“I heard you being sick again.
Why were you sick?”
This morning I’d woken up feeling
nauseous. I got out of bed, leaving Mr T asleep, and pottered around the house,
tidying and chatting away to the degus. I took an anti-sickness tablet and made
myself some ginger tea – someone had suggested drinking it when nausea sets in.
Not long after the kettle had boiled I was in the bathroom bringing up last
night’s dinner. I had eaten 12 hours ago yet there it was, clearly it had been
sitting in my stomach overnight, not heading anywhere. I instantly felt better
after emptying my stomach, brushed my teeth and went back to my ginger tea. It was a
relief to have the undigested food out of me and the nausea settled quickly, but it wasn't healthy, I knew that, I worried about the damage that was being done after years of vomiting on and off.
checked the screen on my insulin pump and looked back over the CGM (continuous
glucose monitoring) trace for the past 12 hours. I could see that my pump had
suspended my insulin around 45 minutes after I had bolused for my evening meal –
the pump does this when the CGM picks up that I’m heading for a hypo. This must
have been because the insulin started working before the food had digested.
Throughout the night I could see that my glucose levels were unusually flat, with
no post meal rise at all. This wasn’t surprising now that I know my food didn’t
really leave my stomach (or the majority of it anyway).
This, compared with other days,
has been a relatively easy day. For the past few weeks since I’ve had the CGM
and been able to see exactly what my glucose is doing, I’ve become increasingly
frustrated and scared when seeing my glucose levels. I have lows not long after
eating and highs much later, this is due to stomach emptying as described above.
I have tried to adjust to this by taking my insulin after I have eaten and spreading the delivery out over an hour or so. Sometimes this is effective, sometimes
it isn’t. My stomach will, at times, empty like it should, meaning that I
then have a high followed by a low, due to taking insulin later.
It’s almost impossible
to take insulin to cover food as I never know when or if my stomach will empty.
How can I predict that? I can’t. It’s opening up a whole new world to me and
along with that come more and more questions. How will I manage this when I don’t
have CGM in 3 weeks time? What will my a1c be like? Will I be able to have an
a1c that will be safe enough for me to have children? Will this cause my retinopathy to progress? Will this cause me to have further complications related to
uncontrolled glucose levels?
Taking it each day as it comes
seems to be the only option with something this unpredictable. I’ve started
medication as prescribed and I’m self-managing as best I can from information I
have found on the internet. I had always thought that I quite liked spontaneity,
not planning ahead and seeing what the future brings. One thing I have learnt
over the last three weeks is that when it comes to my health, this is the
opposite of what I want. It’s frightening, it’s depressing and it’s still
something that comes as a huge regret.
Take care of your diabetes as much as you can, and hopefully it will take care of you.
I’ve written and re-written this
blog so many times today. It has been a day of mixed emotions and with each of
those came a different blog. I woke up and I read the letter that has caused
these emotions over and over again, which lead to me writing an angry blog. I
then became tearful as I looked in the fridge for something to eat, that lead me
to write a slightly depressing blog. Now, as I sit at home, feeling hungry but
once again not knowing what to eat, I’m just feeling incredibly confused.
Yesterday was the day I had been
waiting for… I had waited 6 years for this letter to arrive and I knew what it
was going to say, but that didn’t stop me from sobbing to myself all the way
home. I have yet another diabetes complication.
You see when you’re diagnosed
with a complication you tend to know that there’s a problem long before any
health care professionals do. You know your body well enough to feel that
something isn’t quite right, even if you can’t put your finger on what that
might be. For me the tell tail signs were nausea, vomiting and abdominal pains,
however these were intertwined with fatigue and fluctuating blood glucose
levels. Six years ago when I started to experience these symptoms I knew very
little about diabetes and delayed stomach emptying, in fact I don’t think I
knew about it at all. Off I went to the professionals to look for advice, only
to be told I was suffering from symptoms relating to stress. Back and forth I
went for the next six years when the symptoms had caused me to take time off
work, but eventually I gave in, knowing that my attempts to get to the bottom
of what was wrong were falling on deaf ears.
