Sunday, July 6, 2014

Closed Loop, The Achilles Heel.

In the wash-up, I need to split my reflections on the trial into two, the first being about the intensity of being a trial participant, the ‘LabRat’ experience, and the second being about the technology itself. I have written quite a lot about my feelings about being a 'LabRat' and I'd like to make some comment about the technology itself.

The technology is extraordinary, the ‘algorithm’ that runs all the calculations, the engineering of the components needed to translate radio signals to bluetooth and back again. But there is an achilles heel that I discovered on that final night. I was shocked on waking to do my calibration check, to find that I HAD dropped to 2.9 and the pump alarm and and smart phone alarms had NOT woken me. The  thing that woke me was the fact that I had set a 3am alarm on my phone to wake and do the calibration test. My night watcher phoned to see if I was OK, as I was busily drinking the orange juice and contemplating whether it would wreck the trial if I stuffed my face with glucose tabs. My night watcher insisted that I should eat and kept talking to me until he was satisfied that I was alert and in control of the situation. He had been watching the downward trend and systems were in place  to call in the troops if my safety was in any way at risk.
Does this mean the technology failed? Or was I so fast asleep that I just didn’t hear the alarms? The algorithm did what it was supposed to do. The screen graph showed that my basal insulin had been shut down for two hours already. I think I had a delayed reaction to insulin overload from the day before, when I had a massive high BGL after eating a Chinese meal at a business lunch (I suspect it was laced with MSG). I’d had to make a number of corrections throughout the afternoon and even at dinner time my levels were still at 15 and I ate a very low carb dinner. The BGL's had flattened out at about 10 by bedtime, but it appears that the insulin load continued acting throughout the night. So - Yes the algorithms worked as they had been set up to do, calculating how to react to the current state from the data history,  but the algorithms can’t know or respond to the fact that you’ve done something radically different the day before, which is having a tailing effect. In retrospect, this is why the trials of systems with a form of glucagon solution as well as the insulin are so important.
Health and Social Equity
I’m massively impressed by the technology, but also realise that this is just in it’s infancy, theres a lot of fine tuning to do, components need to be miniaturised and communication systems between sensors and pumps further improved. There’s also big questions around who is going to have access to this technology. The system will ultimately comprise of a next generation insulin pump combining insulin and some form of glucose, and a very refined sensor. At the moment, in Australia, the Health system sponsors pumps for children under 18, but if you are an adult you must have private medical health insurance to cover a pump. So, Pumps are already off the radar for low income earners. If you’re lucky enough to be able to maintain your Private Health cover, you can access a pump, however the reality is that pumps will need to work in combination with Sensors, and Sensors cost approximately $75.00 each and last for 6 days, and are not covered by PBS or Health insurance. That's an annual cost of approximately $4,500. So if you are already paying about $2000 a year for Health Cover, plus your 1.5% income tax Medicare Levy, plus about $1000 p/a on pump consumables, test strips and insulin, you are now paying around $8000 p/a to stay alive. Oh, you can also add on the fact that the Transmitter units for the sensors only last about 2 years and need to be replaced and are not covered by private or public health care systems. Most T 1’s have a range of health issues including other autoimmune system conditions such as Arthritis and Thyroid problems, so don’t forget to add the medications and treatments on, for them too.
I and thousands of other Type 1 Diabetics, work extremely hard EVERY day to maintain our health and reduce our cost to the public health system. We eat well, exercise all the time, do painful finger prick blood tests, calculate our insulin doses, look after our eye, nerve, kidney, liver and heart health, consult with our medical teams, support each other and welcome and support newly diagnosed T1’s.
I want a Cure!
This coming technology is not what we want. What we want is a total cure, but in the meantime, this next generation technology will give hugely improved health outcomes, reduce the cost of complications from long term T1 treatment in the health system and ensure that over 140,000 Australians can contribute to their communities, and the greater society in full, including paying taxes to contribute to the general social wealth. Personally I work hard contributing to research and fundraising for further research. I appreciate the fact that I am lucky enough to live in Australia, but…  if we as a society, are going to create this great research fund, (through sacrificing other areas and through personal effort to fundraise for specific causes,) then ALL Australians MUST benefit from it. Medical research outcomes that have been funded through the public purse and public fundraising efforts, should not be only for those that can afford them, and must not be used for political leverage, as Mr. Hockey has recently done.

