Système Flash d’autosurveillance du glucose : FreeStyle Libre, un essai d’un mois

C’est la première fois que j’écris en français sur mon blog. Désolée si ça se lit un peu comme une traduction de l’anglais… c’est le cas ! Et merci de me pardonner s’il reste quelques fautes de grammaire…

Au cours des prochaines semaines, je souhaite partager mon expérience du nouveau dispositif d’autosurveillance de glucose de chez Abbott, le Freestyle Libre. Ce lecteur vient de recevoir la marque CE pour la commercialisation en Europe et sera bientôt disponible en France.

Pour commencer il faut que je précise :

J’ai été invité par Abbott à pré-tester le nouveau système FreeStyle Libre qui vient de recevoir la marque CE en Europe mais qui n’est pas encore commercialisé. J’ai reçu gratuitement de la part d’Abbott, le lecteur Flash et deux capteurs (à porter 14 jours chacun). Je remplirai un questionnaire pour le fabricant sur le dispositif à la fin du mois et autrement je suis libre de parler de mon expérience comme je le souhaite. A la fin de mon essai, je rendrai tout matériel non-jetable à Abbott.

Kit de démarrage du Freestyle Libre

Bon, c’est dit, donc je peux commencer… Je suis très contente de pouvoir tester ce nouveau dispositif car c’est le premier lecteur de ce type à être fabriqué. D’après les vidéos que j’ai pu regarder sur le site dédié, je vois déjà des avantages par rapport à un lecteur de glycémie “classique”. De plus, je porte un lecteur de glucose en continue (Dexcom) depuis un an maintenant et j’ai hâte de pouvoir comparer les deux méthodes de suivre ma glycémie.

Quelques avantages évident du système Freestyle Libre :

  • Il n’a pas besoin de calibration, c’est-à-dire, plus besoin d’effectuer de piqure au bout du doigt pour connaitre son taux de glucose et autant de fois par jour qu’on veut ! Mais bien évidemment, la consigne donnée est de tester sa glycémie par une goute de sang si jamais il y a un doute ou pour vérifier une hypoglycémie.
  • Chaque capteur aurait une durée de vie de 14 jours (et j’espère bien que ça reste collé aussi longtemps!!)
  • Le capteur garde des données en mémoire, ce qui veut dire qu’on peut s’éloigner du lecteur pour jusqu’à 8 h sans perdre des données.

Pour l’instant le point négatif qui me saute aux yeux comparé à la technologie que je porte actuellement, c’est qu’il n’y a pas d’alerte pour une glycémie trop basse, trop haute ou qui change très rapidement en montant ou descendant.

Abbott s’appui fortement dans leurs efforts de marketing sur le fait qu’il n’y a plus besoin de se piquer le doigt – à mon avis ils vont un peu trop loin. Dans une des vidéos “teasers” qui sont sorties il y a quelques semaines, il y a la phrase “ce sont les mains qui sont le plus affecté par le diabète”. Je ne peux pas être d’accord. Autant je serais contente de laisser mes pauvres doigts tranquilles, je dirais que mon diabète a beaucoup plus d’effet sur mes émotions et ma santé mentale, sans parler du côté physique des hypers et des hypos quotidiennes et la planification, les calculs et l’organisation qui rempli bien les journées!

Pour l’instant je ne peux pas donner d’avis spécifique sur le produit car je vais poser mon premier capteur vendredi prochain. Par la suite, je ne manquerai pas de relayer mes impressions. Pour l’instant, je ne peux que réjouir du fait que des nouveaux dispositifs de ce type soient développés et commercialisés. Cela dit, commercialisé ne veut pas forcément dire accessible. La sécurité sociale n’est pas encore prêt à rembourser cette nouvelle technologie et je n’ai encore aucune idée de son coût réel (ça sera une de mes questions pour Abbott!).

Donc revenez voir mon blog au cours du prochain mois si vous voulez en savoir plus sur le lecteur Freestyle Libre. Si vous avez des questions, je ferai de mon mieux pour y répondre.

Vous pouvez également suivre les impressions de Fred sur ce nouveau lecteur sur le site de VivreAvecUnDiabete.com.

Freestyle Libre glucose monitoring system – 1 month trial

Over the next month, I am going to be trialling the newly CE approved Freestyle Libre glucose meter by Abbott. This meter has received a whole lot of press this past week (HERE and HERE and all over the diabetes online community on twitter and Facebook) when the news came out that it was going to be released in Europe. 

Starter kit for Freestyle Libre glucose monitoring system

I’m going to start right off the bat with the disclaimer :

I have been invited by Abbott to test out the newly CE marked Freestyle Libre glucose monitor, slightly before it is officially released in Europe. I have received the meter and 2 sensors (to be worn 14 days each) free of charge from Abbott. At the ed of the month-long trial, I will be filling out a questionnaire on the system and I am free but not obliged to write more about my experience. I am not being paid to participate in this trial and will return all non-disposible material after the trial to Abbott.