I’m not going to lie, I’m feeling
quite angry about this, not only angry but also let down and saddened. As many
of the people reading this will understand it’s incredibly hard to trust others
to look after us and we need to build relationships that are based on trust. Knowing
that the trust I gave ended with me not being diagnosed when I should have is
possibly the hardest part of all of this. That trust has now been taken back. It
sounds strange but after a while I even convinced myself that I was making it
up. If health care professionals couldn’t diagnose the problem then maybe there
was nothing wrong… surely they must be right?
So I got by for those 6 years
with my symptoms, however last year I went through 4 months of near constant
daily vomiting. I would wake during the night and spend hours lying awake on
the sofa, running back and forth to the bathroom bringing up undigested food. I
would avoid leaving the house as often as I could and struggled my way through nursing
placements working 14 hour shifts, determined not to let whatever it was bring
me down. My other half and my family became increasingly worried – They knew
that I was vomiting and in pain but there was nothing they could do because
there was nothing I could do. I looked terribly pale (even more so than usual),
I had no energy or enthusiasm and I tried to hide it from them as often as I
could. It’s always easy to paint on a smile.
I was admitted to hospital four
times in the last two years in DKA, once vomiting for 5 days in a row. Each
time I told the people looking after me about my symptoms but I was told that
they didn’t need investigating, it was expensive and my nausea was settling. On
my final admission when in resus, through tears and pain, I told my nurses that
I had had enough and something needed to be done.
Now that something has finally
been done and I have my results I should feel better, right? Well, it’s 50/50
really. For the last 3 years since I’ve been in ‘recovery’ from my rebellious
diabetes years I’ve tried incredibly hard to gain control over my blood glucose
levels. I often looked at other peoples HbA1c results and couldn’t understand
why I wasn’t achieving my goals. I was doing everything I should be, but at the
back of my mind I was always wondering… “Is my stomach emptying later that it
should be? Would that explain the mystery hypos & highs that I was
experiencing?” In the end I decided that it was down to me, that I was the
problem and that I just wasn’t good enough at having diabetes. In a way I think
I was right – I know I wouldn’t have this problem if I had taken my insulin and
tested my blood glucose as I should have. If there is any blame about the cause
of this complication then I accept full responsibility and I will tell myself
that every day, every time I eat and with every high or low that I see. I know
I shouldn’t… but I can’t help it.
It actually feels quite strange
to be finally talking about this. After having symptoms for such a long time I’ve
become quite used to them (on the good days) and have come up with quite a few
strategies to cope with them. I always felt that unless I had been diagnosed I
shouldn’t talk about it because I was playing a guessing game and there was no
evidence to back me up, just that feeling that I couldn’t quite put my finger
on, oh and years of nausea, vomiting and pain.
So what’s next? I’ll have a
follow up with the wonderful (he really is wonderful) Gastro consultant who I
saw during my initial consultation, he’ll talk to me about how I can manage it.
He’s also said I need to maintain as much control over my blood glucose as
possible (easier said than done, eh) so I’ll need information about managing my
insulin and I think I’ll need dietary advice too. It’s a brand new diagnosis
and it’s incredibly scary to know nothing at all about it – I feel very much
how I did when I was diagnosed with diabetes, but hopefully I’m a little wiser
now (we can only hope!). Only time will tell.
For information on Gastroparesis (delayed stomach emptying) see here and here.
The Diabetes UK Professional Conference is over and now it’s
time to reflect. In my column for The Diabetes Times I wrote about the topic I
would be presenting at the conference and how it needed to grow from previous years.
It needed to make more of an impact. I think it’s very important that after
each talk the audience goes away with something to think about, something they
can try to implement in their departments, and I believe that many of them did.
