Fear of Lows?

I’ll be the first person to put my hand up and say that I don’t like having lows. I mean, who does? It’s not fun having to push through a work day while chewing down glucose tabs that taste absolutely revolting after years of treating my hypos with exactly the same thing. It’s not fun waking up in the middle of the night drenched in sweat, pulse racing and feeling scared out of my wits. It’s not fun thinking about the potential of developing hypo unawareness, and I absolutely hope that I’m doing enough to minimise its impact on my brain.

But for the most part, these are all relatively isolated occurrences. Lows genuinely don’t concern me. Perhaps that statement comes from a position of privilege. I am lucky enough to have access to and motivation to use great blood glucose monitoring equipment. I have never experienced a hypo where I’ve required assistance, and I feel that I still have reasonable hypo awareness. While hypos may be a part of living with diabetes, they definitely don’t dominate the agenda of my diabetes.

A low can be quickly fixed, and in most cases, pre-emptively treated with the glucose tabs that I always have on me. But in some ways, I know that it won’t be that easy to fix some of the longer term conditions that may arise as a consequence of living with diabetes. So if I am being completely honest here, I am far more concerned about the impact of the higher blood sugar levels on my body than the lows.

I think that’s why, time and time again, I find it so difficult to cope with healthcare professionals’ extraordinary concern around lows. I was somewhat reminded of this last week as I was listening to a local endo talk about hypoglycaemia in her practice.

I don’t mean to say that I don’t appreciate these concerns, or that hypoglycaemia isn’t something to be concerned about. Because there’s definitely a correlation between hypoglycaemia and quality of life. Yet when I see such extraordinary concern around lows, I simply feel that healthcare professionals don’t get that highs aren’t exactly ideal either.

I’m left to manage diabetes on my own for the other 364 days of the year that I’m away from diabetes clinic. I have to make hundreds of decisions each week on my own just to keep my head above water. I feel that sometimes they don’t get just how much of a personal stake is involved in these decisions.

After almost a decade of living with diabetes, lows don’t feel extraordinary. They’re pretty ordinary.

Reintroduction.

I take absolutely no credit for this idea. But I have seen it going through Instagram, and I thought it might be a good time to re-introduce myself to those of you who might be new around here.

I’m Frank. I’m from Perth in Western Australia, and I’ve lived with type 1 diabetes for the past nine years. I presented to my GP with all four ‘Ts’ of type 1 diabetes – tired, toilet, thirsty and thinner – but wound up in emergency a few days later with DKA.

The hardest thing about being diagnosed at that age was trying to find a place for diabetes in my life. I lived in relative isolation for those first couple of years. I kept diabetes to myself as much as I could, and didn’t really feel motivated to learn more about it.

My turning point came in 2015 when I created a Twitter account and accidentally stumbled across the Diabetes Online Community. For the first time in my life, I saw other people candidly sharing and talking about diabetes in a normal light. I’ve also been lucky enough for the opportunity to turn many of those online friendships into in-real-life ones over the past couple of years.

Peer support is my vice. I could talk for hours and hours on end about how valuable and life changing diabetes peer support is. It definitely played a big part in better engaging myself in my diabetes management. I’m also incredibly proud to be part of a Young Adult Diabetes Committee here in Perth, because this incredibly bright group and their mission definitely fulfils what the diabetes community has done for me over the past few years.

I’m currently using a t:slim insulin pump, and it’s honestly been everything that I’ve wanted in a pump for a long time. I monitor my blood sugars with an AccuChek Guide, and intermittently use a FreeStyle Libre. I don’t really follow any particular kind of diet. I eat to meet my energy expenditure, prepare as much of my food at home and focus on ‘real’ food. I’m always on the hunt for good coffee and cakes or pastries. Especially Cannoli.

Diabetes is hard work. If there’s one thing that I could draw upon from my own experience, it would be to monitor your blood sugar as closely as possible and commit to learning about how it responds to different variables and activities. Arm yourself with as much information as you can about managing diabetes, and find what works best for you. (I personally can’t speak highly enough of Think Like a Pancreas by Gary Scheiner).

