What I think it would be like.......

Shiloh
I wake up, mums beside me beaming at me telling me she loves me kissing my face all over. She tells me that I did a good job. I have no idea why she is saying it other than her just loving me.

Mum
I wake up at around 7am after a night of checking on our little daughter making sure her blood sugar levels are ok. She is still asleep after having no idea that we gave her the needle in changing her insulin pump site over and removing the old one. I know that if we do it when she wakes then we will have arguments and tears that breaks my heart every time. My husband has gone to work again and I know it is now my responsibility to make sure she is ok for the day.

She is starting to stir. I bring her in close as I love her to the moon and back and I want to make sure nothing hurts her. With a gentle kiss to the forehead she wakes and I congratulate her telling her that she is great and has done a good job. Her levels have been good all night and she has woken up safe and happy. This starts my day with the first part of releif.

Shiloh
I am up and today I want to play on the trampoline. I run into Lucy's room cause she has to play with me. I wake her up and tell her. She says "no I don't want to" and I reply by yelling "MUM, DAD LUCY WON"T PLAY WITH ME!" mum and dad will fix this. she will play with me and play with me now. After a quick response Lucy is now on her way down to the trampoline.

Jump, Jump, Jump, hit Lucy and jump on her.... Oh no Indy wants to jump with us and she is now running all over the place. She is a cute dog but I want to jump. BEEP BEEP BEEP..... "MUM MY PUMP IS BEEPING" "MUM MY PUMP IS BEEPING" Jump, jump, jump oh no I mum has come down and I have to stop as she wants to check my pump. "Mum What am I?" Mum tells me that I am low and I need some sugar. I don't want to stop but mum came prepared and gives me my juice. I quickly drink all my juice and back to playing.

Mum
Ok time to clean up a little... wait I can't see her is she ok? Am I able to get to her if there is a problem? Ok I can see her she is jumping and playing with her sisters. Now that she is doing extra activity then she may go low so I will have to be on my guard waiting just to see what happens. She was in the 8's before going to play and she has eaten breakfast so she should be ok. Now on with the cleaning..... "MUM MY PUMP IS BEEPING... MUM MY PUMP IS BEEPING" I hear it and before I know it I reach for the handy fruit juice. I walk out to the backyard and still see that she is jumping and when she sees me she stops screaming that the pump is going off. I have either misjudged the breakfast carb count and she is rising too high or the activity has dropped her and the Smart Guard is in action and predicting a low. I get to the trampoline and she comes over holding out her pump while still talking to her sisters and eager to jump back in. As feared the beeps are from a low so I give her the juice and she quickly slams it down.
She is so happy and eager and has no idea other than her pump beeped and she has to tell me when that happens. She is a smart girl and she knows that something is wrong but just not what it truly means.

Shiloh
Oh I am hungry I think I will get some food. "MUM i'm hungry can I have food?"

Mum
"Food you only just ate" oh wait she just had a low she is on the way back up and her body is striving to replenish the lack of energy that was just burnt. I will give her some ham and strawberries. That way she will get some energy and some free foods. I hope she won't eat me out of house and home.

Shiloh
Yum yum bacon and strawberries.... Mum can I watch Tinkerbell?

The day goes on and the things that everyone needs to do while still having a permanent part of your brain focusing on T1D. Being 4 Y/O Shiloh understands some words and understands that to eat something she needs us to press some buttons on her pump but before she eats. She really doesn't understand why and what would happen if we didn't focus on it. She has no idea what carbs are and what amount of them are in each of the foods. I suppose as she grows we want to make sure she is a little girl first with T1D rather than focusing her whole life on T1D and trying to live life around it.

As she grows the leanings and responsibility will be transferred from us to her which will be difficult however it will have to happen but unlike me I want to ensure she doesn't grow up too quickly. This disease has the ability to take your childhood away if your not careful.

Is it the school or the teacher that matters?

This post is nothing to do with education as I believe that when you have a young child with T1D their safety and your sanity with allowing someone else to have control over your little ones life is the first thing you think about. I also should say that this isn't a education blog.....

Anyway our T1DD turned 4 years old this year and as you know 4 means the start of the official schooling program. After living and breathing everything T1D for the last year and a half just making sure everyone wakes up in the morning you can imagine how our heart rate started to run when the thought of having a teacher who probably has no history with T1D not to mention having another 20 children to manage.

My wife and I both knew, well I knew it had to happen and my wife didn't want to allow it to happen but we started with taking a look around our area for kindergarten's that had availability to school our daughter. After trawling through a number of them and realising that it would be difficult to find somewhere to not only school our daughter but to take on the responsibility of managing her T1D.

