Thursday, September 4, 2014

An Artificial Life

Uncomfortable reality. 

One of the things that really worries me is that I live an artificial life.  I think all of us T1’s think about this from time to time. Scenario: We’re on a ship, the ship sinks, we are; in a lifeboat/on an island/clinging to wreckage…. with very limited supply of insulin. How long until we die?

A Dying Economy 

The issues of Climate Change, of Fuel Descent and a dying economy (as in the paper that I read yesterday,, are becoming my personal reality.  I'm only alive because I have access to insulin and the moment that access stops, my life stops. So the realities of our economic model crashing, the difficulties that might mean for manufacture of medicines and medical aid, the difficulties of transporting things around the world in a fuel descent scenario, the difficulty of getting supply are becoming a critical factor in my thinking. On a deeply personal level, I ask, “Will I survive?”

A Window in Time

Someone said to me the other day, when I commented on what a privileged life we lead in the ‘Western’ world, “It’s just a window of time, in history, it can’t last”. I think about the work of Insulin For Life, IFL is supporting many people who don’t live in this golden window, who face my reality check EVERY day of their lives. Will my life end like theirs? Will I have a few years where I scratch around eking out supplies of insulin, as and where I can get my hands on it, gradually becoming sicker, weaker, until I no longer have the strength to fight to get supplies? What’s happening to T1’s in Syria, Afghanistan, Iraq? Did they get out? Are they scratching around for an ever less stable supply of insulin? Are they all dead?

What do you think?

Are you a T1, reading this? What do you think, does this ugly fear raise itself in your conscious thinking from time to time? How do you rationalise it? Have you thought about Climate Change and the descent of the fossil rule economy as affecting your supply of insulin? I'd love to hear your thoughts.

Friday, August 8, 2014

Challenging the Experts

This weekend, I'm at the inaugural AMSL Diabetes Sports and Exercise Weekend at the Australian Institute of Sports, Canberra.
I'm here because I was offered a sponsored spot, and I'm extremely grateful to Australian Medical and Scientific Ltd., for the opportunity.
As I look around the crowd, I note that the majority of attendees are in their 20's - 30's, but there is a good handful of people in their 50's. I note this, because I have an agenda. I'm not just here to learn more about the physiology of Diabetes and exercise, I'm going to ask some hard questions about ageing and exercise. I'm going to ask where the support for the psychological effort that you need to make as you get older, to keep yourself motivated, is. I'm going to ask, "Who is doing research into Chronic conditions and motivation?" I know there is research into the physiology of exercise and it's effects upon glucose levels, that's part of what we are doing here this weekend. But what happens when you can't workout as hard as you used to, when old injuries, arthritis, hypothyroidism, and general ageing combine to thwart your motivation and reduce your ability? Is anyone researching the effects of ageing with Diabetes?
What's Next?
I've decided I need three things to keep me exercising:
1. Good company, and preferably the company of other T1's who 'understand'.
2. Psychological support. Tools to help motivate me.
2. Better medical support - physio, pain management, energy supplementation. The drugs for the hypothyroidism have helped, but I want more!
I've spent most of the past 27 years, working quite hard at managing my health. Unfortunately it doesn't get easier. Over the past two years I have stepped back from a high stress work life and started to work for myself, so that I would have more time to look after my health, however this has meant heavy financial penalties as I'm single and don't have a supporting partner. I'm trying to balance the physical and mental health demands of T1 with my ability to earn income and maintain a roof over my head. I need better support from our health providers to make the most of what I put in. The efforts that I have put in consistently over the past 27 years have reduced and delayed the likelihood of onset of long-term complications and thus reduce my cost to the public health system. I'd like to continue to maximise my options for long term health as much as possible.

Sunday, August 3, 2014

Ageing Gracefully NOT

I've been meaning to start writing about how it feels to be getting older while living with a chronic illness. How it feels to be finding that I don't bounce quite as well as I used to, that I'm tireder, more stiff, more sore, less able, more unsure than I used to be and that I don't like it.

