Insulin Pumps

Thursday Night, Diabetes Style

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When I last visited my diabetes educator in February, I brought my meter along in order to show her my numbers. I was stepping outside of my comfort zone. I was essentially exposing myself, and all of my highs and my lows. I wouldn’t be able to choose what I would share with her. I wouldn’t be able to summarise. It was a big step for me, but one that I felt ready to do.

Unfortunately, the focus seemed to be more on what I hadn’t done – logging my insulin doses into the meter. I apologised, and promised that I would send through two weeks worth of meter reports before my pump day, so that she would be able to work out insulin ratios and settings.

It was a simple task, yet one that has been weighing heavily on my mind for weeks.

Every time I have attempted to make a start, something gets in the way. In March, I got sick and was rage bolussing stubborn highs like crazy. A week later, Easter rolled around and I was eating more than I should have. I took some holidays, and the numbers didn’t reflect my regular routine. But most of the time, I’ve just been telling myself that the numbers aren’t perfect enough to send through.

I can probably guess what a healthcare professional might think. Lazy, slack, non-compliant (insert your favourite word here). But when diabetes already takes up so much of my time and energy, a simple task like stopping to log my insulin doses is a big deal. It’s hard to carry the same meter around with me, rather than rely on the others that are stashed in convenient places. It’s hard to stop and punch in the insulin dose, when all I really want to do is sit down and eat.

But I knew that I was going to honour my promise. I knew that I wasn’t going to lie.

Come Thursday night, I generated 14 days worth of Insulinx meter data on my computer and printed it out. I took a seat at my desk for what would be somewhat of a long night.

I went backwards, day by day, reflecting on the past two weeks of my diabetes life. Recalling exactly where I was, and what I was doing on that particular day. Thinking about what I’d had for dinner that night. Remembering the circumstances surrounding that stupid low, that stubborn high, or that victorious overnight result. It took me a few hours. It was a little confronting, staring at those numbers on paper and being reminded of where I had gone wrong.

I attached a note to my meter reports, apologising to my diabetes educator for not directly logging the insulin doses into the meter. I explained that I had thoroughly gone through my last two weeks, and provided what I believe to be a very comprehensive overview. I wrote notes about my typical day. A work day, where I was on my feet, moving around and lifting things. Night times, where I was often chasing post bedtime highs from things like Pasta, Fat and Protein foods. Insulin to carb ratios, correction ratios and Lantus doses.

I carefully folded my paperwork, placed it into an envelope and stuck an express stamp onto it.

As I placed my letter into the Post Box on Friday afternoon, that big weight that had been sitting on my shoulders for weeks was finally gone.

Saying ‘Yes’ To An Insulin Pump

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I’m a terrible decision maker. My family often laugh at how long it takes for me to decide what I’m going to have for lunch or what movie we should watch in the evening.

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Switching from Multiple Daily Injections to an Insulin Pump is arguably one of the biggest decisions I have made in my life. Thinking about the time, thought and research I put into that decision, I realise that this is one of the few instances where my meticulous decision making was worth it.

Thinking about an insulin pump? Although I’ve written a lot about this decision over the past few months, I really wanted to stress in one post just how big of a decision it was.

I never really thought too much about insulin pumps before I started my blog and made connections in the Diabetes Online Community. I thought that they were only for young children, or for people struggling with their diabetes. Seeing others share so openly about their lives with pumps, particularly those within the wonderful OzDOC community, motivated me to find out more.

I attended an information evening back in October that was hosted by Diabetes WA, the diabetes organisation in my state. The evening covered the basic concept of insulin pumping. Representatives from the pump companies were present to show us the devices themselves, and I was able to grab information packs to take home.

The downside of this session was that I found it a little too light and fluffy. I recall the host making the statement “very few people give these back to me and say they don’t like it.” The session brushed over the seriousness of pumping. The representatives from the pump companies were a little too pushy. I didn’t feel comfortable going over and talking to them, because I was only seeking information at the time. I wrote about that night in more detail here. I do wonder how many people were convinced into signing up for one straight away.

Following this session, I decided to get back in touch with my diabetes educator, Gwen. This was a big step for me, considering that I had not had a formal appointment with her in a few years. My nerves were instantly relieved, and Gwen picked up as if our last appointment was only yesterday. She covered the topic of insulin pumping comprehensively and with the seriousness it deserved. She never displayed any bias, and respected that the decision was mine to make. You can read more about our session here.

Gwen gave me the option of making the decision on that day back in November. I could have said yes then and there. I knew full well that the wait for the pump would be even longer if I went home that day and made the decision at our next appointment. I could have said the words “yes,” but I knew that I wouldn’t really be convinced. I fought my feelings of urgency, because I knew deep down that I wasn’t ready to make such a big decision. I went back home and talked about it. I read about it. I thought about it.