One topic, language, came up during the presentation. That
day, language had been discussed via twitter by patients who were discussing
the use of the word ‘non-compliant’. It hit a nerve with many people at the
conference, patients and Health Care Professionals (HCP's) alike, and luckily the group I was presenting
with had a stage to address that problem. In my presentation I made a point of
telling the audience that I was labelled as ‘non-compliant’ due to being in DKA
so many times - I make a point of mentioning this in all of the talks I do. I
was not able (for so many reasons) to manage my diabetes in the way that I
needed to, but in no way did that mean I was purposely not complying with rules
that had been set for me. A patient who is struggling to manage their diabetes
is not a rule breaker, they do not need the added pressure of feeling that they
are purposely causing problems for others, they need support and guidance and
they need (and very much deserve) respect in the way they are talked to and
about. I hope that the use of language continues to improve.
During my session I talked about my journey with diabetes,
trying to condense it into a 10 minute presentation, and tried to convey the
seriousness of the first 10 years after my diagnosis. However, I didn’t need to
tell them how dangerous my habits of not testing my glucose levels or taking my
insulin correctly was. The audience was made up of health care professionals,
they knew the seriousness of my actions. The way that I used to manage my
diabetes shocks many people, myself included, but time and time again I hear
about patients who are just like I used to be... HCP's ask me about how I turned
things around and my honest answer is by using social media, however I still
feel that I chose to gain control far too late. I wish I had done it sooner, I
wish it had been suggested to me sooner, and that’s what I hope to get across
to HCP's when I talk to them, that a turning point for their patients could be
just around the corner.
During my presentation I talked about how my recovery began.
For me it was a combined recovery, using face-to-face clinic appointments
alongside social media. I think for many HCP's this may sound like a strange
combination, or certainly a few years ago it may have, but now I know many
people who, like I did, use social media as a part of the diabetes treatment. For
so many, thousands in fact, social media plays an important role in not only
peer support but also diabetes education, building confidence around living
with diabetes, learning to trust and communicate with our health care teams,
developing our own knowledge and understanding about the condition and many
more aspects. Social media isn’t just about sharing pictures of cats, it’s so
much more than just being social, it’s about learning, directing, engaging and
developing. The face-to-face appointment aspect has really helped me too – It made
me realise what a wonderful, dedicated and passionate health care team we have
in Portsmouth. In a funny way it wasn’t until I started to really trust them
that I realised how passionate I could be about the condition that had
tormented me for such a long time.
The ‘and finally’ part of my talk came with a take home
message - although there are thousands of patients who use social media as a
part of their diabetes treatment, there are still thousands who don’t. There
will be many reasons for this and, as I said during my talk, social media isn’t
for everyone, but there will be many patients who can and will benefit from it. Perhaps
it would just take that small suggestion, like I had three years ago, to take a
look and see what comes of it.
Three years ago, when Partha suggested I set up an account
for local patients to connect with one another, I didn’t think it would help my
diabetes in the slightest. I really felt that I was a lost cause, however I’ve
achieved a lot in the last three years – A reduced HbA1c, dormant retinopathy,
confidence in living with diabetes, knowledge of how to avoid complications,
feeling able to take control and improve my self-management and perhaps the
most important to me is being involved in making changes in how diabetes care
is delivered for others. If I had known all of this after my diagnosis, before
I took so many wrong turns and ended up in trouble with my health, I would have
done things very differently. I would have taken responsibility and had better
outcomes and that’s what I hope others can achieve. Like I said, it’s not for
everyone, but for some, social media can be one of the best tools they have
I gained 88 new twitter followers during the Diabetes UK
Professional Conference. Over half of these are Health Care Professionals… Now
I’m excited to see how we can work together on social media for the benefit of
patients. Let’s see just how much of an impact we had and which changes have
been made at next year’s conference…
“After bouncing off stage I let out a huge sigh of
relief. I looked around and saw faces staring at me, smiling at me, nodding and
clapping... It was a very surreal moment, but one that will stay in my mind
I wrote this last year after
delivering a presentation at the Diabetes UK Professional Conference about the
Diabetes Online Community. I was able to provide an insight into what online
support has to offer patients, their families and carers, and touching on how
Health Care Professionals (HCPs) could introduce it to their patients. The
audience was comprised mostly of HCPs, which gave me perhaps the biggest
opportunity I’ve had to get my message across to those who can reach wide groups
of patients. Social media may not be the biggest player when it comes to
improving diabetes care, but you can’t deny that it has become a key influence
for thousands of patients in the UK, if you want to find out for yourself then
go online and listen to what they’re saying.