We've just added yet another of the insidious auto-immune diseases to my collection, this time it is an under-active Thyroid, caused by a disease called 'Hashimoto's Disease', fairly common and more common in women with Type 1.
I like to tell myself that I'm immune to the long term effects of Type 1. That because I didn't 'get it' until I was 25, (oh my goodness, I've had T1 now for longer than I didn't have it!), I thought that the creeping long term effects wouldn't impact on me. No heart disease, no eye problems, no neuropathy, yeah all good... or is it?
A long time ago, soon after I was diagnosed, someone told me, or I read it somewhere, that having T1 means that you will age about 15 years faster.
I went into early menopause at 42. 10 years earlier than my older sisters and my mother. Luckily I had an alert GP at the time and she put me straight onto HRT, carrying me along for another 10 years. Menopause does lots of weird things to your metabolism, all of which have lots of long term effects such as loss of calcium from bones leading to low bone density and increased risk of breaks, loss of concentration, loss of muscle density and elasticity. The HRT helps slow the impact of the hormonal changes. I didn't really notice any changes until a couple of years after coming off the HRT.

Now, as I approach 60, I'm feeling less energetic, less able to cope. Going up ladders on my own is scary, I worry about my capacity to work and keep earning money to pay my mortgage.
I am full of aches and pains, during the night, when I wake to go to the toilet or to check my bgl, my hands hurt so much from the arthritis. When I get up in the morning my hips hurt and I'm stiff all up my thighs and my spine. No real cause, just ageing.

But really, I'm not that bad, just getting slower. I do worry more about what is around the corner, but I know that bad things can happen to anyone as they age, not just T1's. But I worry about what life will be like when I'm 70, 75, 80? Will I be able to manage my own insulin routines? Will it all become confusing? What if the endocrinologist wants me to change insulins to something newer, different?
Will I feel much like I do now? Will I be able to make myself keep going out for walks, keep gardening and bending from the waist down to see if I can still touch my toes? I used to be able to put the palms of my hands flat on the floor, fingers nicely spread and walk them back between my legs. Legs that were straight as a rod, no buckling at the knees, no complaining hips.
Today I am feeling every bone, every tendon, every muscle after two days gardening.
What about my cycling? I love long day rides with stops for coffee and the changes of road and wind. Lately I've been suffering from something no-one talks about. For us post-menopausal women, vaginal dryness can equal discomfort on the bike. When I was in NZ last year, I met some delightful  Septuagenarians, travelling around in motorhomes, with bikes attached to the back of the vans. We talked about trails and 'must do' rides, then out of the blue one of them said to me, "You're a woman, we can ask you this. What do you do about, you know, feeling uncomfortable on the bike seat? Sometimes it feels like there's a dry stick up there!" Indeed I knew exactly what they were talking about, "K-Y gel!" I said brightly and quickly, but you know, that is not the total answer.
Sometimes I think, there must be better solutions to ageing than this.

Does ageing mean spending more time attending to the diet and exercise routine. Stretching feels so good, maybe I need to add a yoga routine to my daily schedule? The day begins to look like this:
7am Rise, Blood test, breakfast, dress
8am Take the dog for a walk
9am Stretches/Yoga Get changed into bike gear, & check tyres etc
10am ride the bike for an hour,
11am home & shower
12 Noon - heck it's lunchtime already.

Hang on a minute, aren't I supposed to be at my desk by 9am?
I am still trying to earn a living after all.

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!"

