There is a superhero in all of us, we just need the courage to put on the cape

In August 1984 my life changed forever, some might say it changed for the worse, but now some 34 years later I can see it changed for the better.

As a healthy, active 10-year-old, I was diagnosed with Type One Diabetes and back in the day (my 12-year-old would love me saying that, as he thinks I was born back in the dark ages) there were no pens, no pumps, no cure and not a lot of information or support for those newly diagnosed.

I often wonder how my parents felt, mum was also the one to carry on a bit and dad was always the common sense. I remember my first Christmas as a Type One and dad standing at my bedroom door watching me drawing up insulin into a syringe with tears in his eyes. He wasn’t an emotional man which is perhaps why this memory has stayed with me. I said to him, “it’s ok Dad, they don’t hurt, I don’t mind doing them on Christmas Day”. His response is perhaps that of all parents watching a child inject medication, “you shouldn’t have to do this any day”.

Information back in 1984 wasn’t at your fingertips, I had an endo who openly stated she hated dealing with Type One Diabetics and a Diabetic Educator who I’m almost sure parked her broom stick out the front of the hospital she had rooms in. It’s funny how memories of this time have affected the management of my Type One for the last 34 years!!!!

My first memory of Type One was Mum and Dad having to purchase a blood tester, which I’m sure for the time was the best of what was available. It was the size of a brick and took up most of my school bag every day, in its thick black leather case. It took over a minute to get a result and was messy to use. In fact, you had to wash the blood off the test strip with a small squeaky bottle. Now I own a blood tester the size of a 20-cent piece and get the result in less than 10 seconds!!!

    Past and the present

Now looking back, it seems odd how my Type One was managed. I was on one injection a day at first and then two, one of a morning and one of a night, and then things got really fancy. I was on a long and a short acting insulin mixed into the one syringe which took real skill as you had to draw them up and make sure they didn’t mix – if you got a bubble you had to start all over again!!! It was wild times in my Type One management and I’m certain it looked like a fancy cocktail I bought in bars later in life!!!!

BUT advancements and research where being made and the lovely lady with the broom stick as a form of transport, decided she wanted to try me on a new form of management – INSULIN PENS!!!! Actually, it was one silver pen that got dropped a lot, leaked more insulin than it injected and still somehow survived. And I remember being taken to a group information session and it being sold to mum and dad on better HB1C results. I was the first person in Tasmania to start on an insulin pen from hell!!! So, it was broken to me at the group information session that I would now be on 5 injections a day, not two, and I was dragged (I swear there was actually kicking and scream on my behalf) and used as the example of people that would benefit from this amazing advancement in Type One Management. I was told I was a non-compliant Type One and that my management was rubbish all in front of a group of about 20. When I look back this might have been the day I decided I wasn’t going to be told or put down by people who didn’t understand what it was like and somewhere in my head I thought I could and would control my Type One Diabetes. I was 13 years old at the time and over being “different”.

 

Needle’s to Pens

 

I guess what sticks in my mind from this time was being thrown into a new form of management, with no real training and a medical team that used me as a crash test dummy. It was a guessing game. The dosage of insulin was based off a slide chart, depending of my blood sugar level. It didn’t take into account, sport, running around at school during lunch, low and short acting carbs and certainly no thought was given to overnight lows… which sadly became a regular occurrence and resulted in many hospital visits. I remember lots of lows and a lot of HI’s, but not much in between. It was just a given, if I took part in sport that is would come with a low, and this is pretty much how life continued for the next 24 years. I felt helpless to control my condition, and through my teens and in to adult life, travelled with a chip on my shoulder about living with Type One Diabetes.
At certain points, insulin pump therapy was mentioned, but the Endo I had at the time didn’t know much about it and wasn’t a huge fan (isn’t that a bit like being a heart surgeon but not knowing anything about pacemakers?). In my head an insulin pump was a HUGE machine that would make me stand out as different to everyone else and I thought I was going just fine without one. But the truth was I was far from fine!!!!!
In 2005 I became pregnant with my son Lachlan (who is now 12). The effect this had on my Type One diabetes was debilitating, not only for me, but also for my ex-husband and our immediate family.
My Endocrinologist, John Burgess, had attempted to treat my Type One as “text book”, telling me that my blood sugars levels would rise and my insulin requirements increase as the pregnancy progress. Despite the fact that I had top level private health insurance, I was referred to the public clinic at Royal Hobart Hospital and was required to visit them at least once a week and phone in every two days for the Diabetic Educators to fine-tune insulin dosage. It became apparent to me fairly fast that they had neither the time or funding, to spend getting to know “my” Type One. Type One Diabetes is as individual as the person living with the condition. I was having hypo events multiple times a day and was becoming hypo unaware. At the time I was a senior manager and travelled for work. Early on in the pregnancy this became difficult as driving a vehicle was becoming a risk, to not only me but, other road users. Why? One minute I was fine, but because I had no way of knowing my blood sugars where dropping, it generally wasn’t until the last minute that I knew something was wrong.