By the time I came back to see Gwen in February, I had a much clearer head.

By taking the time to say yes, I felt much more confidence in the decision I had made.

Let the countdown to the big day in May begin…

Stamp Of Approval

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“You want a pump, don’t you?” Gwen asked me in the hallway outside of her office on Monday afternoon.

“The doctor’s written here in your file that you’ve made up your mind and that you want a pump. Have you picked which one you want?” 

I knew which pump I wanted. It’s not like there was a huge choice to pick from, anyhow. I guess I was just a little surprised at how quickly things were moving. I honestly thought that I would have had to justify to Gwen why I wanted the pump.

“Right, I don’t think I have any of the Animas forms left,” Gwen replied as she hurried off towards Reception to retrieve paperwork for the Animas Vibe insulin pump that I’d picked.

We sat down in her office, where I was met with a stack of paperwork. We completed the order form for the pump itself. We completed forms to be sent off to my health insurer, who would be covering the cost of my pump. We completed forms to be signed off by the endo. We completed forms to be sent off to the NDSS, in order for me to be eligible to purchase subsidised pump consumables. We talked through order forms for the consumables that I will need to purchase prior to pump day. And we completed content forms so that everybody has permission to liaise with everybody throughout this whole loooonnnnnng process.

Gwen grabbed her diary from reception, flicking through pages in search of a block of free days for pump fitting. We eventually settled on a Monday and Tuesday in mid May, where I would be hooked up and trained under the supervision of both Gwen and a representative from Animas.

Gwen has been a significant part of my diabetes journey since the day I first walked into her office nearly six years ago. She’s been the one of the few constants I’ve had among an array of rotating diabetes healthcare professionals. I felt as though I owed her an explanation as to where my decision had come from. I felt like I needed to explain to her why I was abandoning the method of injections that she had taught me to do. In some way, I felt as though I needed her stamp of approval in order to move forward with this scary new way of managing my diabetes. 

But the words were struggling to escape from my mouth. I was overwhelmed.

“You don’t need to explain it to me,” Gwen said.

“I do. I never made this decision lightly. That’s why I didn’t decide straight away back in November. But injections are a lot of work. I don’t do the same things every day. I don’t eat the same meals every day. I don’t live that regimented lifestyle that seems to produce those good results. I feel like I owe it to myself to give the pump a go. My hba1c has been fluctuating within the range of a point over these last few years, and I’m aiming for it to be more stable and at the lower end of that range.”

But no matter how many words I managed to string together that day, I realised that this wasn’t Gwen’s decision to make. It was mine. It was a decision that I made for my own diabetes, and my own life. It was a decision that I will have to own. Right now, it’s a decision I’m damn well proud of.

Gwen totally respected that this was my own choice to make, and she never once tried to sway me either way. But it was still nice to feel a stamp of approval in her final words.

“I think you’ll enjoy pumping. I think it will give you the edge that you’re looking for.”

The Barriers to Insulin Pumping in Australia

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Decision day for the pump is fast looming. To Pump, Or Not To Pump? One resource that I finally got around to reading was a PDF created by Diabetes Australia titled Insulin Pump Therapy in Australia: The Case for Action. It’s well worth a read, check it out here.

Since I was diagnosed five years ago, I’ve attended a Diabetes Clinic in a Public Hospital. I’ve had free access to all of my diabetes specialists there, and I really have nothing to complain about. I’ve managed my diabetes on Multiple Daily Injections ever since, and I never really knew any differently.

I’d heard of insulin pumping. I knew it was expensive. I can’t say I completely understood the concept. In my world back then, it seemed fairly uncommon. I thought that it was something for people who were struggling with their diabetes management. My diabetes care team never really suggested, or encouraged insulin pumping as an option for me.

It wasn’t until finding the Diabetes Online Community last year that I really began to consider insulin pumping as an option for my diabetes management. I began connecting with many others who were using insulin pumps. I read their stories about them. I saw how significant a part pumping played in their diabetes management. I read the all of the news reported on diabetes technology, and I realised what a big deal insulin pumping was in the diabetes world. I even found myself compelled to write about and advocate for technology that I wasn’t even using.

Reading that PDF today, I’m not surprised to see that only 12% of Australians with type 1 diabetes have access to insulin pump therapy. I need only look at my own situation to see how many barriers there are towards switching from Multiple Daily Injections to an insulin pump.

