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!