The worst hypo events where taking place overnight, while I was asleep, which resulted in an ambulance being called at least 2-3 times a week during the pregnancy, as my husband couldn’t revive me. On many occasions, an ambulance was required and unfortunately this was happening so often my body wasn’t recovering, and more and more time was spent away from my workplace.
As a mum-to-be, my concern was for my unborn child. Upon raising this with my Endocrinologist, he informed me that, “the baby will be fine, think of it like a car with a passenger, if the car is involved in an accident, the passenger can be hurt or worse”. As a result of the stressful situation, with little help or advice being offered that could ease these hypo events, I lived in constant fear of leaving the house, and when alone would live in fear that a hypo would occur, costing me and my baby our lives.

Six years ago, I became a single mum of a then 7-year-old son. As with anyone in this position, it was a difficult time, and my main concern was making sure my son, Lachlan, was secure. At this time, I wasn’t caring too much for myself, let alone my Type One Diabetes, and began having debilitating hypo events, resulting in an ambulance having to be called anything up to three or four times a week by Lachlan. I had become completely hypo unaware, I would try and stay awake all night, so I could deal with the hypo myself or set alarms for every hour during the night, so I could test. I could see the effect my Type One was having on my son. I was at the point of expecting it was just going to kill me and that there was nothing that could be done. I would go to bed one night and not wake up.

 

 

Clearly my view on what an insulin pump looked like was about as far from the reality as you could get!!!

In August 2014, after 30 years of living with Type One Diabetes, my life changed forever and for the better. I began on a Medtronic Veo insulin pump, the colour of Cadbury Chocolate and small!!!! It was a big step for some who had hidden their Type One Diabetes from the world for most of their life.
Around this time, I was helping fundraise via my running and was training and running marathons. My first marathon was representing my state at the national marathon championships in Sydney. I finished thrilled that I had achieved something which had long been a dream, only to find my blood sugar levels to be 1.3ml and I was completely unaware and most likely only minutes from collapsing. I realised something had to change, for my wellbeing, but also for the wellbeing of my loved ones.
Through running I was introduced to another Type One diabetic who was also into running/biking and swimming silly distances. On our first meeting, we went for a run together. While running, we got to talk about diabetes and our background was very similar. He also has been at a point of accepting that one day it would take his life. He started telling me about how his life changed once he started on his insulin pump and how he was much happier and healthier with excellent HB1C results and that the stress of the diabetes was far less on his family. My instant reaction was, “I don’t want one of those, it’s always there on your side telling the world you are a type one diabetic”. I guess when I look back on it, I felt a pump would make me feel branded in some way. After 5k and an hour of chatting I was starting to warm to the idea of a pump and had so many questions, which Dave answered for me over the weeks that followed. I then decided it was time to make the next step and make an appointment at the pump clinic in Hobart to look into the idea further. Within a month, I was starting on my MiniMed Veo and the improvement was instant.

My HB1C (which is an average blood glucose level over quarter period) was down from 9 to 6.5 within a few months, I could sleep and my loved ones where far less stressed. I was then given the opportunity to trial a Continuous Glucose Monitoring system (CGM).
Since commencing pumping, I have never looked back. It has given my family and I our lives back. But it also gave me the drive to make sure others with type one know about this amazing technology and how it could benefit them, with outcomes with diabetes unheard of on multiple daily insulin injections. Importantly, not only the patient, but also their families benefit.

In October 2015, I ran another 205kms. I became a Patient Ambassador to Medtronic in Australia, with the Medtronic 640G and CGM, to showcase to other Type Ones that diabetes won’t stop you doing what you love and enjoying life, and to show just how amazing this technology is. It was great to see the pump and CGM doing the thinking for me and for the first time in 30 years I felt normal and as close to not having diabetes as I have ever felt.

The difference between the Veo and the 640G is like the difference between a Nokia Flip and an iPhone X. The Veo was a brilliant pump and taught me a lot about my Type One and pumping. It is also the reason I am alive today. But the 640G is amazing I don’t have to wait for an alarm to tell me I’m low, as the 640G takes action to avoid a hypo with its SmartGuard and Suspend Before Low features. This pump is the first step to Hybrid Close Loop, and I have the advantage that when the time finally comes for the much-anticipated next generation of insulin pump, I will have an advantage like I have never had before in my 34 years of living with Type One Diabetes…. I have the knowledge and the skills for the change to closed loop as a result of using the 640G. I trust my 640G with my life and I trust it to make decisions for me. That is one of the biggest things to get used to when you start using SmartGuard. After years of make the decisions, some good and some bad, the 640G took the guesswork out of my management. Even when I feel like “a day off”, it still has my back. So already, I have an advantage in learning the newer system when it becomes available. But one of the main things I love about the 640G/SmartGuard is that I don’t have to act on an alarm telling me I’m low, which I risk sleeping though. The 640G takes action to avoid the low completely. My hypos have reduced by up to 98% as a result of using the 640G and CGM, which is nothing short of brilliant. It has given me the courage to live my life to the fullest and remain in control of my Type One management. I have a sense of ownership over my Type One management, and that is something I have never had until commencing on the 640G.

 

 

 

deb