My healthcare professionals have never suggested, or encouraged me to consider insulin pumping in the five years that I’ve lived with diabetes. Sure, I was diagnosed as a young adult. Sure, on paper my chart is probably among the cream of the crop. My endo told me “this is the best I could hope for” as her patient. But that doesn’t mean I wouldn’t see benefits from insulin pumping. I’d like to bring my hba1c down further, because my diabetes isn’t getting any younger. I’d like better stability overnight without having to pour my blood, sweat and tears into doing so. I would love to be able to eat more spontaneously when the occasion calls for it, and be less stressed about doing so. However, it was me who had to spark this ignition towards considering an insulin pump.

I could qualify for a pump through the Australian Government’s Insulin Pump Program. This program would subsidise up to 80% of the total cost of an insulin pump. However, funds from this program are being allocated towards the cost of pump consumables, despite their availability at a subsidised cost through the National Diabetes Services Scheme. The end result is that my chances of being allocated funds for a pump would be significantly lower. And because I am over the age of 18, I wouldn’t qualify for a pump as my need for one is considered secondary to those younger than me.

So, thank goodness for my Private Health Insurance, right? They will cover the cost of an insulin pump of my choice. However, in order to get my private health insurance to pay for the pump, their policy dictates that I stay in hospital. Which means that I have to find a hospital bed which so many others are in genuine need of, when the pump could easily be administered in a clinic setting.

Then, if my pump malfunctions outside of it’s warranty and within the next four years, I will have to bear the cost of a replacement. Why? Because my private health insurance will only provide a benefit once every four years.

Finally, if I do choose to switch to the pump, there will be at least a three month wait. I’m in a public hospital diabetes clinic where there are more patients than there are resources and time. As a patient, I was quickly weaned off of diabetes education as soon as I was able to manage things on my own. Where pumping is concerned, a block of four consecutive education sessions won’t be available for three months. Which sucks when I’m at a stage where I’m absolutely sick of Multiple Daily Injections and ready for a fresh start.

Seriously, I love our health system here in Australia. But surely it’s time that we cut some of the red tape.

 

Diabetes Tech: A Cure of Sorts?

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It’s no secret that my cure faith is not very strong. I don’t really live my life expecting, or hoping that my diabetes will be cured tomorrow. This post sparked a fair bit of conversation two weeks ago.

For the record, I define a cure as a means to regulate my blood glucose levels without any action from myself. No finger pricks, no carb calculating, no insulin injections, no treating hypos and no thinking about the whole diabetes thing! Long, uninterrupted nights of pure sleep and leisurely days free from the stress of managing diabetes would be very much preferred.

Although I’m hardly a diabetes veteran, technology has only come in leaps and bounds over the years. And I believe that’s what we are going to have to accept as a cure, of sorts, for the time being.

I believe that the right kind of technology could be a cure of sorts. There’s talk in the Diabetes Online Community of “closing the loop” – i.e. insulin pumps and Continuous Glucose Monitors (CGMs) that “talk” to each other. There’s artificial pancreases in development, and there’s always research surrounding insulin producing cells that could one day be a game changer for us all.

Technology will inevitably make diabetes easier to manage, going forward.

Technology is spectacular. Technology means a lot to many who already use it to manage our diabetes, evidenced here. Technology would be life changing to many, evidenced here and here. Technology provides our health with the best of prospects. And I know that I am extremely lucky to be living with diabetes in 2015, rather than 1915.

But technology is damn expensive, too. And that’s the one thing that worries me.

Research and development into new diabetes technology is costly. Then there’s marketing, promotion and distribution costs. And then of course, the business is a business and needs to make a nice profit from their efforts, too.

But where does that leave the humble young adult from suburbia, working his way through life on a less than spectacular wage? Where does that leave the parent of a young child, managing diabetes on top of family and work commitments? Where does that leave the person living in a developing country, unable to access basic healthcare and diabetes supplies? Did I mention these people are all affected by diabetes?

The sad truth is that diabetes technology, and the closest thing we have to a cure, is still out of reach for many of us. I refuse to adopt a CGM, because I can think of a million other things that I’d rather invest my hard earned money into. I count myself lucky that I am in an independent situation where having a CGM is not a necessity for the time being. For many people with diabetes, it certainly is.

Research and development needs to be conducted with an end game in mind – the consumer. These advances in diabetes technology need to be accessible and affordable to the consumer. Otherwise, I fail to see how we are doing anything to help people living with diabetes. Other than making them feel marginalised, deprived and isolated.

I don’t want to place the blame on any one party. Personally, I’d just love to see government, researchers, diabetes tech companies and diabetes organisations come together to find a solution. I know, easier said than done.

The only cure that I would give everything for, is a proper one. A cure with a one time cost that leaves me forever free of diabetes. A cure that is not reliant on devices, consumables, batteries, cable cords and credit cards. Now that, I would happily give all of my life savings for.

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