Helen: My Dexcom is set to alarm at a low number that should give me a chance to treat a low before it results in a serious situation
Diabetes is nonstop. It is always in my mind when I’m making any decision - how will this affect my levels? Is there a risk I will end up low or high? What will be the consequence if I was to go high or low, will its impact last all night/will it impact my working day/will it stop me going out for the bike ride I planned/is there help around if I need it?
Before I had my Dexcom (Continuous Glucose Monitor that costs me $380 every month) I typically had two paths I’d take when making decisions. The one where diabetes would stop me, it’s too hard to manage and the risk is too high, I’ll just do something else. The other one was where it wouldn’t stop me, I would do that thing I wanted to do even if it would be hard.
One thing was becoming a ski instructor. I instructed for 3 seasons whilst using my blood tester as I didn’t have a CGM or FGM at this point. It was apparent that I found taking blood tests really hard to do on the job. When I did do a blood test it would just give me a static number. For example, it might show I was 6.5. But if I was just about to go take a lesson and was 6.5 and going down I had to eat something, but if I was 6.5 and going up fast, I would be ok. This is some of what the Dexcom shows - what direction your levels are trending and how fast. Back when I was instructing the fear I had of going low was too big to ignore. After most lessons had finished when I’d test my levels, they were mostly in the 20s. This was dangerous for my body as well as meaning I wasn’t in the best position to be instructing. In the evening I’d try to get them down but would often go too low. Keith, my partner, had to battle countless lows as I would sleep though unaware until he woke me. My first eye check after this period showed signs of diabetic retinopathy, my body was taking a hit with these hugely out of range levels.
Now, my Dexcom is set to alarm at a low number that should give me a chance to treat a low before it results in a situation that needs support to get out of. It also alarms when I’m high, giving me a chance to correct my levels before they get too high. These alarms keep me in the ideal range a lot longer and they also give me peace of mind when out and about doing things. There is no need to have my levels so high to prevent a low as the Dexcom is going to alert me. I also now have the t-slim insulin pump. These two things work together so that if I’m going low my Dexcom communicates with the pump to suspend insulin to help lower risk of dangerous lows.
Whilst the pump is subsidised (after meeting certain criteria) the Dexcom is not. The only way to have this life saving technology in Aotearoa is by handing over a lot of your hard-earned money. I’m on a subscription and it’s $380 a month, every single month.
I’m lucky I am currently able to afford this, but it shouldn’t be like this, the Dexcom shouldn’t be a luxury item. The Dexcom has given me the chance to make decisions based on what I want, rather than ones that have the least risk for my sugar levels and diabetes. I can do things and know that this CGM stuck on my arm is going to have my back. It hasn’t made diabetes easy but for me, it’s made it possible to manage well. Since I’ve had my Dexcom I’ve done a lot of races, (including a marathon, 5 half marathons and a 100km bike race), I’ve started driving again (unawareness of lows and fear of lows was a major factor in fear of driving before) and I go to sleep at night with less fear that I won’t wake up due to a low. With the Dexcom I have the chance to do daily things with levels in a much better range, my control is so much better, and my hospital appointments show the positive impact that in range levels are having on my health. I feel lot happier knowing how the Dexcom is improving my long-term health. This is just a small example of how Dexcom has positively impacted me and my diabetes.
Please PHARMAC, make the Dexcom something everyone who needs it has access to.