I currently work as a back of house attendant for a retail business. I honestly cannot wait for the day where I’m not on my feet all day burning energy, and I might actually feel motivated to complete some feat of physical endurance. I’m currently studying Accounting at Curtin University. I really hope that I’ll be able to use that degree to make my mark on the world somehow in the future (and earn a bit more money to pay for my health care).

I love being outdoors, and recently ticked the incredible Blue Mountains off my bucket list.

I prefer TV shows over movies. If you haven’t picked up on the references scattered throughout this blog of late, I’m absolutely hooked on Australian Survivor at the moment. Also looking forward to the Downton Abbey movie and season 3 of The Crown.

If you’re new here, or if you’ve been reading my blog for a while, I just wanted to say thank you. Whether its been through a comment, social media interaction or a real life friendship, the diabetes community continues to make the great big world around me much much smaller.

Roche Solo Tubeless Patch Pump Launches in Australia

One of the most unsurprising announcements made at the Australasian Diabetes Congress was the launch of the Roche Solo insulin pump, following its TGA approval several months ago.

The Solo is the latest tubeless patch pump to hit the market here in Australia. Hopefully with the backing of Roche, it’ll be here to stay a lot longer than the late Cellnovo. We were told that subsidised consumables are expected to be listed on the NDSS in November.

The primary reason patch pumps have been so slow to hit the market here in Australia is due to the model of funding, whereby private health insurance pays for the durable component (the pump) and the NDSS pays for the consumables. Last year, Ypsomed explained that this was the reason that they were unable to launch the Omnipod on the market here, despite it receiving TGA approval many years ago. Unlike the Omnipod, the Solo has both durable and disposable components.

The pump base is the durable component, lasting up to four months. My understanding is that consumers would apply for a 12 month supply of pump bases at a time from their health insurer, perhaps due to the perishability of batches (in similar fashion to sensors). What wasn’t made clear is whether the user would be free to switch to another insulin pump after they had used the initial 12 month supply, or whether they would need to commit to a full four years of the Solo.

Like other insulin pumps, the disposable components include a cannula and reservoir. I believe that there are only 90 degree options in cannulae, but there are options for manual insertion if desired. The reservoir can hold between 80 and 200 units, and can be used for up to four days or until the battery dies. The reservoir also contains a battery, which is apparently very environmentally friendly! I believe that the reservoir connects into the pump base as shown here.

A pump holder is a third disposable component of the Solo, allowing for the pump base to be clipped on and off from the infusion set as needed. We were told that the pump needs to be disconnected from the infusion site for water activities.

There’s a diabetes manager which allows the user to control pump settings remotely. It also has a test strip port which supports AccuChek Performa strips, if memory serves correct. There are also two buttons on the pump base, which allows the user to deliver a bolus if they don’t have their diabetes manager around.

Personally, patch pumps scare me. I have seen a lot of ‘pod failures’ from Omnipod users within the DOC. I don’t like the idea of not being able to see what’s happening underneath the pod to detect a site or insulin delivery issue. Nor the fact that the reservoir and site are in one, meaning that the whole thing needs to be discarded should the something fail before its time is up.

The Solo looked far more encouraging. I liked that the reservoir was separate from the infusion site, meaning that one could be changed without affecting the other. It also means that you can inspect your infusion sets by simply removing the pump base from the infusion site. The remote diabetes manager, which is also a feature of the AccuChek Combo pump, looks fantastic and I’d love to more interoperability on the market.

More choice is always a good thing for people with diabetes. There are heaps of people who aren’t pumping because they don’t like attachment (and equally, because they are more than happy on MDI). While I’d be inclined to say that this is an option that might have people reconsider insulin pump therapy, I’m sure that the recent exit of Cellnovo has probably lost a lot of faith in the patch pump market. Hopefully, in time, the Solo might be able to restore some of that faith in the patch pump market.

On a final note, I only spent 30 minutes with this pump while frantically Tweeting out a lot of information during a breakaway session at the ADC. I’d suggest you visit the AccuChek website or speak to someone from Roche Diabetes Care if you want to be sure of anything I’ve written here.

