find out Helen is one of Roche’s pump specialist nurses. This was good news, we were likely to find out far more information than I originally thought.

First look

Helen gave both families a demo box containing the pump and meter. The sturdy looking box had been prettified, kiddified, to aid presentation but Amy opened it up faster than she unwraps Christmas presents and started playing with the pump straight away.
Amy stole ours, I didn’t get a look in.
Helen demoed the functions to us, a job made easier as both families were already using Roche’s Accu-check Aviva Expert meter, which turns out to be virtually the same meter as used with the Combo pump.
Roche had clearly been quite clever with releasing the meter for non-pump users as it makes the transition from their meter to their pump so much easier for everyone: the nurses; the parents; the kids. Helen told us that the meter was originally released for the pump and later amended to work for people on injections.

The meter – we love this meter

Amy had been using the Accu-chek Aviva Expert meter now for some time and it’s been great for her/us because of its bolus advisor.
To explain the testing/calculating/eating scenario which people with diabetes go through every day:

  • 1. test their blood glucose
  • 2. calculate the carbohydrates in the food
  • 3. calculate how many units of insulin they need for the meal, often using pen and paper (as we need to divide by 13 or 12 depending on the time of day)
  • 4. adjust the insulin amount depending on whether they’re high or low, and figuring out whether they already have insulin in their body which is still ‘active’ or ‘on-board’ as we all say.
  • 5. inject insulin. which can be broken down as follows:
    •     5.1. find the correct insulin pen containing the fast-acting insulin
    •     5.2. place needle on the pen
    •     5.3. do an ‘air-shot’ removing any air in the new needle, we use/waste 2 units of insulin for this.
    •     5.4. Amy needs a quiet uncrowded place, which takes time to organise
    •     5.5. remove clothing if required
    •     5.6. inject insulin, counting to ten whilst the needle is in.
  • 6. finally they can eat.

Diabetes is exhausting, you can see why.
Using this meter the process is simplified:

  • 1. test blood glucose
  • 2. calculate carbs and enter it on the meter. The meter tells you exactly how much insulin you need to take, using your ratio for the time of day and taking into account any active insulin
  • 3. inject insulin, using steps 5.1 through 5.6 above.
  • 4. eat.

If you’re on MDI (multiple daily injections) then I suggest you take a look at this meter, it really does make life easier, so much so that I can’t understand why anyone on MDI wouldn’t use it.
The only key difference between the Combo meter and the Expert is the addition of a ‘pump’ settings menu, where you can set the various bits to do with the pump.
Helen demoed the meter, a few seconds behind Amy who’d already sussed it out, without any explanation.
Amy hadn’t really listened to Helen but I could see that Amy had already given a bolus for the virtual 225g she’d eaten and the pump whirred away quietly giving it’s virtual insulin, or air as we like to call it.
So within minutes Amy had already become proficient enough to use the pump. There’s obviously more technical stuff to learn but the simple stuff is just that: simple.

The pump

The pump itself is quite small measuring roughly 8cm x 6cm by 2cm and weighs in at only 110g when full of insulin.
Like the Ford Model T car you can get it in many colours such as black, black or black. They do give you lots of stickers to customise it with though.
So, from the outset it’s not quite as pretty as the Animas Vibe which comes in multiple colours but doesn’t that matter? Should you ever choose a medical device based on its colour? (I’ll avoid the obvious jokes and women and cars at this point.)
The pump is waterproofed as much as any other pump but for some strange reason Roche suggest you don’t get it wet, just in case the casing has cracked after leaving the factory. This is certainly not a plus point for this point; they might as well tell us it’s not waterproof.
The pump runs on an AA battery which they supply, but more importantly they’re available everywhere. If you run out at any vital point the chances are you can at least borrow a battery from a remote control or camera or something.
The pump should last up to 25 days on a single battery.

The infusion sets

Helen demoed the three types of infusion set – the part that sits on and in the body with its little canula.

Rapid-D Link: The first set is very small as has a metal cannula either 6mm, 8mm, 10mm or 12mm long. The great thing about this set is that you just hold it as you would for an injection and push it in the skin. Helen demoed it on our DSN – lucky her! – who I’m glad to say didn’t move, cry or scream. The only downside I could see was that it has a trailing bit of tube, a few inches long, which will always be there, even if you disconnect the pump to go swimming etc..

Flexlink: The second infusion set was the called the Flexlink. It was the one Amy had seen before; the one which made her realise her fears of something metal inside her didn’t need to stop her from getting a pump. The Flexlink features a soft teflon cannula which can be disconnected at the infusion set, without any trailing tubes once disconnected. It’s great that it’s got a teflon cannula, it solves Amy’s issue, but there is a downside: being flexible means it needs to be inserted with a special inserter. This didn’t bother us as the process seemed very quick as Helen inserted the set on/in her, but the other family quite rightly said ‘oh great, another bit of equipment to carry around’.

