My heart breaks for a T1D in a coma for past year

A few days ago – on my Facebook and Twitter pages – I made a statement about a T1D, an RN, being in a coma for almost a year.   I was in an emotional state and close to people who knew her – to really look at both sides of what actually happened.  In reality – we may never know the truth – due to lawsuit that is in progress ....

When I was around 8 and still learning the ropes of diabetes a few years after my diagnosis in the 60's, I remember a friend of mine, Karen Chin.  Her Dad had a car that had cruise control.  In my mind, I envisioned Karen and her family, on a road trip, with her Dad sitting in the driver’s seat, no hands on the wheels and simply letting the car do its thing and they’d get from A to B safe and sound.  Was it due to my watching Star Trek?   The Jetson’s?  My HIGHLY overactive imagination?  In the end, I’m not sure when, maybe when I started to grow up (me? Grow up) – I realised – there was more to “cruise control”.  A child’s imagination can be so funny at times.  Thinking about this yesterday, got me thinking about the devices we use for our diabetes control – aka the insulin pump that has been around since 1963 (a HUGE backpack version).

Early insulin pumps - a cry from what we wear today

In the past, I’ve been contacted by people who have had pump failures and written about at Diabetes1.org and in other diabetic forums on the Internet. I’ve felt privileged over the years to tell their stories – and some people who have read them – get very upset with the fact that the pump manufacturer is being pointed at as the bad guy.  From what I had heard from families – and the testing of the pump by third parties – the finger was seemed to point at the manufacturer – not the user – but in the case of what I heard this week – my mind is reeling in all the what if’s – that it’s been difficult to concentrate on work.

All I can say is – that some of us have come to the conclusion is due to mass production that society now expects – problems WILL occur – a pump will fail - in a perfect world it shouldn't happen – but it does from time to time.  I've never been able to find statistics on how often this occurs – and perhaps someone reading this knows more than I do – but still – where is the line drawn for "X out of 100" pumps – to make the users of pumps be concerned.

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I was at my first local insulin pump meeting since 2007 – in the quaint town of Cornwall, Ontario.  It was a small group, of  6 adults, but it was nice to shoot the breeze with others over some of the topics that were brought up for discussion by the ring leader John Caldwell.   Someone mentioned about a T1D woman in a coma – and sent to a rehab centre in Hamilton, Ontario.  They were wondering how she was doing and hoping she was alright. 

I didn’t think anything of it – until the next day – having breakfast at the club house (we’ve been working on our sailboat getting her ready for the season so stay there for overnighters).  As I was talking to one of the club members, doing my calculations on George Michael for my morning pig out.  I mentioned about this woman who was in a coma.  He immediately started to tell me about Amanda* who had been on an insulin pump for many years, that his wife who is an RN, had worked with her, and are close friends with her and her family.   She was diagnosed in her early 20’s.  Last June, it appears that a neighbour came by to drop off a package that contained an insulin pump that had been delivered at their house due to no response at Amanda’s house.   They then discovered later in the day, that the reason for no response to the delivery was she had slipped into a coma.

It was revealed that a call was placed to the pump manufacture by Amanda herself the day before – and this is the reason for the next day delivery of a new pump.  Perhaps her pump was having problems?   I cannot say for sure – but a new pump had arrived.   The history within Amanda’s pump had been wiped of EIGHT HOURS –with no record of anything during that time frame.   If she had stopped the basal due to having problems with blood sugars – or perhaps she bloused – and gave too much insulin – but there is no record according to what I was told in her pump history.   From one of her other pumping friends, I have heard that she did enjoy a glass of wine or two or … if she had been drinking – could she have gone low – and then passed out – then into a coma.   Whatever occurred during that time, we may never know. 

It’s all a question of theories at this point, since everything is hearsay – so saying that the pump had emptied out the full cartridge of insulin – like it has with some of the other T1D’s I’ve written about in the past – we do not know if this occurred to Amanda. 

Her family had her airlifted at some point after – at their own expense – to a state of the art health care centre in Hamilton, Ontario that deals in rehab and brain injuries.  She stayed there for abit – but with not getting any better – the family once again – air lifted her back home.  In the meantime, while dealing with this, Amanda’s only sibling, a brother died.  I mean, how devastating is that?

So, a year later, she is still in a comatose state, her eyes are open, but according to her close friends she is not there and they say she wouldn’t want to be living this way – that she would rather be dead.   That she was once a vibrant woman, full of zest for life floors me as a diabetic.   Her family has now decided to honour her wishes of DNR (Do Not Resuscitate) – as a RN herself – she probably knew how difficult this can be for family members – but watching someone who is not all there – is something I know for myself I would not want to be living that way.

As her friends said to me, seeing her in this state, and knowing her well enough that she would tell them to pull the plug, is heart breaking for them to witness (they see her a few times a week).  They’d even go to prison they were saying, if they could perform this duty.  On top of all of this, Amanda’s only other sibling was killed earlier in the year, so imagine what her parents are going through – this is what breaks my heart the most.

The other thing that has been going through my head with writing this difficult blog – that will leave many of you asking similar questions - perhaps having a closed loop system might be the answer - though I still worry that with more bells and whistles that there is more that can hiccup in the devices we wear.  If Amanda  was unable to respond to her CGMS - if she wore one that is  -  informing her pump that she was going low or high – would the pump have the ability to take over at that point – without her telling it what to do as she was unconscious –  and either shut down or give her more insulin?

Will what really happened ever be revealed about what occurred with her insulin pump, like with the other cases or it was Amanda herself at fault?  Who knows?  The one thing that I did learn is if something like this happens to any of us, with our insulin pumps perhaps going wonky, *** DO NOT GIVE IT TO THE FEDERAL GOVERNMENT TO TEST OR HAND BACK TO THE MANUFACTURER ***.  Get it tested by a third party that is impartial.  Whether this has been done with Amanda’s pump – I’m not sure – but due to the legal actions taking place right now – I’m thinking it has been.

*Name changed to protect privacy