We gave up on the traditional stand alone kinder and went to a privately run day care centre that also had a kinder program. To our surprise when we enquired and were expecting a lot of questions about what T1D is we were met with one of the carers saying that she was T1 also. I could feel my wives heart rate lessen but what she didn't take into account was that as they were a private day care centre the fees would equal $87 a day and the food provided by the centre would not be ok as the training process to get the teachers to understand carbohydrate counting would take a very long time. Much longer than we had. We left thinking that this could be our only option and put her on the waiting list for the following year.

A month or so later, unexpectedly, we received a call from the very first kinder that we applied for informing us that a position had become available. We reconfirmed again before accepting that they were happy with learning how to manage our daughters T1D and they said that they were more than happy to learn all they needed to. A rush of relief and gratefulness washed over us and we assured the director and teacher that we would provide all the training and support that we possibly could to make sure that this was going to be a success. We also ensured that both my wife and I would be on call for any questions no matter when. All we wanted was for the teacher to feel comfortable with knowing all she needed to about the management of our precious little girl.

Knowing that I have a wealth of practical knowledge that I can pass onto the teacher we had to get the fundamentals done first so we organised our daughters diabetes educator to come into the school before the start of term and go through what Type 1 diabetes was, what the processes were for treating highs and lows, what carbohydrates are and what effects that have to blood sugar levels. As this was the first session the fundamentals were enough to try and take on board. The next stage was to start the process of teaching about the specifics about how we manage our daughters T1D.

Luckily just weeks earlier we started on the new Medtronic 640g insulin pump. To say that the difference between the usability on the older Veo model and the 640g is worlds apart is an understatement. Once you know the key words like bolus and basal it is as easy as following the instructions to work the functions on the pump. The home screen gives you all the necessary information to make decisions quickly. This is extremely important when you think that there are another 20 children in the class that still needs the attention of the teacher.

Now combined with the integrated CGM system with the SmartGuard technology this is the piece that allows us to sleep at night and also allows us to know while running and playing or playing play-do or learning your ABC's we can be assured that the pump will stop well before it becomes dangerous. Now we began by telling our daughter that no matter what she was doing if her pump alarmed then she was to stop and tell her teacher so that the appropriate action can be taken. Unfortunately due to kids being kids and not wanting to stop what they are doing she decided to ignore the alarms for the first week or so but with reinforced messaging from both the teacher and ourselves she understood the importance of making herself known in the sea of children as it is her life and health that comes first. Even more importantly with her making sure the teacher know that something was happening she and the teacher are able to talk to the other children in the class about what the pump is and why she has to test her blood and why she had to count her food. These chats and education for the kids in the class now see each and every one of them looking out for her and my wife has now walked in numerous times to one of our daughters friends running up to her saying that her pump was going off and she needed some sugar. Some great awareness starting early on all hoping that a small amount sticks and will make a difference in the future.

So to go back to the initial question is it the school or teacher that matters and I honestly do believe that general knowledge can be taught but it takes a special person to be able to go our of their way to go above and beyond their daily duty so to put it simply in this instance the teacher has made all the difference.

Being alone can be scary

So it isn't often that I am scared but unfortunately I had a moment that actually scared me greater than any horror movie could and I honestly believe that if it wasn't for the little device that sits on my hip 24x7 then I wouldn't be able to tell this story today.

So in my job every now and again I have to leave my family and travel interstate to attend meetings and conferences. I know what your thinking, tough life being able to fly around the country stay at nice hotels and eat at nice restaurants at the company's expense, and your right it isn't tough however when traveling with T1D is can be easy or it can scare the hell out of you.

In this instance I was staying in Melbourne alone in my hotel room and it was the first night of a 4 night stay. I and my colleagues had been out for a quick bite to eat and I had also had a pear cider which went down really well. I calculated the carb intake and bolused for what I thought I needed. Something that I have done day in and out for the last 9 years. Everything seemed to be going fine and I retired to my room to ensure I got a decent sleep before the big conference started in the morning.

As always I checked my BGL both on the CGM that I wear and also do a blood test. Both were about the same and was in the 8's which is perfectly normal. I also check to see if there was significant insulin on board as if there was I would have to be wary of what may happen in an hour or so if my BGL was to drop. Once again nothing out of the ordinary. I prepared for be and for the following day.