Tenderlink: The third infusion set was called the Tenderlink and gives the benefit of being able to insert it at an angle, especially useful for fit/lean people who have less body fat. It’s inserted by hand at any angle between 20 and 45 degrees. Once in the needle within the cannula is easily removed and the pump tubing clipped on. Honestly though that needle looked huge and I can’t imagine Amy doing this herself. I’d previously told Helen about Amy and fears of metal cannulas and this one is the one when Helen told Amy not to look, I can see why.
Easy choice: It was a simple choice, Flexlink it would be if we go for a Roche pump. Insertion is easy with the tool which makes it nigh on impossible to get wrong; the soft teflon cannula cures Amy’s needle-in-the-body fears. I can imagine Amy being able to do this set change herself without problem.

Downsides

In my mind there’s only one downside to this pump: it has no ability to work with a CGM (continuous glucose monitor). Helen said it never will and that any other devices from them aren’t likely to reach the market place within the next couple of years.
This isn’t a massive downside as such as it’s always possible to purchase – for example – a Dexcom G4 CGMS but you’d have to fork out £650 for the Dexcom’s display unit, something you would not have to do/spend if you had an Animas Vibe, as it’s built in on that device.
When you take on a pump it’s a 4 year plan, you can’t upgrade (I asked) if a new better pump comes along. Amy’s 12 at the moment and over the course of the next four years will go through some of the most glucose-challenging years possible. She’ll take GCSEs for probably three years on the trot and it would seem a CGM during these times would be incredibly useful.
For those reasons I’m very interested in self-funding CGM, even though it’s incredibly expensive (up to £240 per month). We’d probably only use the CGM when required, to save money, but I’d really like the possibility of doing it, without having to fork out £650 for G4’s monitoring device.

Covert bolusing via Bluetooth

This has got to best the best selling point about the Combo; I can imagine they win over their competitors so much because of this.
The meter is connected to the pump via Bluetooth (ooh Bluetooth says my inner geek).
After the user has done a blood test and entered the meal’s carbs on the meter they press one button and the pump is instructed to deliver the insulin. That’s it!
(In reality there’s lots of bolusing options but for a simple bolus it’s a single button.)
So what that means in reality is that the pump does not need to be accessed. If it’s hidden under clothing, or wedged in a pocket, it doesn’t need to be removed, or touched.
You tell me a 12 year old who doesn’t think this is cool.
CGM or not this pump is the strongest contender at this stage. Medtronic is out IMO so only the Animas Vibe can beat this one.

Getting an insulin pump – carbohydrate counting training refresher

Rung four – carbohydrate counting

This morning Amy and I attended a carbohydrate counting training refresher course at our local hospital in Winchester. We’d already attended a similar session back in September 2011, just after we returned from India, when we switched over from giving a very rough estimate of insulin based on meal size, to a more accurate carb counting method.

Starting off badly

The day did not start at all well: we left the house at 8:30am giving us one hour to cover the 8 miles, easy, no problem. At mile 2 we joined a 5 mile queue which – on checking the traffic maps – had no way out.
We were going to be late.
Dammit.
On reaching the hospital already late we parked in the only single space left in the car park and rushed to the education centre, the one we’d be to before.
They’d moved it…to the other end of the hospital complex, right next to the car park.
We ended up being 30 minutes late.

5 families, 2 kids, 2 dieticians and 1 nurse

There were 5 families there, 3 couples came without the child with diabetes as they were only 4 or 5 years old.
The other family were from the village next to ours and live down the road from us. Amy knew the boy – let’s call him ‘B’ to protect the innocent and all that – from her previous school.
Amy is only one year older than ‘B’ but that year is immense in school years so clearly she’d never spoken to him about diabetes much, if at all. They say there’s strength in numbers, but not if you’re an 11 year old boy and a 12 year old girl.
There were two dieticians there, one to take the session, one to take notes and help out where required.
Our wonderful diabetes specialist nurse ‘V’ was there.
The session objectives were read out and off we went.

5 families, 1 plate and lots of food

On the table in front of us was a massive – 2 metres by 2 metres – canvas with a plate on it. The plate was divided into sections for fruit and vegetables; bread, rice, potatoes and pasta; meat, fish, eggs and beans; high fat and high sugar; milk and dairy food.
It was the NHS Eatwell plate, but without the food.
Then came the plastic food, lots of it, tons of it even.
We each took some food and placed it into the section we thought it should go in.
We all did very well and whilst most were placed correctly, others were not, but only a few.