Monday, June 23, 2014


I'm in a reflective mood tonight. I promised my DNE that I would put all the things I do during the 'at home' nights of the project, into an info graph type graphic to help other clinical trial participants, instead I found myself drawing these little LabRat illustrations. As I drew them I found myself feeling all sorts of emotions about being a 'LabRat.' It's a rather odd experience. On the one hand my 'bullocky' resilient, externally related side is a bit like the little rat with the JDRF cape, I'm a super-hero, putting my body on the line for science (said with a wry grin). Then again, the analytical side of me is interested in the process - what actually goes on in these trials, what data do they collect & how is it used? The little rat in the middle is off to see the world and see how it all works. Then there is the  sensitive scared little rat, a bit worried, a bit scared and feeling a little bit alone in the middle of it all. 
This week my BGL's are being stupid again, not outrageously so, but just a bit stupid. Today they have sat around 9 all day, just because they can. Last week I had a day where they drifted down all day, no matter what I ate, just because they could. No particular reason. I think this is what keeps me engaged with the research. The fact that MY personal experience of being Type1 is a constant puzzle and I personally want answers and a cure. I apologise to anyone who thought I was doing it for altruistic reasons.
Want to know more? Leave me a question in the comments box & I'll do my best to answer.

Tuesday, June 17, 2014

Now the fun begins

Today is Monday 16th June. It is also the first night that I will hand over control of my insulin pump to a smartphone and an algorithm. The low suspend safety function on the pump will be switched off and the pump will respond to information from my sensor by itself.

As I sit at the station waiting for the train into town, with my backpack and computer bag I start to think about all the what if's. Suddenly I want to phone my daughter, to say to her, "If it all goes wrong, remember I love you, everything you need to know is on my computer and there's a back up disk on my desk at home."
I can't phone her, she's at work, but the urge to tell her is so strong, I start to sms. Her response is swift and short. "Geezuz! Don't panic! I'll call you after work tonight."
I get on the train feeling quite surreal. A good friend calls on the phone and I tell her my fears, she listens patiently and kindly, and quietly brings me back to earth. I tell her, "I feel like an astronaut getting into the space rocket."
Once at St. Vinnies, my medical team settles me in, they are a diverse mob, intelligent, articulate and full of amusement at my fears. "The pump CAN'T go spacko and give you a massive overdose, it's got maximum bolus settings, remember? In fact you're more likely to overdose with an injection." says my DNE.

I remember the time I took a long flight and arrived in a town early in the morning, with insulin pens and no needle caps for them. I made the Taxi driver take me to a pharmacy to buy a syringe so I could draw up the insulin and inject. Sitting in the back of the cab I realised as I finished injecting into my thigh, that the syringe I'd purchased was in units ten times the micro units I normally used and I had just injected ten times my normal dose. The taxi became airborne as it crossed intersections where the road surface humped. The driver dropped me at the hospital emergency entrance and took off without his payment. I spent the whole day attached to a glucose drip on a trolley in the emergency ward. They wouldn't draw a curtain around me for fear that I would slip unobserved, into a hypo. I felt like I was in a glass bubble, like one of those people who are born without any immune system.

The set-up checks begin, did I put a new sensor in on Saturday? Have I put a new pump line in? Am I ready for dinner? 68gms of carbohydrate. This time it's packet Lasagne, followed by biscuits and cheese. Thankfully my lovely DNE has brought in some fresh spinach leaf to add some greens. I'm prepped with a cannula in my left arm for the hourly blood taking.

So here I am and everything is working brilliantly, the smartphone screen shows my bbl levels tracking and the pump insulin delivery tracking right alongside of them. My BGL goes up, the insulin delivery goes up, my BGL goes down, the insulin delivery goes down or stops. It is extraordinary.

 People come and go, mostly wanting to talk and while away the time on the long overnight shift. I want to focus on what I'm feeling and prepare to try and describe it for you. The vein with the cannula in it collapses and decides not to allow any more blood to be drawn. A new cannula is inserted into my right forearm. This one is more comfortable than the one in the inside of my elbow.  By midnight I'm feeling more secure about what is happening, but my levels are drifting lower going as low as 4.8 before turning back up. I can't sleep if I'm lower than about 5.5 and I spend an extra hour or so restless and hungry. I decide not to eat, and to allow the system to right itself and by 1 pm I'm back up to 6 and thankfully drift off to sleep. I'm aware of the nurse coming and taking blood every hour, but basically I don't care and I stay asleep until 8am!
Top line BGL, Bottom line Insulin dosing, currently delivering 0 units p/hr as bgl drops.