Now I didn't know the time during the next event however I look back and  realize it must have been around 4am but I woke to sever alarms and vibrations from my 640g insulin pump that was running the SMARTguard technology that predict lows from happening and shuts down the pump. I had obviously been having a drastic low in my sleep and missed the meek and mild alarms that note that something is going wrong. I remember I woke hallucinating that someone was in my room and yet I couldn't move in my bed for some reason. After what seemed like hours but was probably only minutes of trying to work out what was real and what wasn't I was able to get up and stumble around the small room. I do note that in the beginning I continued to hallucinate and dream to an extent because (and I recounted this to my friend later that morning) that he had broken into my room and for some reason I had been able to force open my sliding door and force him out and almost push him off the balcony. I know scary huh???

After coming back to reality and the alarms continuing to sound I finally realized what was happening. I was having a severe night time hypo. My 640g had predicted that I was going low and had suspended delivery of insulin of my pump when I was in the 6 mmol's. Now what happens with the prediction because your body still processes what you have the prediction software shortens the curve of the low but can't stop it all together. With out the device alarming and doing its job perfectly I would envisage one of 2 things happening that night -

1. The night time hypo would have continued  and the drop would have been even more sever and an ambulance would have been needed to ensure I was ok and awake
2. And this is the scary one. I don't think I would have survived and never have awaken again.

This sound melodramatic to someone that doesn't live with this disease but I can tell you those that live with or lives around this disease knows that people still die from the complications of T1D and the unknown piece that a lot of general people don't know is that a lot of the death that occur is at night when you have no idea it is happening.

I thank god that a company that I have trusted my life to for many years with their technology on my side have created the 640g which allows you flexibility and security so that life can continue.

What would I tell my younger self....

This is actually a difficult question and one that I have been thinking about for weeks now. It is difficult as if it was possible  you would have to be careful not to give too much information that you would stop yourself from living but enough information that could make life easier and safer.

Over 25 years living with T1D I have done some stupid stuff and I am now doing things that I am very proud of and they are the type of things I wish I could have done right from the start.

• I have not tested for days on end through my teens,
• I have gone out on binges with no one around knowing the dangers of what it could mean if I were to have a severe low or high while passed out,
• I have argued and not listened to family and doctors when in hindsight I know they were trying to make sure I was doing all the right things,
• I have never missed an injection. Even though I didn't test I knew that insulin was my saviour,
• I started writing this blog. Even though it is only my thoughts on a page and the details of a life so far with T1D it has allowed me to reflect on what it actually means to have T1D and how things continually change,
• I haven't been afraid to do what I have wanted to do,
• I have seen GP's and specialists come and go. All of which had their own ideas on what would be best and to tell you the truth not many of them have asked what I think (must be because I only lived this disease rather than study it for a few years)
• I have started a family with the naïve thought that since I was the only one in my family to ever have T1D then I would hold that to myself and no one else would have to bare the responsibility that this disease forces on you
• I have begun to try and teach my youngest daughter, who developed T1D in 2013, that T1D is going to be with her for a long time and even though she doesn't know why we do the things we do we do them for her benefit and out of the most loving part of our heart
• I have finally realized that even though there are more communication methods in which we can all use living with T1D can still be a very lonely disease to live with
• I have seen that I am not the only one living the injections, calculations, fear and happiness day in day out. We are still a minority in a very large world however we are not alone
• I have struggled to get medication  and supplies having to sacrifice other things to ensure that the things that keep us alive are available
• I have been lucky that I finally found a Endo who understood me and put me on the path to pumping. Something that I will never regret
• I have the joy of being an Ambassador for a world leading company who is making life easier and safer for all T1D's willing to make a change and have a little device attached to them 24x7. It really is the smallest of concerns when you see the benefit to living that it gives
• I have been able to tell my story to small groups and to large groups all in the hope that I am able to help educate people that there are different types of Diabetes and it isn't just a case of not eating sugar
• I have a pump and technology now that will not only deliver the life saving hormone that my immune system sort out and destroyed but it also has the smarts to be able save my life. If you don't know what I am talking about it is the Medtronic 640g with Smartguard.

I suppose this list could go on forever however when looking back I think I would tell my younger self to be who I am but to respect T1D. It is something that will be a part of you for the rest of your life and as much as you have days where it will take centre stage it is something that you learn to live around and it shouldn't stop you from doing what you need and want to do. Oh and get into helping others realize that their not alone a lot earlier than I have.   

MDI through to 640g - The changes I strive for

I sometimes sit and reflect on the changes that have occurred over the last 25 years and there has bee only a few times over that period where the control of my T1D has become enhanced and the way I felt directly relates to the management method.