There, now that that’s out of the way, I’m very excited to give this new product a try. From watching a few videos online, I can already see the many advantages it has over a regular blood glucose meter. However, I’ve been wearing a Dexcom CGM for a year now and I am unsure how I’ll feel about some of the differences between this new device and a CGM.

Some of the most obvious perks of the Libre :

  • It requires no calibration, not even at start up – and has only a one hour startup “blind” time. (Although precaution is of course give to test your blood glucose level with a finger stick test if unsure of the Libre reading or to confirm a low.)
  • Sensors are to be worn for 14 days (and I hope they stay stuck that long!!).
  • The sensor stores data so you can be away from the “reader” (hand held part of the kit) for up to 8 hours with no gaps in your graph.

The most obvious downside, at least compared to my current technology, is that it is not a continuous glucose monitor and since I have to scan the sensor for readings, there are no alerts to lows or highs or rapidly rising or falling blood sugar levels.

Abbott is leaning heavily on the “no finger pricks” in their marketing effort – almost too far in my opinion. In one video released in France, they go as far as to say that fingers are what is most affected by diabetes. I strongly disagree with this statement. Even if I would love to give my poor finger tips a break, diabetes has a far greater influence on my emotions and mental health, not to mention the physical side of dealing with daily highs and lows and all the D-planning, D-math and D-organisation that fills my days.

I can’t say much more on the specifics of this new product yet as I won’t be inserting my first sensor until friday this week but I will report back with how I feel about it once I’m wearing it. So far, I’m excited that new technology like this is becoming available. Of course being available and actually having access is another question. As far as I know, there will be no reimbursement for this new product in the European countries where it’s being released over the coming months. I have no idea what the cost will be but that will be one of my questions to Abbott.

So stay tuned over the next month and I promise some feedback and would be happy to try to answer any questions people may have.

New pump or not new pump?

With all these #showmeyourpump pictures filling up the internets, I thought I’d share some of my thoughts around my pump choices.

I first started pumping in 2000 with a minimed 508. I loved that pump because it was what gave me my first taste of the freedom of different basal rates throughout the day and to be able to take a meal bolus with the touch of a button. I still have my old 508 along with a set of batteries and a couple of reservoirs – just in case. When minimed’s (or was it already Medtronic by then?) first paradigm pump came out – the 511 – it was the natural “next pump”. However, if I remember correctly, the 511’s features were about the same as it’s predesessor; it was mostly the outer physical aspect of the pump that was upgrated at that point. I didn’t stick with it for long.

Cozmo was the first “smart pump” on the market and I was lucky enough that France was the second country in the world where it was available. It came out in the US in late 2002 and Smiths Medical decided to use the World Diabetes Congress in August 2003 in Paris to launch the pump to the rest of the world.  I got my first Cozmo about a week before the WDC.

Any time I have needed to switch pumps since then (for warranty or malfunction issues), I have always chosen to stick with the Cozmo despite the fact that all pump manufactuerers have come out with several newer pumps over the last decade and despite the fact that the Cozmo itself has no longer been available since 2009.

In France, all insulin pumps and pump supplies are ordered through specialised medical supply companies. They buy the pumps and supplies from the manufacturers and patients “rent” the pump and buy supplies from these third party suppliers (covered, thankfully, by French social security – the famous “Sécu”). So, lucky me, even though Smiths Medical took their pump off the market, my supplier still has some in stock and it is still avalable to me – at least until they run out of reservoirs.

#showmeyourpump

After 11 years, I still love my Cozmo with its personalisable menus and features. I choose to use an insulin pump partly because it makes it easier to adapt my diabetes to my lifestyle and I love that I can adapt my Cozmo to my own habits and needs in terms of diabetes management.

That said, after 5 years now with no updates, I figure it is worth looking at what else is out there.  I’ll spare you the full details of my pump comparison but one negative aspect of this process for me was that there are only 3 pump options here in France :

  • Roche Accu-Check Spirit Combo
  • Animas Vibe
  • Metdtronic Veo 554 (which I think is equivalent to the  MiniMed 530G system in the US)

When you look at some of the unique features of the T:slim, the Omnipod or the Snap pumps, it is disappointing that those are not at least options here.

With the choices available to me and my own preferences in terms of features that are important to me in a pump, I chose to weigh the pros and cons of staying with my Cozmo or switching to an Animas Vibe.

To get to know the Vibe a bit better I talked with a nurse educator at my pump supplier and she showed me some of the main features. I talked to people using the Vibe locally and on social media to get their impressions. I posted detailed questions on diabetes forums asking which of features I love on my Cozmo might also be available on the Vibe. Finally, still unsatisfied that I didn’t get the nitty gritty of the comarison that I was looking for, the geek in me decided to download the user manual, which I read cover to cover.