The system is an 'intelligent' one. All the fine tuning we've been doing over the past couple of months has been uploaded to the system so it can 'learn' my responses to insulin and glucose.
One of the side benefits of taking part in this type of research or clinical trial is that you are given an opportunity to intensely focus on your health. I have never had such good results from using the pump as we are currently achieving after two months of cgms and fine tuning. To all those doubters out there, all I can say is pumps and cgms are awesome!

The next step will be for me to have the system switched on at home for 4 nights in early July.
I can't wait!

Tuesday, May 27, 2014

Lab Rat life

Day 2 of the four nights at home using the closed loop system, without closing the loop.
I'm pretty tired tonight, although I slept well last night. The system doesn't interrupt my sleep any more than usual. I normally wake sometime between 2 and 5 to do a finger prick, so the mandatory one at 3am isn't anything out of the normal. The biggest hassles so far are the 48 hour urine collection and the dumb cognition testing.
Being T1 is sometimes a funny game between myself, and my medical team. I try to be honest and admit my mistakes and own up to bad behaviour, but sometimes I just don't say anything and try to get away with it. The clinical trial is so intense it makes this really hard. My DNE makes a couple of calls a day to me and we chat using txt messages in the evening. Once I link up the new software to my pump, and she logs in online to monitor it, the truth is out there. When my BGL's hit 19 tonight I had to admit to having scoffed some of the chic chip bits that were supposed to go into the cake I was baking for my friend. Added to which, I'd had a minor low after undertaking the pre-dinner exercise I was told to do every evening.

This requirement had me a bit worried as my bgl's tend to track downwards fairly fast pre-dinner and I didn't want to have to muck around with readjusting everything. Of course I went low after the exercise, so I ate some jelly snakes and then had dinner without bolussing. Now I'm paying for it big time. At 9pm my bgl's were up to 19 so I took a correction bolus, on the sensor screen they drifted down to 14.8 and got stuck there for 2 hours. I felt like crap and my legs started twitching, a sure sign of a high for me.  So I did another finger prick test.... 18.9, just what every T1 wants before going to bed, NOT!
My DNE scolds me, "We don't want a spike just before starting the closed loop at night. It makes it hard for the system."  She pauses for a minute, then says, "then again it will give it a real test...."
Fortunately tonight, I'm still on the practice run and we haven't actually connected the closed loop.

Monday, May 26, 2014

The Lab Rat goes home

Field of very big Telescopes
Where in heavens name are we?
I got home from the SPSP (the SouthPacific Star Party) in Wiruna NSW at 19:30 last night. My sister & I drove up, leaving Melbourne on Thursday morning and staying in a little cabin park in Wagga Wagga that evening then continuing along the Olympic Highway on Friday to arrive at the campsite at 3 in the afternoon. We were both very tired, but managed to get a fabulous hour with a fellow who let us look through his telescope at Saturn, the Tarantula nebula, some globular clusters, the Jewel box, and then pointed out how the dark spaces in the Milky Way form the Emu, which was observed and pictured in rock art by the Aborigines thousands of years ago.
Seeing Saturn through the telescope made my gut jump. 
I haven't been writing much about the 'Closed Loop' project for a while, as really, nothing has been happening apart from trying to fine tune my levels. I've spent 4 or 5 days intensely monitoring food and some times I think it really doesn't make much difference, they will still go awol if they want to. I put in a new sensor on Saturday, sitting on the floor of the tent, the last one died about 1:30am in the middle of all the fracas with the late camper arrivals on Friday night and I just couldn't be bothered doing anything about it even though I was awake. I was scheduled to put in a new pump line on Sunday but after thinking about travelling for 12 hours to get back home, I decided to put it in on Saturday, once again while sitting on my sleeping bag in the tent.
Today I went back into the hospital to set up the 4 day at home trial. I think the thing that most worries me about this is just the intensity of all the things I have to do each morning and evening.
I exit the hospital armed with 4, 2 litre containers for urine collection, 1 smartphone, 1 translator gizmo, 1 laptop computer, 1 actigraph wristband, 1 daily sleep diary, 1 sleep questionnaire (p/day), check sheets for each day, instructions for connecting all the gizmo's, oh and don't forget to have a 40 minute exercise session each evening before dinner, do the cognition test before bed and when you get up, check the pump settings after you disconnect in the morning, wake up half an hour early to take your thyroid medication and make sure you tick off the check sheet!
This is now my life as a Lab Rat for the next four days. 