On MDI, I lived and I had control but I never felt as though I was in control. There were so many unknown's. For example over night and even during the day you have an insulin that releases throughout a 12 hour period. As well created as the insulin is it is extremely difficult (if not impossible) to fit the release times to what the natural body needs.. I would have half of my long acting insulin at night before bed and half in the morning. Unfortunately my body didn't need a standard flat line of insulin and I would have highs and lows through out the day and night. The way that those highs and lows would make you feel is just a constant level of tiredness and even cloudiness.  It would be difficult to get out of bed because of the dawn phenomenon.


From here, and probably the first time in 16 years I felt I had control by moving from MDI to a pump. This allowed for the variable rates of insulin to be set and changed for what my body needs. It also allowed me to give insulin for the food I ate rather than feed the insulin I gave myself. This in itself is a major change and advance that saw you be able to make choices around eating and even missing a meal in specific circumstances. I remember the thought of being able to sleep in and not to have to worry about getting up at a specific time to give my injection and to eat. The pump gave me the ability for be flexible, change the way I was living, and start to take control of what was happening to me each and every day. As much as you can say that even on MDI that this is possible I felt from a mental point of view that the pump allowed me to cope and really understand cause and effect and give me the means to change.


Through out the early days of being on a pump my Endo informed me that they had a device that could monitor your blood sugar on a regular basis (every 5 mins) and then at the end of a few days it could be taken off and downloaded to see the peaks and troughs of how the insulin settings were preforming. This was another tool that allowed greater confidence in my life with T1D. It was well and truly something that I could only use on a vary rare occasion to check how things were going and make some adjustments but it was another step in control.


If all of this isn't enough I then started on a journey were we were introduced to the Medtronic 640g pump. Fundamentally it has the same functions as my previous 2 pumps however this would see the first real step into automation.


Let me set the scene before I go any further, I like to have tight control and I like my HBa1C to be between 5.5 and 6.9. To be able to do this unfortunately I was having a number of lows through out the day. Some days I would wake up low and other days it would happen in the middle of the day. Now when I say lows this is when my BGL goes into the 2's. I can manage and get through high 3's and 4's without any effect (and yes it meant treating) but the 2's would make a difference and I will go into that later. The lows were not welcome however I needed the control and after having T1 for 25 years it had been working well and I have no other complications due to T1D (I am tapping wood right now as I say this).


Anyway back to it, yes fundamentally it was the same however combined with a Continual Glucose Monitor it now had the ability to predict a low and shut the pump off so that you change the curve of the low and stop the serious lows from happening. As with all technology it would take time to trust that what they were saying was in fact true however after only a day or so where both my daughter and I stopped having any lows in the 2's it was the next stage in my life that significant changes have had a dramatic effect on the way I feel and the way we can have confidence that both my daughter and I will be safe.


Without the 2's that I was having I finally realized the effect that they were having on me. Thinking would become easier and the tiredness would ease. I realized that for hours after a low the cloudiness within the brain would act like a dulling agent when trying to process everything. With the 640g and without the lows the fog was lifted. This is not to say the going into the 2's is impossible because it just isn't. You can still miss calculate and you can make mistakes however the frequency of this happening is dramatically less for both me and my daughter.


The other thing that helped in making this change is that the pump moved from being a simple medical device that would be difficult for everyone to understand and operate to a device that almost acts like a user friendly device that you need to know just a few key words and then follow the directions that it gives you. We put this into practice when training my daughters Kinder teacher who had never had any exposure to T1D at all. After a 2 hour basic session with our diabetic educator to understand what it was and what it meant if it wasn't managed we then introduced the pump. Reponses from the teacher and the assistant was that it was easy to see what is happening at any one time and that they had confidence that managing our daughter's condition would be simpler knowing that this pump was in place. We would continue to hold the teachers hands over the coming weeks however that is always going to happen. We send our daughter to kinder now knowing that the pump will alert people if there is a problem and that we can rest assured that things will be ok and she will be home at the end of the day having a great time at kinder.


This has been a unexpected change that is extremely welcomed because the quality of life has and will continue to get better. I know it isn't the last change that I will see a however while on this journey I am now dedicated to finding the solutions that will make my life and my daughters life better.


Here's to the next 10 years and beyond.

Sorry or not Sorry

Type one diabetes is a disease that has so many components that have the possibility to either make the day run smoothly or can put a complete spanner in the works. Along with these components that can make or break you then look at the human elements.