The Morning After The Night Before

We danced last night at the local folk festival. I am so unfit! Its a long drive home in the rain, one headlight down, hardly anyone else on the road. My sleep is restless, I’m low at 3am, I eat glucose and try to sleep, things on my mind. I need to get that quote for the next contract done, I should join the club ride, I’m tired. Work wins out and I pike on the ride, but there’s a deeper factor. My BGLs drop and drop, I get them back up to 4.5 they flatline, I eat more. I square wave the breakfast bolus and delay walking the dog. I’ve got that weird feeling in my legs, I can feel the glucose being sucked out of my thigh muscles. Finally it comes up to 5.1 and the dog and I head out the door. I’m halfway home and the pump alarm is going crazy, dropping, dropping and I’m stuffing jelly snakes in my mouth. Make it home get the kettle on, swallow a banana whole, stagger into the study. The phone rings and it’s Brigid from the HeraldSun, ready to read me the story that’s going to print. Is this an OK time, she asks and I’m thinking “Will I stay conscious long enough?”, but I say “Yes, fine” and we go through the article. It’s really only a couple of lines that she’s quoted me as saying, and they are fine. I thank her, she asks if I got copies of the photos from Tim and arranges to ask him to send me some. 
Now my BGL’s are rising, 7.7 with double upwards arrows on the screen. Oh jeeze, have I eaten too much? My thighs still feel funny and I settle back to write and wait.

Tuesday, July 1, 2014

Texting with Fuzzbrain

This research is not something to enter into lightly. Last night after a self induced late night on Sunday, when I stayed up way too late playing with graphics and updates to my new website, I almost hit the 'I'm over it!' button.
It started with an early morning appointment in at St. Vinnies, having the usual pre-session, blood tests, urine tests, and memory test to see if I remembered how all the gear works. During the gear check, we opened a Closed Loop session and went as far as starting to download data from the pump, then we decided to shut everything down to pack it all up so I could head home. Wrong!  We pulled the plug on the App as it was halfway through a process. This was to create headaches late in the evening.
I then complicated things by allowing my friend who was staying overnight as emergency backup, to cook dinner. My friend has recently been to Vietnam and was keen to demonstrate a Vietnamese recipe to me. The recipe was for beef and noodles wrapped in a lettuce leaf. The noodles she used were gluten free rice noodles.  Just as Carbs ain't Carbs, Noodles ain't Noodles. The packet said 49 gms of carbohydrate for my serve. I dutifully bolused for 49 gms of carb, and ate pears and custard and chocolate as well just in case, then spent the rest of the evening going down down down that slippery low sugar slope.  Eventually at about 21:30 my levels started to rise. By this time I was super tired and trying to connect up all the gear.... My DNE and I spent an hour and a half trying to get the App to connect to the pump. It just kept crashing. My DNE was frantically chasing up the  IT Engineers in the USA to find out what we  were doing wrong. Eventually we worked out that instead of hitting the Continue Previous Session button we needed to 'Start New Session, to clear the App memory and get it working again. By now it was 23:00 and I was SUPER tired.  I decided to unwind for a little in front of the TV and finally got into bed about midnight after frantically doing the cognition test on the computer at 23:30.

The rest of the night became a string of black holes and text messages.
At 3:00 the alarm went off and I climbed groggily out of the nice black warm hole I was in, to finger prick and calibrate the sensor. I couldn't think what I was supposed to do with the information from the meter and I txt my DNE, "Meter BG 6.2".
DNE: "You've entered into pump and calibrated?"
Ahh, THAT is what I'm supposed to do. I drift back into that warm cocoon.
6:41 'Beep' from the iPhone
DNE: "Hi Cath, I've lost data for the last 20 minutes",  I think "So?"
ME: "lk Onto it"
"More sleep...."
DNE:  "Shut down whenever you feel ready. I've sent a little email to compliment your morning checklist. My monitor is being collected in a bout half an hour so it can get to DNE2 tonight. I won't be able to view you after that any more, but don't hesitate to call with any queries"
How is it possible that anyone can write so much at this hour of the morning?
ME: "K, zzzzzzzz."
I'm nearly back into that lovely warm blackness.
DNE: "Sunshine wants a walk!!!! Sorry but for your safety I need you to close down now. I can't leave you without remote monitoring. Sorry!!!!"
ME: "Out. Sunshine says she's tired because she was p late"
DNE: "No, No, I know she's nudging you!! LOOK AT YOUR CHECKLIST :-)"
ME: "OK"
"Temp basal reset, max bolus reset lo suspend on"
"Bugger! I'm awake!"