To carb, or not to carb, that is the question

William Shakespeare’s Hamlet may be been completely different if it was written after the discovery of carbohydrates, but alas the immortal words are the rather less catchy ‘to be, or not to be’.
Next up then was the does-that-have-carbs-or-not quiz using the same food items, pushing those with carbs to the right, those without to the left.
That game is so easy, especially if you change it to the would-I-want-to-eat-it-if-I-was-hungry game.
All hungry people’s brains scream ‘give me carbs’ don’t they? Never I-am-so-hungry-I-could-eat-some-lettuce.
So this quiz was pretty easy for all, bar the odd argument from me – more on that later.

Breakfast time beckons

Next up we were given printed plate photos of breakfast items, ranging from two crumpets with butter, through cereal, to a full English breakfast.
It was okay though as I’d only recently eaten my cereal so the sight of all this food didn’t make me hungry.
In teams we estimated the carbs and went round the room discussing why we’d reached that calculation, before finding out the right value.
What surprised me was how good some of the people were at this. ‘B’ and Amy were by far the best at this game, which surprised me. Amy’s been carb counting for 18 months now but ‘B’ was here to learn but already seemed to know it all.
The same game was played with lunch and dinner and it generally went well.

The Fish Finger Conundrum

One of the biggest discussions was about fish fingers. One family knew the ones they have are 17g of carbs for 3, but course notes said 15g and the book Carbs&Cals says only 9g.
It didn’t seem to matter too much to most but the conversation carried on quite light heartedly throughout the rest of the session, almost like an in-joke between friends.

If it’s got carbs you should count it, shouldn’t you?

During the carb estimates whenever there was just one tablespoon of 5g-carbs veg it wasn’t counted.
It’s 5g of carbs.
The dietician said not to count it, you didn’t need to, it’s only 5g carbs.
“Okay” I said “what if there’s three lots of 5g veggies?”.
We were told we’d need to count the 15g in the total.
“Okay, what if there’s only two lots of 5g veggies?”.
“That’s okay, you don’t need to count it” the dietician said.
My logic brain took over and couldn’t keep quiet. “What? That makes no sense, 10g carbs will raise many kids glucose levels by 3mmol, which in turn needs 1 unit of insulin. Counting the 2 lots of veg at 10g could be the difference between going hyper or not.”
I was told again the we didn’t need to count it.
In my head I agreed to disagree, it wasn’t worth arguing but it still makes no sense to me.
If anyone can explain this to me – without resorting to a ‘just because’ – please leave me a comment; I really don’t understand it.

Getting an insulin pump – climbing each rung and setting up pump demos

Climbing each rung

I’ve viewed the progression to Amy getting a pump as a ladder, one that we appear to be well and truly on. For the record I don’t really like climbing ladders but I’ll make an exception for this one.
The first rung on the ladder is just learning about the basics about pumping, so you can decide on whether you want one.
The second rung is making that decision and requesting a pump.
The third rung is getting back a response from the hospital that you’ve not been totally denied the opportunity. (You never quite get the ‘yeah okay, that’s fine, funding is in place, just pick a pump’ response so anything other than a ‘I’m not sure you’re eligible’ should be seen as a good sign.)
The fourth rung, at our hospital, is to be invited to and attend a carbohydrate counting training session.
Our fifth rung will be to get some demos from either the special pump nurses or by reps from the pump companies.
I’m not sure how many more rungs there’ll be but we’ll worry about that later.

Where to start the research?

I’ve felt a little bewildered on where to start with fact-finding about pumps, even though there’s only 3 key runners available to me.
It should be simple when you consider that it took only an hour or two to decide I wanted the buy the house I’m currently living in and considering the cost of a house against that of a (free to us) insulin pump it’s hard to figure out why we wouldn’t just take the first suggestion from the hospital.
I mean this diabetes malarkey is hard enough to contend with at the best of times so why not just let someone else choose the pump?
But somehow there’s no “oh it’s lovely” or “that’ll do” with the pumps and once chosen we’re tied into it for four years, so we’ve got to make the right choice.
Or do we? Does it really matter? Aren’t they all the same!?
I didn’t know the answers and worse I didn’t know the questions, hence my bewilderment.