Tomorrow I will be heading
off to London, once again, for the Diabetes UK Professional Conference, this
year titled ‘Time to Take Control’...
“Diabetes is a lifelong condition that causes a person’s blood sugar level to become too high” – NHS Choices.
Yes, diabetes is a lifelong condition, the NHS clearly states that message. Healthcare professionals break that jaw-dropping news to us and our families when we are diagnosed, we read about it in the papers, it stays in our minds with every injection, cannula change and finger-prick test we do, and we have no way of getting away from this incurable condition that we live with day in and day out.
Some of you may know that I've been lucky enough to be offered a 64 day trial of the brand spanking new MiniMed 640G by Medtronic. Why 64 days? Because the number 64 is in the pumps name. Why not 640 days? Well, I asked (a few times), but sadly the answer was no. But hey-ho... I'm not complaining!
So during the 64 days I'm going to be vlogging (it's like blogging but with videos - vlogging!) on youtube about my experiences with the 640G. You'll also find two other patients with Type 1 who are also using the 640G and will also be vlogging - Dave (@SowerBee) and John (@MM640G).
For those who haven't heard about this pump you can find more info on a previous blog that I wrote about it. It goes into a lot more detail about the technology and the aim of the new system,
What can I tell you so far about the pump?
Ok, I'm only a few days in so I want to start with the insulin pump. It's taking some getting used to as I've been using another pump by another company for 2 years now. I found it really helpful to sit down with a cuppa after my training and just have a look around the options and settings, just taking time to get used where everything is and how to access the options I'd be using. It's important to be comfortable with medical technology - There's no set time that you should be used to it and 'flying' through the options. Everyone learns at a different pace. Asking lots of questions helps! The pump itself - I love it!
I'm not just saying that because I'm trialling it - but I really rate it (yes rate, not hate) and after a week of using it I would be more than happy to continue using it in place of my regular insulin pump. As a stand-alone pump (forget the CGM and SmartGuard for now), it's bloody impressive! I've never used a Medtronic product before so I have no idea how similar it is to other pumps they have, but personally I think it has set the standard in terms of what's on the market at the moment. The pump provides a vast amount of options and functions, offering much more control (in terms of diabetes management) than I'm used to. For some I can imagine that may be slightly intimidating (I was a little overwhelmed during my training session) but don't let the amount the pump can offer put you off - as a patient you are in control. Now that I've had a few days to get used to the pump I can see just how beneficial it can be to my day-to-day diabetes management. In a strange way, as much as it gives me more control, I also feel it gives me more freedom through the choices I can make.
It's the little things that have impressed me...
For example - I can flag specific events that have affected my blood glucose (BG), so if I've had a mahoosive pizza and my BG has shot up I can flag that on the pump. Similarly if I've had a post running hypo, I can flag that too. Then in my appointments when my consultant says to me...
"What happened on this day 2 months ago?"
my answer won't be...
"2 months ago? I don't remember what happened 2 hours ago!"
... but it will be flagged in my data which will give us both more insight into what actually happened, rather than guessing. We all know how hard it is to remember every little detail! Other awesome pump things... (These aren't all of the options but they are a few of my favourites).
It has a big colourful screen - this is a huge help to me as I have retinopathy
Sexy design - It looks like an iPod and is very sleek and smooth (does that sound weird?)
The belt clip is also the key that unscrews the battery cap! (No more 5p tricks!)