For the last year and a half we have been keeping a brave face for our 3 year old daughter as we disconnect her pump and begin the process of what we call a 1,2,3 (For the technical explanation we are doing her change of site and reservoir in her pump. Yes this means a needle). In the beginning she would not link the disconnection of the pump and the change but as time has progressed her awareness has also become in tune with what is happening.


It began with the advice of talking her through the situation and asking her to try and understand. We also tried the sneak approach. Not that she doesn't know it is happening but to draw up the new reservoir and then only bring it to her attention when it is time to actually do the injection. Incorporating all of these methods and others it always comes down to the same scenario - A young little lady drenched in tears and pleading that we don't do the 1,2,3.


Heart breaking to the strongest person to a mother and father that can not be openly sorry for having to hold her still long enough to safely have the new infusion site inserted and in place so that the continued insulin delivery could be in place.


Internally we are sorry that she has to deal with this disease and I am sorry that there is even a smallest possibility that the genetics that I have could be passed down. On the outside we can't be sorry for holding her still to give her the injection because we can't be sorry for keeping her alive cause we aren't. One day we will get her to understand that all we do is to manage the disease and give her the longest and best life possible.


After the storm that is the process of doing a set change our daughter comes back and tells us how much she loves us and the process is forgotten. Well for the next 2 days or when we need to do the sensor change.

The new Medtronic 640g - A few days into the journey

I have looked at the pictures, I have played with the test devices, I have read the training on what can be possible for both me and my daughter and finally the day came where my daughter and I get our new pumps.

To say the process of getting the pumps has been arduous would be a lie. We have had to do very little paperwork, we haven't had to deal with the health insurance company and ultimately with the help of the pump company and our Diabetes Educator all we really had to do was to turn up for the appointment.

So in our pack we got our new

• 640g pump. Pink for my daughter and purple for me (I have had the charcoal and the blue so purple was the next option).
• Our new Bayer contour meter. Thank goodness that it allows for a second go of applying enough blood. So many strips have been wasted over the last 3 years with not enough blood. This meter also acts as the remote control for the pump and also the USB dongle for downloading the pump to the Carelink system.
• Our next generation CGM transmitter. Instead of having a delay in getting accurate results for the first 12 hours as soon as I had connected and calibrated for the first time it was within 1 mmol and it has now been going for 4 days with little to no variance against my meters results. To say that I am very impressed is an understatement.

I began the training with our educator and she had to hold me back from jumping ahead of her in getting it set up. The screens were so easy to navigate and understand that each process and menu made sense and was easy to move through.

All the settings were done and explained, including the new predictive technology that will not only suspend the pump when it is looking that you will head towards a hypo but also restart again when your heading out and also alert when it is predicted that your heading towards the high limit that was set. This process was completed and done all within an hour and I was connected and ready to start.

Of course I had to wait the standard 2 hours before the sensor would kick in but that is expected.

Next was to take my wife through the process with our daughters pump. I have had 25 years now of experience however my wife has only had one of being a parent of a T1 child. She had done wonderfully well grasping and understanding all that is required and the process with the new pump was nothing different. I think she had just gotten through and felt fully confident with the last one however she went through the training and to tell you the truth if I had a dollar for every time I heard "WOW that is so easy and SMART" while she was setting it up I would have over a thousand dollars. All the aspects that she understood about the old VIO pump were made even simpler to understand and navigate. They were also enhanced to give us confidence that our daughter would be in great hands.

The whole setup process was now complete and we were on our way with new pumps and technology on our hips. 

One the way home the new sound of the pump sounded asking for a BG to begin calibration for the CGM. I did my test which was in the mid 4's. Once that happened 5 minutes later another new sound happened and I looked down and the pump told me that it had suspended automatically with the understanding that I was heading low. WOW, WOW, WOW this thing was on the ball right from the start. I found my glucose and had only a fraction of what I would if I was hypo and 10 mins later my pump sounded again. This time it was telling me that I was heading back into range and the basal pattern had been resumed. It is amazing to think that this technology is now available to us and has the ability to make our lives easier.

This process has happened a number of times over the last 4 days and my daughter has not been under 4 in that whole time. During the night we are able to sleep knowing that we will have notification if anything was heading in the wrong direction and that it will slow down or stop a hypo from coming. Of course in extreme circumstances where you over bolus or make an error it is still possible but in everyday scenarios we are looking to a very positive future.

If you do want to know more then take a look at www.medtronic-diabetes.com.au it really is amazing.