Research, research, research

For the past few weeks I’ve been lightly researching the pros and cons of each of the pumps which are available to us, which are by Animas, Medtronic, Roche/Accuchek. The Omnipod is available to us but our clinic will only partially fund it as it’s a lot more expensive, so I’ve discounted that one as partially funding it isn’t an option my bank manager will agree to.
I’m not sure exactly which models are available for us to choose but for now I’m presuming it’ll be the Animas Vibe, the Medtronic Paradigm Veo and it’s definitely the Roche Accu-chek Combo. The Medtronic model may not be the Veo but I’ll do my research on that to start with.
I’ll probably do another post on the information about each pump once I’ve learned more about them all.
A fifth pump, the CellNovo looked like everything this geeky father could wish for his daughter but after contacting them it seems it’s not a likely option for the foreseeable future. Darn it!

The hospital’s view on pumps

The hospital are openly (currently) keener on two pumps, the Roche Accu-Chek Combo and the Medtronic Paradigm Veo.
They don’t hide this, they tell you up front and the reason is very simple: the more they know the pump the more chance there is of offering telephone support from memory and the quicker any problem is resolved.
After a quick discussion though it was clear that whilst this is their preference it is not a restriction and they are more than happy for us to go with another pump, such as the Animas Vibe or Omnipod.
They do have an Omnipod user at the clinic but only one.
If we go for a Vibe we’ll be the first, but this isn’t something that bothers me, we can support the unit ourselves, it’s the basal/bolus rates that we need help with.

#DOC to the rescue for pump advice

Suddenly it dawned on me that there’s loads of pumpers out there already, many of whom I’m either following on Twitter or in many cases I’m following their parents, on Twitter that is, I’m not a stalker!
So to the DOC I turned and started gaining an insight into what questions I need to be asking or researching the answers to.
It seemed clear from the outset that seeing a pump or two would really help matters.

Time for our first real pump demo

I’m excited about tonight as after work Jane, Amy and I are meeting up with a couple of #DOC people who live locally, both of whom I’ve never met.
After one of them – @Ninjabetic1 – recently got a AccuChek Combo pump we chatted and I asked if a demo would be possible, after all only seeing a pump actually started to change Amy’s feelings towards them.
“Of course” she said, unsurprisingly.
After a while we realised that another local #DOC person had a Medtronic Paradigm and was very local. She also was more than happy to give us a demo.
So I’m excited to be seeing a couple of pumps but especially at meeting a couple of people I’ve conversed with over Twitter for quite some time.
The best bit is that we all get to eat cake, well how else can they demo the pump’s bolus feature? (It’s all in the name of science.)

Rung Four: 9:30am tomorrow

Tomorrow Amy and I step up to rung four: we’re off to the hospital for our pre-pump carbohydrate counting training session.
After talking with the diabetes specialist nurse it seems this will be a session very similar to the first with a mixture between people just about to start carb counting for the first time and two families (us included) who are going on a pump soon.

Rung Five: 1pm tomorrow

Things are really moving on quickly and after the training session tomorrow morning the other pre-pump family and us are returning to the clinic for an informal pump demo by the hospital’s Roche pump specialist.
Personally I hope that I know everything they’re going to tell us as it will prove that I’ve done my research right. But even if this is the case it will be nice to get the hospital’s angle on the pump.
I might even get to find out whether the Mexican-wave-bolus is an urban myth or not.

All demos done

We’re ending a very busy diabetes related week with a visit to JDRF’s Discovery Day in Bristol on Saturday. An event where the parents get to listen to talks whilst the kids get to visit the @Bristol science centre in the same building.
We weren’t due to go to Bristol, we’d booked for Dorset, but as soon as I realised a couple of other #DOC people were attending I wanted to go there instead to meet them.
Now, there’s so many #DOC people going that I’m more excited about meeting them than going to the JDRF day; I can’t even remember what the day is about anymore. Oops.
A bonus of this day out is that one of #DOC has an Animas Vibe and has kindly offered to give us a demo.
So within three days we’ll have had demos of every pump that we’re currently thinking about.
Then the real research can begin.

Getting an insulin pump – inspiration from Paul Weller

“I should have been there to inspire you”

I was playing a Paul Weller’s Heavy Soul album in the evening after Amy’s clinic in December 2012, the one where she fainted.
My favourite tune from that album came on and it made me think, take a listen whilst you read the rest of this article

Nice song, shame about the lyrics – well kind of

Mr Weller’s written a beautiful song there but actually the lyrics point towards someone who’s failed someone else at some point in their life. Someone who knows now, when it’s too late, that they should have put something in place to help someone else.
Jane and I aren’t perfect parents by any stretch and we will fail at some bits but we can’t afford for it to be Amy’s diabetes management; we won’t let that happen.