Disclosures: Diabetes Australia covered my travel, registration, some meals and three nights accommodation in Sydney to attend the Australasian Diabetes Congress. I gave up my own time to attend, and am sharing my own thoughts, as always. Roche also supplied morning tea during a breakaway session on the Solo at the ADC.

Solutions To Fit the Needs of the Individual

Undoubtedly the biggest issue that stuck out to me from the Australasian Diabetes Congress was the difficulty of managing diabetes among teenagers and young adults.

Continuous Glucose Monitoring has been fully subsidised for people under the age of 21 in Australia since April 2017. Yet in Friday’s tech symposium, one presentation in particular highlighted high drop out rates of CGM among youth. Of the 115 or so research participants who were using CGM at the commencement of the study, only 44 were still using the technology six months later. Underlying reasons hinted at the technology being a barrier to kids fitting in with their peers, particularly in social settings such as playing sports. Many also didn’t like the attachment to ‘another’ device.

It was also pretty evident in presentation after presentation that teens and early 20s were the age brackets where diabetes was the most difficult to manage. Researchers suggested that young adulthood was associated significant life changes and challenges such as university, work and moving out of home to name a few.

To be completely honest, I don’t like hearing the (repetitive) argument that the government should subsidise technology for everyone because it will keep people out of hospitals and save lives and reduce the economic impact of diabetes on the health system. I don’t have a doubt that technology has improved the quality of my life and my ability to manage my own diabetes more effectively. However if there’s one thing that was astoundingly clear from this presentation, it’s that there are a multitude of factors in play beyond the tech alone that are contributing towards diabetes outcomes.

Models of care would be a pretty big one. I’ve heard on good authority that a lot of people slip through the cracks in the transition from paediatric to adult care. Many of us adopt approaches toward managing diabetes that might not be ‘textbook,’ but they make sense to us based on countless hours of lived experience. We need a healthcare system that supports us in those decisions, and doesn’t scare us away. The impact of the attitudes and language used by our healthcare professionals cannot be underestimated. My first endocrinologist told me that I had very poor control over my diabetes mere weeks after my diagnosis. That can be detrimental to a young person who is already feeling insecure about a new lifelong condition.

Let’s get controversial here. Nutrition. I don’t for a second believe that diet is a one-size-fits-all, but the nutrition advice we are being given is both vague and conflicting. I believe that we are all to blame for this one. Healthcare professionals, the media, d-grade celebrities and even the diabetes community. I personally wish that instead of demonising foods and food groups, we focussed on real food. Fruit, veg and plant based foods. Some protein. Learning to prepare as many of our meals at home. And not demonising those treat foods that I truly do enjoy, if I am that way inclined.

Instead of being instructed to only eat low glycemic index foods, it would have been helpful to have received some basic training around the fundamentals of insulin. It took me years to realise that insulin can take 15 minutes to start working after an injection, and that in some instances it may be helpful to give insulin prior to eating. Carbohydrate counting wasn’t a firm part of my diabetes education, nor was I told that I might need some insulin to cover a dinner of pork chops. A good basal and bolus regimen is paramount to effective diabetes management, and Gary Scheiner’s Think Like a Pancreas should be essential reading for every person with diabetes.

The consumer voice session that I was a part of earlier in the week also flagged the importance of having psycho-social support in diabetes care, whether that be through a psychologist or peer support from loved ones and fellow people with diabetes. I know for me personally, it’s that psycho-social support that has helped me to wear my diabetes on my sleeve. Its given me the confidence to be able to manage my diabetes in any kind of situation with ease.

I’d also like to wrap this up by saying that these are my humble suggestions as to what would have been helpful to me after my diagnosis at the age of 17. I don’t for a second pretend to know what it’s like to navigate diabetes as a kid, in a school setting among friends, or to be a parent navigating these situations. No judgement to anyone in these age groups. You are all amazing at what you do.

No two people with diabetes are the same. If there’s one thing that this session highlighted to me, it’s the need for solutions that fit the needs of each and every individual.

Disclosures: Diabetes Australia covered my flights, registration, three nights accommodation and some meals to attend the Australasian Diabetes Congress in Sydney. I gave up my own time to attend and am sharing my own thoughts here, as always.