Tuesday 20 September 2016

Off-label Dexcom use: Diabetes Gore and A cautionary tale (of a lump named Trump)

It was just like any other sensor removal - something which had become second nature over my 3-year Dexcom use.  Frustratingly on only day 6 of wear, the edges of the sensor tape had lifted off so much that when I rolled the dog-eared tape edges back and peered underneath, I could see the puncture site where the sensor pierced my skin.  Time to take it off.
I was a little annoyed because I hate removing a functioning sensor early, but since my daughter arrived I haven't had the time to continuously check that my CGM tape is still taught on the skin, and quite often I now lose sensors before they expire naturally anyway.  I have to pick my diabetes battles now that I am juggling a whole other life - one which has yet to learn about CGM sensors and why mummy needs to take five minutes to fiddle with Rock-tape and Skin Tac rather than read about gluttonous caterpillars and prowling lions.
As I pulled away the sensor pad and transmitter from my skin, the small puncture wound seemed nothing out of the ordinary: visible, but tiny.  I wiped the skin with a sterile wipe and carried on my day expecting the usual 24-48 hour heal-up time for the puncture wound to disappear.  But 48 hours later the small puncture wound was now a lump.  Barely possible to detect and seemingly innocuous, but somehow foreign feeling on my ordinarily flat outer thigh.
'What do you think?', I asked the GP on my first visit, because I had been warned that the thyroid medication I am on can react badly to an infection so I always needed to check anything suspicious.  "Let's wait and see, but I don't think it's infected." he purported. 
So I waited.
By the third visit. with my skin colour changing and my experience of the lump - now growing in size and thickening in texture - was starting to sour.  The experiment in waiting was now an hourly pre-occupation on my mind.  I was sporting what I was convinced was an example of part of a sensor being stuck in my leg. But my claims fell on deaf ears.
Trump - an unsightly,
strangely-coloured object with strange
ideas of world domination
"I'm sure it's nothing.  If there was something in there it would be hard or would work its way out." I heard, over and over.

I was told everything from "It's a bruise!" to "It looks like an abscess!", but no-one believed there could be anything left inside my leg, despite my protestations about just how tiny the foil-like sensors are. The thing made my leg look like the elephant man, but there was nothing inside, or so they told me.

By my fourth, fifth or sixth visit (I'd lost count by then) my leg, sporting a lump named Trump (big, ugly, discoloured beast unwelcome in its own land) was the stuff of my (actual) nightmares.  I would dream of legs being amputated or infections so bad I could no longer control them. My mood was already low and Trump was making life a darn-sight worse.
By the time I noticed something protruding from my leg, which when pulled at released a whole bunch of disgusting, and two small shards of what appeared to be foil-like sensor, I had seen two GPs over five visits, one diabetes consultant, the A&E department at QA Hospital and a walk-in clinic. I had been placed on antibiotics by the A&E department and was feeling like my leg would explode.

The GP finally got interested around the time that the wound opened, and has since then seen me every two weeks.  But this happened in May.  It is now September.  That's four months of my life spent worrying about how much worse this leg could get.  Four months of my life barely using Dexcom because I was still dealing with the damage of Trump the Rogue.  By the time it broke, and the antibiotics were flowing, my leg looked and felt like something from a diabetes Public Heath Announcement, and I felt just a little broken. 

Diabetes, don't do it kids...
It's been four months and the Trumpy Lump, complete with colouring of yuk and texture of gross, is yet to go.  I'm not sure if it ever will.  The whole experience has been less than enjoyable.
But here's the thing, I still love my Dex.  Even now, with the lasting effects of one gone bad, I love it.  Granted, I enjoy my Dex-free times now, but with a holiday just a few days away my thoughts are already on how many I'll need and how useful it is to have.  And how I miss it, when I have some paraphernalia free days.  Dexcom is an amazing tool, but its not infallible.  It can go wrong.
I emailed some of the pictures through to Dexcom because I decided they should see, and hear about, what I would be posting.  They replied and after a lengthy conversation with Dr Vitaliy Gisin, who called immediately on receiving my email, I got given this advice:
Dexcom advice
Firstly - if you think there is anything lodged under your skin, insist upon an X-ray.  Because of the angle that the sensor goes in, when some gets stuck in your leg, it has trouble working its way out.  In many people the body can just deal with or expel the foreign body, but as I have proven with my slightly broken, semi-functioning body (my words, not Dexcom's!) sometimes this can prove hard.  But an X-Ray would have shown the metal up bright enough to be sure, and could have been done some months ago.
Secondly - off-label is not OK.  Although I make no bones about my use of sensors for far longer than the 7-day label use, this has always been my choice, and I wouldn't advocate anyone else do it.  And although this sensor was on day 6, I used the outter part of my thigh.  This, Dr Gisin confirmed, is also off-label, and he recommended I return to using my abdomen.  My problem with this is that cannulas are painful to use in other areas and thanks to pregnancy, what little usable skin I have left is reserved for my cannulas.  This makes sensor placement tricky. But rules are rules.
Thirdly - and lastly, if any part of a sensor snaps off in or out of your body when removing - keep that sucker in a piece of tissue and send it back to Dexcom.  Dr Gisin was rather disappointed to have discovered I didn't keep the minute shards of sensor I pulled from my leg, as we will never know how or why they failed so badly on day 6 of wear.
So there you have it, my slightly-disgusting and depressing reason for posting pictures which shatter your image of my gorgeous pins (chortle).
Keep Dex-ing people, but do it carefully.


  1. Firstly eeeeeeeeewwwwwwww!!!!

    But much more importantly - glad you got it sorted. And glad you shared your cautionary tale. Hope it heals up invisibly before long.

  2. Thank Mike. I have a picture of it having exploded. If you wanna see :-P

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