Tuesday, May 13, 2014

Here comes the sun

7am. I'm awake properly now. Against all probability, I actually slept quite deeply in between the hourly blood tests and the discomfort of the cannula in my arm. I can't wait to get it taken out at 8, though. I've been hoping that when the sun rises it will reflect in the windows of all the buildings in the magnificent view from where I lie. Already I've captured a photo of the pre-dawn glow from the office window where my DNE and Doctors have been spending the night.

There's blood in the crease of my elbow, under the cannula. I must have had a bleed during one of the blood collections. I feel surprisingly alert. I basically flatlined all night, once we got it stable at 6 mmol. I had to eat about 30gms cho extra after my meal, as the lightweight hi GI meal just didn't stick to my ribs at all!

The DNE comes in and begins telling me once again about the procedures I will have to undertake each morning. I think I'm going to need to create a visual aid to remember them all. She's determined to make sure that by the time I take all the gear home in two weeks time, I'll be able to cope with any emergency. 
8am, one last blood-test and the horrible cannula is removed from my arm! The only lasting effects from this overnighter are a slight change to my evening basals and a sore arm. I guess that will pass.  

Monday, May 12, 2014

Sleepless in St. Vinnies.

OK here we are, the first Big Night Out. I’m in at St. Vinnies, my DNE has been fussing around making sure my bed is nicely made up. I tried to help by tucking in a corner and got into trouble for doing it wrong. I said, it’s OK I’ve lived with it like that my whole adult life and it hasn’t affected me.
I’ve had a bit of fun posting on facebook. Initially I was told I’d be in a 4 bed ward & have it all to myself, so I called for EOI’s about what to do with the other 3 beds and got some marvellous answers. I think the two best were the request to make blanket forts and post the photo’s on FB, and the one to set up an obstacle course to trip up the nurses coming in to do the hourly blood tests. As it turns out, the room was originally a 4 bed ward, but has more recently been converted to a discharge ward, with lounge chairs for people awaiting discharge. One bed has been left in for the duration of the research project, and there are 4 large, lush armchairs and TV’s. It’s a bit weird having other people coming into the room and plonking down in the armchairs to watch TV. It’d be different if I was actually sick, then I just wouldn’t care, I’d just want to be looked after.

6pm. Officially the dry-run test has now started. Dinner comes at 6:30. What can you say about frozen meals? It’s Angus beef, roasted with gravy, chips, green beans and carrots and they all taste like they’ve had the flavour leached from them, then been soaked in a mildly sweet juice of some sort.  The meal is accompanied by a multi-grain bread roll that has more air in it than dough. 65 gms cho, they tell me. I’m a bit nervous about this as I reckon my bgl will plummet. I’m used to more greens & meat, and less carbs. If I’m going to bolus for 65 gms then it is usually something fairly hefty.
There’s an old guy who keeps wandering in and plonking in the chair opposite me. He puts the TV on and holds the speaker handset close to his ear. Every now & then I catch him sussing me out. I’m wondering whether to just close the curtains around me.
My DNE comes in to set up the monitoring system. There’s a smart phone, a translator and a tablet. Everything talks to every other thing and to the pump. I have to learn to switch things on and off and make sure they’re talking. When I take the system home in two weeks time, I will have a fairly complex morning routine to follow. I’ll have to switch the system off, check that all the pump settings have restored to normal and then do the cognition test.  I’m glad I’m not working full time!

