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.

Pregnancy and diabetes weeks 13 - 24: Trimester two

When I first fell pregnant it felt as though the magic 12-week mark, when we could more 'safely' announce to the world that we were expecting, was light-years away.  Managing my secret 'pregnancy diabetes' around colleagues and friends was tricky, but strangely exciting, like an affair with none of the sordid details.  By day I carried on in my job, exercise routine and social circle as usual.  By night I would sneak away to hospital appointments to discuss growing babies, bellies and basal rates. Bat-Anna and her new double life were in full swing.

But with the 12 week mark now upon us, we got to announce to the world that we two were to become three, and that the extra tummy 'pooch' (attractive, much?) and enormous(er) cahunas I was lugging around with me came with purpose.  We got to see our little growing bun, now less kidney-bean shaped and looking just like a little person, and were re-assured that we had passed the first round of testing for congenital birth defects.  At this point some of the many clinicians I was seeing would tell me I could stop taking my increased (5mg prescription strength) dose of folic acid.  Some however told me to carry on for a while, so I did, right until 20 weeks.

During the whole pregnancy the first three weeks of the second trimester on the sail into the unknown were the most easy-going.  Insulin sensitivity drifted off, giving a well-earned rest from the 45 minute hypos brought on by the final days of the first trimester, and now knowing there was a healthy kicking baby on board, life seemed to go back to normal.  My new normal, anyway. At about 12 weeks the placenta starts to function for itself, and the change in not only symptoms of pregnancy like spontaneous day-sleeping and ravenous carb-mania, but also the more predictable blood sugars, made for a veritable day off.

At the point we started to tell people was the first time I really started to feel pregnant, seeing as bat-shit crazy blood sugars are often all in a day's work for us D-champions, so even though I knew the hypo marathons were baby-related I had to repeatedly remind myself that's why.  But at week 15 the first flutters started to happen and my growing waistline and pride in becoming a parent was matched  only by the growing insulin resistance which started to hit me at around week 18.

By week 20 I was raising my insulin at certain times of day (between 2am and 5am) three to four times weekly, as my dawn phenomenon (when I am already most resistant to insulin) went into overdrive.  I would often have to notch up my overnight rates every 2-3 days, trying my best to leave a day in between to monitor my efforts.  FYI, if you can resist upping them daily you deserve a medal - one I will personally craft for you, but its worth it when you don't have to deal with monster hypos from over correction.  It was around this time that I truly saw the value of my Animas Vibe pump and Dexcom CGM into their own, because despite being 4.5 months pregnant not once had I had to wake my self up at night to try basal testing (the world's most futile during-pregnancy task) because my beloved Dexcom was all over that shit.  

Yayyyyy, my blood sugar today is perf.....oh. Ok

It was around this time of pregnancy that I also learned to make peace with the odd highs and lows. While traveling with my baby-daddy in New Zealand I had worn out the asphalt in many a campsite by walking at un-Godly hours through the guilt that a blood sugar of 12 or 13 mmol would give me in the pit of my stomach.  But the 20 week 'anomoly scan' had shown me that my body and overall

good control had so far given me a healthy, perfect baby, untouched by the blasted condition I carried around with me.  Some days I nailed blood sugars and insulin resistance, others I 'failed' miserably (or so I felt).  Some days were a bizarre mix of good and bad.  But every day was a day on the countdown.  I earned to tell myself that every day - be it good or bad - was a day I nailed.  And if I wasn't aware of my hard work paying off in the steady HbA1c and healthy scans I was pulling in, then the first true 'kicks' my kid gave me at 22 weeks, were all the sign I needed, because my kid clearly had something to say on the matter.

The second trimester was tough, in ways completely different to those in trimester one.  Instead of  being pro-active in my preparation for pregnancy, keeping secrets, dealing with insulin sensitivity and hoping to reach that 12 week mark safely, I had to learn how to be reactive, flexible, self-forgiving and most of all, to enjoy it.  Any time I needed a reminder of why I was trying so hard in my day-to-day life I just looked at those moving images of Baby McP, and any crappy day was forgiven.

I was now two thirds of the way through baking my bun and my daily mantra of 'test-change-review-repeat' felt a little like an annoying 2013 rave song, but kept me sane when the words 'routine' became a thing of the past, now replaced with 'constant change'.  The second tri certainly did a superb job of keeping me on my toes, but my new normal was somehow, working out just fine, one day at a time.

Off-label CGM use: words of caution from my consultant

I spent most of today thinking my 24 day-old sensor was 'way off', because the calibrations were rarely within 1 mmol; something I have come to expect from my trusty companion.  When I wasn't scoffing at the result, I was resigning myself to pulling it - something I hate doing when I've managed to get almost a month out of it.  For some reason I become attached to a sensor the longer it lasts and the better it performs.  But I thought that this might be a good opportunity to test out a word of caution my consultant had given me in clinic some months ago.

When my consultant found out that I was using my Dexcom G4 sensors for waaaaaay longer than the 7 days they have CE approval for, he offered me a word of caution.  Two, in fact.  Firstly, doc was worried about the damage I might be causing to my might-be-needed-one-day cannula sites, as I was regularly getting 21-28 days out of sensors - up to four times longer than advised.  The second concern he had was that over time, the peaks and troughs the trace would show me would be less sharp as the sensors response to glucose in the body becomes blunted, meaning you won't get the precision you are looking for and could even miss the highs or lows you bought CGM to catch in the first place

As I downloaded the data I was writing the 'watch out for this, folks' post in my head already. But as I looked at the picture, this is what I found:

The red dots are my blood glucose calibrations today, while the purple trace is the results my sensor was providing.  I felt surprise as I looked at it, having been convinced this was 'the risky bit' my consultant had warned me of.  But even though the calibrations felt 'way off', when you look at it though the objective eyes of hindsight (and some kick-ass software), the valuable trend information (that we have so banged into us is more important that the 'exact number') is still there.  At my highest point the sensor was spot on, and at my lowest it was still reflecting the changes in my glucose trends.  In fact when you really look at it, the CGM still appeared to be picking up a few more peaks and troughs than my BGs did, as it should.