The Vibe looks like a great pump and I know many people who use it and are very happy with it. It has certain features that I would like to have on a pump and don’t have today, like showing my dexcom graph, or different insulin sensitivity factors at different times of day. I would trust it’s waterproofness more than my current 4+ year old Cozmo and I could use software like Diasend to compile a majority of my diabetes data. These would be definite advantages of switching.

However… after much thought, there are still too many features on my Cozmo that I use daily or weekly that are not available in the Vibe (or any other pumps available to me) that have made me decide to stick to my status quo.

Just to name a few:

  • size, shape and light weight (though I’d be happier if the Cozmo was slightly less thick)
  • user set site change reminders (even though most often change my sites every 2 days, I have a hard time remembering when the last change was)
  • the ability to save temp basal rates that I use often
  • detailed history feature including daily carb intake, %of basal insulin and averages
  • fewer button presses to complete any action
  • the intutive nature of the screens (right and left buttons make navigation easier)
  • very personaliseable reminders & alarms (although there is one more that I would like to add)
  • can give a quick bolus using unit of insulin or grams of carbs
  • a battery change only involves changing the battery (no re-priming of reservoir or losing stored data)
  • a low reservoir alarm at a only 5u left (rather than a minimum of 10)

All these years later, I am still disappointed that Smiths Medical decided to leave the diabetes business. They had a great product and I will continue to use it as long as I still have access to replacements and pump supplies.

If you use an insulin pump, I’d love to know what features were deciding factors for you in chosing your particular pump.

Eating out with D and CD

This past week my husband and I have been childless as the girls are spending 10 days with their grandparents. It’s been eerily quiet at home but we’ve been productive with things that are difficult to do with kids under-feet (like go to Ikea and put up new wardrobes). We have also taken advantage of spontaneously being able to go out in the evening to dinner or a movie. And, since next week is our wedding anniversary (8 years!) we planned an evening out in a very nice parisian restaurant. Lucky for us, there is no shortage of choice in that regard!

A neighbour had recommended Saturne. When my husband made the reservation, he gave them a heads up about the fact that my meal needs to be completely gluten free. Eating out is always risky when you have celiac disease but luckily, I rarely have an issue in french restaurants finding gluten free food on the menu. In fact, I have insulted a few chefs over the years just by asking if the sauce might be thickened with flour (Of COURSE not, madame, we only use crème fraiche!!). I know what I generally need to avoid and what dishes are usually ok and I know where the possible stumbling points are (like a biscut sticking out of the top of a chocolate mousse). I’ve got my gluten explanations down pat in french and I have found that the nicer the restaurant, the easier it is to deal with the gluten issue.

We were glad we made a reservation as the restaurant was booked out despite the fact that we went mid week in the middle of july (when half the population of France is on holidays). After we were seated, the first thing the server said was that it was a “carte blanche” 6 course menu with 2 starters, 2 main dishes and 2 desserts, but we would have no idea what would be served until it was actually on the table.

I love being surprised by food since 99.9% of the time I know exactly what I’m eating, both in terms of making sure it’s entirely gluten free and doing my best to guestimate carb content. But it was the next question from the server that really made me smile “Do you have any food allergies?”. This question was asked at each table so we hadn’t actually needed to mention the gluten when we made the reservation.

Food allergies are not a “thing” in France. You aren’t generally asked when invited to someone’s home or when you register for a conference or banquet dinner if you are vegetarian or have any allergies.

In this situation it makes sense that they ask given that everyone in the restaurant are eating the same meal but it is not a question that you’d hear very often around here. They actually told me that the whole meal is gluten free anyway so no worries.

And it was fabulous. A variety of textures and mixes of flavours, beautiful colours on each plate and different types of plates with each course. I should have taken more pictures. Here is the second starter of lobster wrapped in leek and topped with fresh almonds and some tasty greens.

SaturneDinner2

It’s always difficult to bolus correctly for meals like this but I managed with a  small square bolus at first and a regular bolus once I saw the desserts. There were minimal carbs in the first 4 dishes and I wasn’t too hard to guestimate the carbs in the desserts (or, more likely, I got lucky!). My blood sugar stayed below 160 the whole meal and I’ll give partial credit the wine that accompanied each dish for keeping my blood sugar steady around 110mg/dl all night.

The only hiccup in the meal was the last dish which was like a chocolate mousse with a dollop of hay-infused cream and topped with bits of brownie.  I politely declined and when the server remembered that I was “the one with the gluten intolerance”, she quickly took it away and brought back a very chic fruit salad with green and orange melon, rhubarb and apricots, sprinkled with a variety of fresh herbs.