I was right about the meal & the carbs being a bit light weight. My bgl’s drift down to 4, I have an orange juice and some dried biscuits. Strike, it’s like being back in hospital when I was first diagnosed 32 years ago.
At 8:00pm the hourly blood tests start. By 10pm the cannula set is irritating the heck out of me. It's painful & I wonder if I'll be able to sleep at all.
The Doctor leading this project comes in for a chat. He's a Westie and passionate about the state of health in the Western districts. We talk about the likelihood of the project leading to successful and improved treatments, whether a commercial version will be affordable or supported by public funding and politics and (lack of) funding for the local Western hospital that is in desperate need of an ICU. 
The DNE assigned to me is a delightful person and the blood tech doctor is kind and compassionate. I have a good team around me and it's time to try to get some sleep.

Sunday, May 11, 2014

Type 1 Dilemma

I'm in bed after a big day gardening at my younger sisters' country property with all my siblings. Then I came home to dress and go out to a 50th birthday party where I ended up dancing like a 20 year old, but I didn't last much past 9.30 pm!
Now I find myself in one of those Type 1 situations tonight where I bolussed for quite a lot of carbs at the party, then didn't eat as much as I thought I would and now I'm in bed, very tired and wanting to go to sleep, but not game to, until I see which way my bgl is tracking, and I either eat or turn down the basal so that I'll get through the night ok. 
I was scheduled to do a sensor change today and thought I'd leave it until I came home from gardening at my sister's, as I expected to be home about 4 pm, but as it turned out I didn't get home until 6.30 pm. I knew I had to recharge the sensor transmitter before putting a new sensor in, so I put the transmitter on the charger whilst I went out to the party, and then put a new sensor in when I got home at 10.00pm. However the new sensor will need a calibration finger prick test done in 2 hours, so that means waking up at midnight to do that test. Bugger it! I think I'll eat a banana and try and get some sleep.

Tuesday, May 6, 2014

It's not an artificial pancreas.....or is it?

I wanted to update my thoughts about being part of the Closed Loop research this morning, but I’m afraid my concentration and happy state of mind is being thrown for a loop by various internet subscription systems which are NOT behaving in the seamless manner you would expect and by my internet connection running slow and causing me to see red!  It’s incredible how things can just derail your emotional equilibrium very quickly. I’m also sick today with a herpes attack and I think it’s just an accumulation of the various stresses about finance, doing the research project, trying to find work, trying to get my business up and running and having emails from someone who saw my ad on airbnb and decided to ask at 11:30 pm if it would be ok to book in for 3 nights starting today(!) Fortunately after getting up out of bed, and conducting an online conversation over the recalcitrant internet connection mentioned earlier, the person decided that they would stay in central Melbourne instead and I got back into bed at 12:30am. So this morning I was feeling on the verge of tears, but after taking time out for a coffee and chat with two very dear girlfriends and I’m beginning to crack a smile again.
Many thanks to Type 1 Diabetes Memes for this entirely appropriate one!

Back to the closed loop. I’m having daily conversations with my research DNE and we are doing some fine tuning of the pump, but that’s all a little uncertain because I think this attack of herpes is pushing my bgl’s up. I'm using a pump that belongs to the research project, not my own pump and I believe that the project pump is behaving differently to my own pump, which is an interesting thought. The Enlight sensors are amazing, they stabilise immediately and are very consistent with their readings. It’s bliss not finger-pricking 12 times a day.
Today my DNE explained a little more about the extra technology involved in closing the loop. This study is different from the ones you may have read about in other blogs. It’s not including glucogen in the interventions, it just relies on the pump responding to the rise and fall in bgl’s by increasing or decreasing insulin.  As well as the pump and the cgms, there are two more pieces of technology in the closed loop system. These are a smart phone with an app which will run the algorithms that tell the pump what to do and another piece of technology that translates between bluetooth and radio wave technology as the pump doesn’t speak bluetooth.
I think one of the things I’m feeling at the moment is just how amazing it is that I am prepared to basically put my life in the hands of this technology and how much this digital technology has progressed since the 1990’s. I mean,
1. I’m relying on the algorithms to be right,
2. I’m relying on the pump to continue to work properly,
3. I’m relying on the sensors’ to work properly,
4. I’m relying on the transmission of data over radio waves and via bluetooth translations to be right…..
I must be MAD!