It has a back button (this impressed me far too much)
The menu is incredibly easy to navigate
There are clear sections in the menu depending on which info you need - e.g. history which is broken down into sub-sections - alarm history, daily history, sensor glucose history etc.
The pump will remind you when you need to change your tubing and re-fill your reservoir (no more "when did I last do that?" moments
It has a 'reminders' section which has sub-sections that can be personalised e.g. reminders to take other medications, check your BG, a 'missed meal' reminder etc. - I really like how personal I can make this pump!
It also has the regular functions that you would expect from an insulin pump, like bolus delivery options and temporary basal rates.
Are there any cons?
One biggie that had me worried when I started using this pump was that the blood glucose meter that works with it doesn't have a bolus wizard, only the pump does.
A bolus wizard basically calculates the amount of insulin you need to take for a meal (or a correction dose) depending on your blood glucose levels, the carbohydrate content of your food (if applicable) and other factors such as exercise or illness. Now... my current BG meter has a bolus wizard which does all of this and then sends (via Bluetooth) the amount of insulin I need to my pump which then delivers it, meaning I don't need to fish around in my bra or pockets to find my pump and do this manually.
Th Contour Next meter (the one working with the 640G) doesn't have that function, meaning trips to the bathroom or a different room to pull the pump out from wherever I've hidden it in order to use the bolus wizard. There is an option on the BG meter to deliver a pre-set dose of insulin from the meter straight to the pump (no fumbling) and also to give a dose of insulin that you've decided yourself straight to the pump (also, no fumbling). For some people this isn't a huge con, but I think it depends on how open you are about using your insulin pump - everyone is completely different. Personally, I don't mind people knowing that I have an insulin pump, however, depending on the situation (a meeting or a lecture for example) I would much prefer not to be fumbling around in my bra for my portable pancreas.
Currently this is my only con and one that I was aware of before getting the pump. But who knows... at the end of the 64 days maybe this won't be such a big deal for me! At the moment the pros certainly outweigh the cons! I'll blog about the CGM and SmartGuard soon... I promise!
I remember my first blood glucose meter. It was grey and bulky, living in my bedside draw, only to be used when I was on the verge of a hospital admission. I didn’t understand what the numbers on the screen meant, testing my blood glucose levels was just something that I’d been told I had to do. The message behind the numbers was non-existent, partly due to a lack of education, but mostly due to a lack of interest in the device itself. As a teenager, carrying around a grey and bulky medical device wasn’t my thing. Any gadgets I did have were modern looking and engaging. My blood glucose meter didn’t suit me but that doesn’t mean that I didn’t need it. I wonder how different my diabetes management would have been if I’d been given a meter that I actually wanted to use…
When I was told about Modz, a blood glucose meter with Angry Birds gamification and eHealth features, I was intrigued. The device was aimed at children and young people, but instantly the big kid that lives inside me wanted to know more!
The meter looks like a lot of fun! It comes in
bright, funky colours, with 2 user interface options – Modz or Angry Birds (how
cool is that!). The meter can remind the user that they need to test their
blood glucose by showing an image on the screen, playing music/whistles or with
vibrations, which helps people to be consistent with their testing. The meter
stores not only blood glucose results (3000 of them!) but also carbohydrate
content, insulin doses, and any exercise undertaken, giving the user a better
picture of what affects their blood glucose levels and how. The meter is also
motivational, making blood glucose measuring fun by giving points and rewards.
Modz have done this because they want to make blood glucose testing exciting, but also
with the aim of it leading to, and maintaining, a great HbA1c.
Now here’s the really cool part… the meter will then automatically send a text message with the results in real time to a mobile phone or email, as well as a designated cloud service to be accessed at any time by the user, their parents/carer and results can be sent to their Health Care Professionals! There is no need for cables! Personally I love the text message idea and was really impressed when I heard about it. I hear from so many worried parents who want know that their child is safe whilst at school, at a sleep over etc and their biggest worry is what their child’s blood glucose is. This seems like the perfect option - peace of mind and reassurance for the parents whilst the kids get on with being kids. Also, parents won’t need to worry about reminding their children to test because the machine does that for them!