“I should have been there to inspire you…”

I love that line and when I hear it it makes me think, “yes, I too want to inspire”.
It struck me that we need to inspire Amy to create a positive attitude around diabetes and not a destructive one; an attitude which gets on and deals with what needs to be dealt with; an attitude which makes her want to take care of herself; an attitude which makes her want to stay fit; an attitude which keeps her from diabulimia through the next impressionable years.
More importantly I never want to have to say the words in the song when it was too late, when something bad had happened, because that something bad could well be life threatening or disabling.

“…not paint your world a cold, cold blue”

The aptness of the lyric was not lost on me.
Blue, being the colour of the international diabetes symbol.
Blue, being the colour associated with sadness/depression.

Starting with fitness

Trying to get or stay fit can be hard work; it’s always seemed too much like hard work for me, but I loved playing sports even if I wasn’t that good at them.
Amy’s not particularly sporty, she’s not a member of any clubs, but she loves trying new things and so it began. We stepped up visits to the Leisure Centre and I introduced Amy to the game of Squash, something I played every week back in my 20s (yes, yes, it was a long time ago!).
Amy loved/loves Squash and in the first few weeks we ended up playing it twice a week. We’ve missed a few weeks here and there, interspersing it with Badminton and generally having great fun doing it.
I should add that this has been made so much easier but our local leisure centre operator DC Leisure, whose off-peak price for a court when a child is playing is only £1.95 for 40 minutes, instead of £6.90. Well done DC Leisure, you’ve made it so much easier to teach my kid a sport and get them interested.

Starting with attitude

I wanted Amy to know she wasn’t alone, being a kid with type 1 diabetes. She already knew that Dad spent far too long on Twitter talking to adult people with type 1 diabetes and we’d taken part in #GBDOC’s first ever Kid Tweetchat, but honestly she’s too young for Twitter at the moment.
I’d read about the JDRF T1 Youth Ambassadors programme and got Amy to sign up, to become part of something, to join a collective that intends to help get the facts about diabetes right.
She needed no persuasion and signed up immediately.
More to follow on this further down the page.

Starting with fitness and attitude

At the December clinic our Endocrinologist/Doctor and I were discussing use of Twitter and the DOC when she said that she had heard a talk from an inspiring young type 1 runner from London who went by the name of, I stopped her and said “Gavin? Griffiths?”.
(Sorry Doc, oops, won’t do it again.)
She was clearly very impressed with Gavin’s attitude to diabetes and how he dealt with and managed it.
Gavin (@diathlete) and I have followed each other on Twitter for a while now and I was well aware of his amazing plans for running from John O’Groats to Land’s End during April and May 2013, in an challenge known as the GBR3030.
I approached Gavin and asked if would be okay if Amy and I cycle next to him for one of the 30 mile legs of his journey; he seemed pleased at the idea.
I brokered the idea with Amy who gave an immediate “yes”.
If one ounce of Gavin’s never-let-diabetes-stop-you attitude rubs off on Amy I’ll be a happy man.
We currently plan to cycle the Bodmin to St Agnes route on the 25th May, the penultimate day of Gavin’s challenge, with Amy raising money for DiabetesUK and JDRF.
To donate please use the main donation page for GBR3030.

Helping with education too

Amy’s already written a few very well received articles for this blog, so well received that her diagnosis article was the second most read page, only just behind my World Diabetes Day post.
I needed her to write the final article for our series about travelling in India with type 1 diabetes which she did, making her remember the things that she did were already amazing to some, making her realise she’s achieved things that some people will never achieve making her remember how diabetes did not control her on that trip.
That article quickly became the top article on the blog and I couldn’t be a prouder parent.
JDRF seem impressed with that article too and if all goes well it might feature in one of the next T1 Kids magazines.

What’s this got to do with getting an insulin pump?

Well, the final bit of the jigsaw for me was that I already knew that in general pumps are pretty good news.
I wanted Amy to know about them but this was going to be hard, although not quite as hard as I thought.
Hopefully you’ve already read the blog articles about the 15th March so you’ll know what progress was made during and after the clinic.
I truly believe that some of the stuff we’ve started this year has had a good effect on Amy’s attitude toward diabetes. Her interest in management has increased and her knowledge too.
Without all of this I don’t think she’d be on the waiting list for an insulin pump.

And finally, my New Year’s resolution

At a party on New Year’s Eve, midnight came and everyone hugged, chinked glasses and kissed. Friends wish each other good times, but Amy was nowhere in sight.
When she appeared we hugged, kissed and wished each other Happy New Year and she asked “Dad, what’s your New Year’s resolution?”
I decided not to tell her the only thing on my mind: “to inspire you with your diabetes management, to set you up for a healthy future, to get you a pump if you want one, all in 12 months.”
This may well be the first New Year’s resolution I’ve ever kept.

Thanks for reading.