Perhaps it felt that way because this is the kind of data you see would normally see on day 5 of week 1, when the sensor has had a chance to be calibrated numerous times but is still a 'fresh' sensor, in the long run:

This day was generally filed under 'not so great'.  Any BG of 18mmol at 3am is always filed under 'not so great' (unless you are normally 24mmol at that time of night, in which case, go you!), but despite the crazy roller-coaster day, the only two calibrations I did (unusual, for me) were both absolutely spot on.  Perhaps it is because of this kind of precision that I have become so accustomed to that threw me off when the calibrations seemed so 'far off' today. 

But having seen the data from today and realised that the sensor was not as AWOL as I felt it was, I'm going to keep hanging on.  Despite being 24 days in I've yet to see more than one set of ??? marks, meaning communication-wise the sensor is still going strong and speaking to the received without any problems - something that can falter in an older sensor.  And although my calibrations are a little off bulls-eye, the trend data is still more valuable than finger sticks alone, so I will plough on until this one gives up the ghost for good.

Hopefully sometime in 2015.

Bloody Dexcom sensors: live or die?

Now and then I enjoy a little break from wearing my Dexcom sensor.  It takes commitment to wear a CGM 24/7 because even though it is a fantastic tool, with that and the insulin pump attached to my arm, I can look a little 'AI' at times.  It's a family joke that I am slowly replacing my organs with mechanical ones so that I can live forever as a machine while they wither and die, but realistically I can look a little experimental at times.  A few days off here or there, sometimes when things are going well and I rely on it less; sometimes as things head South and I need some 'alone time', can do the world of good.  There is no rule book (and even if there was, I probably wouldn't follow it).

"Ah, shit!"

Halfway through the insertion today I see a pool of blood collecting beneath the transmitter cradle.  It would seem counter-intuitive not to want blood on the sensor, seeing as it feels it should be reading my blood sugar levels, but it's not. The sensor shouldn't really be in contact with any blood, because it reads the glucose in the fluids in my tissue. And from what I've read in forums and support groups, blood on the sensor isn't always a good thing.  

"Please, please let it work, this cost me £50 and I'm on my last one!"

But I've done 'gorey' diabetes more than once, so maybe it'll be OK, right?   It'll be OK, these things are surprisingly tough.

Two hours later the alarm goes, it's time to enter my blood readings. Good news I guess, except that no matter how many times I enter it, I get this confused looking symbol:

A drop of blood and a timer.  

No matter how many times I enter a number, neither symbol disappears, and it doesn't wake up.  So I wait...and wait.

"Please... C'mon... Please..."

I leave it 15 minutes at a time, telling myself that after three hours I'll re-start the sensor giving it another try.  Perhaps the blood will dry.  Maybe if I shower it will wash away from underneath? 

Um, what now? That's new. I've not even seen this one before.  OK, well, 15 minutes it is.  See you in 15.

Fifteen minutes passes and my handset is still giving me all kinds of strange results.  The timer disappears and a 'tick' arrives, but as soon as I enter a new reading, the tick re-appears, as does the other drop of blood.  Meh.  It's pretty much a sure thing this sensor is on its way out, but the £50 note is burning a whole in my mind.  Maybe just 10 more minutes...

SHE'S ALIVE !!!!!!!

And man do I have some work to do to get the reigns shortened again.

Face cannula?

January 2014 will mark the fourth anniversary of my jumping on the pump wagon (that sounds somewhat racy, if you found this blog looking for something else, I can only apologise for what is about to follow...).  In that time I have reaped the many benefits of life using an insulin pump that converts spout about all the time; better BG control, more predictable BG levels, rarely bruising, no more needles, more freedom. Not exactly uncovering any secrets there.

But there is a little problem I has discovered as the years roll on: serious lack of 'landscape'.

By this I mean that once you remove your two or three day-old cannula, you need to move at least an inch away and allow that space time to heal for two weeks (ideally). That may sound easy, but after four years I am discovering that fleshy real estate on a diabetic is a valuable commodity. 

This weekend, as I prepare to join my cousin at her beautiful outdoorsy country wedding, and having reached a bit of a stale mate on the diet front, I decided to purchase some of those hideous monstrosity pants (Bridget Jones-esque) that suck you in and lift you up. You know the sort of thing like nickers with a girdle in. Smokin'.

As I 'hoiked' them up (actual term for the process of giving oneself a full-body lift while squeezing metres of your body into millimetres of garment), I realised that my usual stomach cannula site wasn't going to work. There was no room for anything else in this pant-horror.

But where to re-site it? My right arm currently rocks the Dexcom sensor, my giant pants rule out my midriff (I kid you not, they are THAT big) and I don't really want medical devices on both sides of my body when I sleep. They are a little 'lumpy' sometimes. 

So that leaves me with two options: my thighs or my face. You ever see anyone wearing a face-cannula? No, me either. 

So tonight I am trying out a thigh site. So far it feels awkward and obvious, like I am insanely aware of it being there. But that's how I felt about arm sites, stomach sites and love handle sites, too. And I have no doubt a face site would do the same. 

Perhaps I am about to discover my new favourite site, perhaps not. Time will tell. 

Do you use thigh sites? Or better still, a face-cannula?