After asking a few questions to the team at Modz I found that is not yet available for free in the UK, however plans are in the pipeline for the meter to be available on the NHS in the near future (fingers crossed!). I also enquired about technical support and was told that there is a 2 year guarantee on the meters (just contact Modz and they will send a new one) and there is technical support available via phone on weekdays as well as a list of FAQs on their website.
Modz has launched this exciting new product today (Tuesday 10th February 2015) and it can now be bought through their website. Check out their site out for more Modz blood glucose meter information.
Today is an exciting day for people with diabetes as the hotly
anticipated Diabeto Device is now ready for pre-order! Diabeto have launched their impressive indiegogo campaign where you can find all the info you will need to know about
the product, the ideas behind it and the dedicated team that created it. It really is impressive - You should definitely check it out!
I have to say that I have been waiting for this device to hatch and spread its wings for what seems like forever (in reality only 2 and a bit years) and I’m really excited that it has finally happened, not
only because I desperately want one, but because I’ve seen how hard the team have
worked to make this a fantastic product available for people with diabetes.
The overall aim of Diabeto is to make diabetes management easier for us, to give us a tool that is empowering, to give us insights into our blood glucose levels and what affects them and to help us to have a better quality of life.
What I like about this device (and that's before I've even laid my hands on one) is that is was created by people who went out of their way to involve people with diabetes in the design and build process. All too often I use products or apps and I'm left wondering how much real patient or carer input has gone into them, but with Diabeto I know that it's a product for people, not just for a condition. This is something that's very important to me as the diabetes/tech industry continues to grow and I think many companies could learn a lot from these guys.
Diabeto comes in 2 parts - The birdy device (see pics) and an app. The bird plugs into your blood glucose meter and sends (via bluetooth) your blood glucose info over to the app on your smart phone. Readings are then stored onto a secure cloud server so you can access them. Simples!
Here are some of the features that I really like:
The device itself really appeals to me. It's fun, small and doesn't look like a medical device. Great for kids but I'm almost 29 and I would definitely use it
It can be used on the go
The app allows you to track more than just your glucose. You can track your mood, insulin, carbs and activity as well as review your blood glucose log.
You choose how much or little you want to track
The app will plot a blood glucose graph for you so you can pick up trends and patterns. This can then be sent to your health care team in pdf format - putting the patient in the drivers seat
The app is free and available on iOS and pebble watches. Android users (myself included) hopefully won't have too long to wait for the app
Readings are secure in the cloud
Diabeto is compatible with 25 blood glucose meters and the team are working on making it compatible with more
Diabeto uses open source hardware meaning that schematic, design files and a bill of materials can be downloaded and used by anyone - The Diabeto team wins some serious cool points for opening it up to the community!
Take a look at the indiegogo campaign for more details on the device and also details on how you can pre-order your very own Diabeto. You'll see that you can also get the device at a special price - The first 100 birds are only $49 (usual price $59)!!
They also have a range of cool perks should you wish to support and contribute to Diabeto including:
$1 - A thank you for being part of the family gets you regular updates and your name on the website's 'Thank You' page
$15 - Diabeto stickers and your name on the website's thank you page
$25 - Diabeto Rockstar t-shirt
$29 - Rockstar T-shirt and sticker pack
and there are a whole load of great offers on Diabeto packs!
Yesterday I went off to Medtronic’s UK head
office expecting to continue with our usual blogger and patient advocacy
meetings. What I didn’t know was that I was actually going to be given an
exclusive preview and test run of the new Medtronic MiniMed 640G insulin pump
and CGM system with new SmartGuard technology! Now that's what I call a good day!