Monday, April 28, 2014

Closed Loop Here I come!

Day One of the big research project and I have to be at the hospital by 8am. Up at 5:30, I'm worried about not taking the dog for a walk and I leave the house with the back door wide open so she can go outside. She looks at me lazily and only gets up 5 minutes before I leave at 6:40.

I'm anxious about parking in at the hospital, I'm broke and don't want to spend money on parking fees, so I catch the train to North Melbourne and ride my bike up along Victoria Pde., to the Daly wing at St. Vincents. The Diabetes Education Department is on the fourth floor in an old ward which looks as though it hasn't been repainted since it housed patients. I wonder about the psychological impact of such an old building on the people who work here.

My appointment starts at 8am and the morning is spent meeting the team who will be working with me over the next two and a half months. 

I meet my 2 DNE's, the 2 research Doctors, the 2 Psychologists and the woman who brings the Actigraph 'watch'. I sign the consent form. The pump and sensors that I will use during the next 14 weeks are set up. I put on the Actigraph and agree to fill in the 6 day record keeping sheet that accompanies it. The actigraph is basically a movement sensor that records information about my activity during the day and at night when I sleep. (Little do they know that I'm a very restless sleeper, I worry that they won't be able to tell the difference between when I'm awake and when I'm asleep.)

There’s more filling in of questionnaires and participation in an extensive interview with the psychologists about how I feel about using a pump and cgms, what I think I will feel about the 'closed loop' period of the study and what my expectations are. This gives me pause for reflection and when I say I think I will find handing BGL control over to the technology, 'confronting', I realise what a control freak I am about managing my own BGL's. I am measured and weighed and am delighted to find I'm a kilo lighter on their scales than on mine. I'm blood tested and blood pressure checked.

I spend half an hour practicing Cognition tests on a laptop that I am to take home for when I am doing the monitored sessions at home. The tests consist of recognising cards and the patterns in which they are shown. I will need to do these tests in the evening before sleep and first thing in the morning as soon as I wake up. I don't like to think what the results will look like if I've had a couple of glasses of wine with dinner. I think this is going to be the funniest part of the program. The tests are unutterabley boring and to have to repeat them morning and night is probably going to make me fall back to sleep when I’m supposed to be getting up.

I also have to do urine collections while in the monitored phase of the project. The last time I had to do a urine collection was when I was living in Townsville and the Walter & Eliza Research Institute called for participants in a research program they were running. I dutifully collected around 2 litres of urine and carefully placed the large plastic bag inside a foam '6 pack' esky they had supplied, taped it all up and had it sent back via airline transport, from Townsville, Qld., to Melbourne..... unfortunately the plastic bag broke in transit.....

I’m relieved to find that my first round of the program will be  a ‘dry run’, everything will happen except for the activation of the closed loop. I will be wearing the Actigraph, the sensors and of course the pump, and they will all be connected (wirelessly, thank heavens!) to the web-based monitor which is actioned through some sort of smart-phone ap. (This bit I haven’t seen yet). My DNE tells me that while I am sleeping 'hooked up', there will be up to 4 people monitoring me as I sleep, one of them in California!

At 1:30, I’m given a late lunch at the cafeteria, where the barrister makes me a beautiful coffee and finally I'm sent home with 2 boxes of sensors, a new pump, a new meter and strips, and the Actigraph!
I’m feeling a little over-awed.

The monitored sleep sessions are set up like this:

1.  In 2 weeks time, I have my first overnight stay in St. Vincents
2.  2 weeks later, I do 4 nights connected to the monitoring system while at home.
3.  6 weeks later, I do another overnight stay at St. Vincents. This time with the closed loop activated.
4.  2 weeks later, I do 4 nights connected to the monitoring system with the closed loop activated, while at home.

So that's it for the first big day. Now I have two weeks of using the sensor,  filling in the diary for the actigraph component to set up a baseline about my sleep patterns and living normally. 

If you've got any questions - leave a comment and I'll try and answer you.