As a Medtronic patient advocate I have
been working alongside them, with a group of other patients and carers, to help them move into the world of social media and digital health care, and to offer an insight
into what patients really want from diabetes technology. This in itself bought
me the opportunity to travel to Amsterdam last year to blog about their Diabetes Junior World Cup, and here I was again, with yet another opportunity!
I should explain something else… I’m not currently a Medtronic user, but what I really like about the company is that this doesn’t
matter to them. I have diabetes, I live with it day in day out and I have views
about it – the products that I do or don’t use (often this is out of my control anyway) doesn’t matter to
them. This, of course, doesn’t mean that I won’t be a Medtronic user in the
future and with the new and exciting MiniMed 640G technology, I could be easily
So… enough about me… the 640G is what you need to know about!
The MiniMed 640G is a sensor augmented
insulin pump. Medtronic has a vision and that is to create an artificial pancreas
and their 640G is the next step towards achieving that vision. Their aim is to create
technology that gives people more freedom, improved safety and better health when
it comes to diabetes. We know that many companies have this same aim but this
product (from what I saw) really does deliver those aims.
The 640G uses a new technology called SmartGuard. SmartGuard is designed to give people advanced protection against hypoglycaemia
and hyperglycaemia. The intelligent system has been
based on the wants and needs of people who already use the Paradigm Veo insulin
pump, providing better blood glucose control and safety, especially when it
comes to nocturnal hypos – something that I think worries us all from time to
The system is similar to Medtronic’s Paradigm Veo
but, as I said, it’s far more advanced. The Veo has a low glucose suspend
function in which the pump will turn off insulin delivery for up to 2 hours if a person's blood glucose levels reaches a pre-set low glucose threshold. However, the
new SmartGuard tech will turn off insulin delivery before a person's blood glucose hits the low glucose threshold, therefore avoiding
hypoglycaemia. It does this by predicting a persons blood glucose levels 30
minutes before they are going to drop (providing they are also using an Enlite CGM - Continuous Glucose Monitor). The prediction is based on
how quickly the person’s levels are dropping. The pump will alarm/vibrate to alert the person that the insulin delivery will then be turned off (for a minimum of 30 minutes) and will stay off until their blood glucose starts to rise again or until they feel better and manually override the system to turn their insulin delivery back
When insulin delivery is turned off to avoid a hypo this means that all insulin is turned off - basal and any bolus programmes that are running - e.g. dual wave. If the person would prefer to eat/treat before the auto-suspend starts then they can stop the suspend function and treat the impending low like they usually would. The user is very much in control of how the system works.
A high threshold can also be set, in which the pump will alarm/vibrate if a person is going to reach their high level, therefore allowing them to manage the impending high (correction, temp basal increase etc). The pump will not automatically deliver more insulin if a person is reaching their high threshold - This is what a closed loop system (artificial pancreas) is but the technology isn't quite there yet.
One important question that was asked by
fellow blogger Mike (@everydayupsdwns) was; What happens if a person’s
blood glucose drops below the pre-set low glucose threshold but does not rise
again within the 2 hours that the insulin delivery has be turned off for? The
answer is that the pump will only turn delivery back on after 2 hours if the
person has physically interacted the pump e.g. pushed a button, therefore the pump is recognising
that the person is aware of the hypo. If, for example, they are unconscious
and do not press any buttons, the insulin delivery will be suspended for a
further 2 hours, so 4 hours in total. After those 4 hours… well I just hope
that the person would be found by then.
We joked that the pump could have technology
like cars do which alerts the emergency services if it is involved in an
accident and its location. I actually think this is a brilliant idea. Maybe something
for the future, eh :)
We were told that the algorithm that is used in the SmartGuard technology was the same that was used in the Pilgrim Study in which 80% of hypos were avoided during exercise. The remaining 20% were due to levels that were dropping at a very fast rate which resulted in the persons blood glucose levels hitting their low threshold marker.
This brings me to alarms and vibrations.
In the situation Mike mentioned above, alarms will be set off by the pump to alert a person that they are heading towards, or have reached, their low glucose threshold,
therefore hopefully alerting someone else to the unconscious person. It’s a
scary reality, but something that we do need to think about as people with
The alarms can be turned off though! If
you’re sitting in a meeting or your child is in assembly, or if you just want
to sleep the whole night through (and you’re other half too!) the low and high threshold
alarms can be turned off to avoid that beep beep beeping. The person using the 640G can turn the
alarm off themselves, but this doesn’t mean that the low or high thresholds will be
turned off. It just means that if a person is heading for a hypo then the pump
will deal with it without alarming. If a person turns off the hyper alarm then the pump will not be able to do anything about the levels heading up. Sounds a little scary doesn’t it… Turning off the alerts and letting a device do its thing... but as @LwSweetpea88 pointed out – It’s hard to trust new technology, but you don’t know what it will be like until you’ve tried it.
A few quick bits about the MiniMed 640G
It will be available in the UK, Sweden, Denmark and Australia – I believe
it will be launched in early February (the 2nd)
It’s licensed for use by children
needs a calibration at least every 12 hours
sensor life is 6 days
person decided to restart the sensor past the 6 days then it may well result in
a calibration error – if the sensor has 2 calibration errors then it will stop
Low level auto-suspend had a minimum suspend time of 30 minutes
delivery will only be turned back on when the trending arrows on the receiver are pointing up (meaning that glucose levels are rising sufficiently)
are a choice of high and low alarms
is an alarm if the user’s blood glucose levels do hit the low threshold (though
the aim of SmartGuard is to avoid hitting this threshold)
pump has a bolus wizard, the blood glucose meter does not
blood glucose meter can tell the pump to deliver manual insulin doses (decided by the person using it) or pre-set
doses - e.g. 2 or 4 units
The pumps come in cool colours (and I think look a little like iPods)
not too big and not too small – comes with a clip and you can also buy Lenny
the Lion rubber protective cases for it!
The pump has a colour display screen
The display on the pump has colour coded icons which let the user know if they are
running low – e.g. the battery will be green, amber or red depending on how
much battery is left
is a lovely size (really important for me as my retinopathy means I’m always
squinting at my tiny pump screen)
Both pump and CGM are waterproof
The system uses the Enlite sensor & guardian link transmitter (the transmitter has been improved - so we were told)
The pump has a 'back' navigation button! This may seem like a small detail but my current pump does not have this, meaning I have to scroll through all options if I miss the option that I want
5 basal settings can be used, temporary basal rates can be set and the pump has options for bolus doses to be delivered in different ways (e.g. dual wave)
The pump does not need to be used with CGM - It can be used as a stand alone insulin pump (obviously this will leave the user without the option of the low and high thresholds, alerts and CGM trace etc)
CGM data can be uploaded via Medtronic's software package, CareLink, and sent to your diabetes team
People will be able to purchase supplies through Medtronic's e-shop
Something I haven't mentioned is price... and that's because I don't know it. I did ask the question and I was told that it wasn't a huge step away from the Veo and enlite sensors as a combination, but we will have to wait for more information on that one.
That brings me to the end of the scribbled notes that I took during the meeting... I suppose the only question I need to ask myself based on what I saw and know is would I use it?
My answer (if self-funding and CCGs didn't have any influence over my decision) is yes, without a doubt! I'm fed up of waking during the night with low glucose, worrying about what my levels are doing and if I'm going to need to treat a hypo during a meeting or whilst I'm on placement. I'm fed of of the growing fear that one day I might need an ambulance call out or that my driving licence might be taken away from me, that I might end up in a dangerous situation due to my diabetes. I'm also bloody fed up with my constant battle with hypos and exercise! But that's a whole other story.
I hope this blog has been useful to you... I'm aware that I have been using notes to write much of this blog but I hope what I have said is accurate. I'm sure Medtronic will be releasing more information soon, but until then please feel free to share this with anyone who might be interested!