With the title of this post, it sounds like I’m going out to dinner with friends! Unfortunately I don’t have the choice to leave these two “friends” at home but I certainly don’t let them stop me from going out and enjoying myself.  I am so appreciative that I can trust a restaurant to give me a truly gastronomic meal with little fear on being “glutened”.

It was a lovely and relaxing evening out and a wonderful way to celebrate 8 years of marriage.

I need a basal profile change reminder!

I’ve been wondering for a while about when will be the right time for me to switch insulin pumps because the pump I currently wear is no longer on the market and well past its warranty date by now. One of the main reasons I’m still wearing my Cozmo is that I’m a little picky when it comes to insulin pump features. I’ll write more about my my pump comarisons and decision process at another time but for now I want to throw out a question to the diabetes online community:

Does any pump on the market today automatically switch from a weekend to weekday basal profile on monday morning and back again on friday night? Even better, at a user specified day and time? I’d even accept a user-set reminder to do it manually.

Let me explain. All last week I was able to observe a very specific pattern emerge in my glucose levels. Every evening right around the time I was picking my kids up from school and getting home to put dinner on, my blood sugar tanked. So yesterday, being the beginning of a new work week, I was determined to be prepared. My BG was coasting at about 120 during the afternoon and about 45 minutes before I left work I ate 10g of carb in the form of dark chocolate figuring that the fat in the chocolate will keep me from spiking but that amount of carb should hold off the expected low.

The result? An hour later my BG had slowly and steadily risen to 182mg/dl. My first reaction was the typical frustration at diabetes for never acting how you would expect. Then I realised my own mistake. It was monday and I had left my basal profile on “weekend”. (So perhaps the real surprise was that my blood sugar hadn’t been higher all day with a lower basal rate than I usually have while sitting at my desk. I sense some more basal testing in my future!)

This is not surprisingly not the first time I had noted a need for a reminder to switch basal profiles. I don’t work wednesdays (a very common thing for mums in France as traditionally there is no school on wednesdays) so I switch back and forth between my weekend and weekday basal profiles twice a week. And I definitely forget from time to time.

Spending my monday with a weekend profile didn’t result in anything too dramatic. I corrected that 182 with a fraction of a unit of insulin, switched to the weekday profile and went on with my evening. For me, forgetting to activate the weekend profile can have more notable consequences with some pretty major lows on wednesday or saturday mornings. So an automatic switch or an integrated reminder would make a real difference to me in terms of having one less diabetes-related detail to think about 4 times per week.

While I’m at it, why don’t other pumps have a site change reminder feature?

Voices in the #doc

The diabetes online community is amazing. There are so many committed, inspiring, and articulate individuals who contribute to the sense of community. These advocates Share their stories and spearhead actions that we can all participate in to increase awareness and support each other in the day to day burdens of managing diabetes.

Some of these people and initiatives are so amazing that it’s easy to feel overwhelmed and think, “but what can I possibly contribute after what all these folks have already done and are doing?”. The internet is so full of accessible information and support about living with diabetes these days. Sure, I can add my voice, but won’t it just get drowned in the ocean of voices that are already out there (and that have more interesting, funny and inspiring things to say than me)?

And then something happens that reminds me that each voice is important.

I co-founded and moderate the #frdoc weekly tweetchats. They are very much based on the #dsma principles and format, but are in french and in a timezone that makes sense for people living in France. It’s a small group each week, as people tend not to be very public about living chronic illness here and twitter seems to have more of a professional than personal use in France. There are few PWD on twitter – or at least people who use twitter as a means to communicate about living with diabetes. But despite its modest reach, the group is slowly growing in participants and lurkers.

At one tweetchat a little while ago, the topic was finding the “positive” in living with diabetes. Before the chat began, someone who had until then never participated, tweeted to ask if the topic was a joke and how could anyone ever find anything positive about living with diabetes. After I replied that no, it was definitely not a joke, she decided to participate in the chat. At the end of the hour, her final comment was “Thank you so much for this chat. I will now be open to exchanges with other PWDs that I had, until now, been avoiding. It will have taken this unbelievable topic!”

Sometimes it just takes being a voice there in the right time and place (and in the right language) to make a positive difference in the life of one person. And that’s really what the #DOC is all about, isn’t it?

Morning lows throw off entire days

I woke up this morning and found a 103 on my dexcom with a nice flat line through the night. This was confirmed by a 105 on my meter. Those circumstances always make me happy to calibrate the CGM! And thankfully, this is fairly standard for me currently. Wearing a CGM for the last 9 months has really helped me tweak my nighttime basal rates to keep things on an even keel.

But daytime has so many more factors that influence blood glucose levels and each day seems to bring on a new set of variables. This morning started like many. My 3 year old came crawling into my bed at 6:45 even though she knows she’s not to get out of bed before there’s a 7 on the clock. I got up and hopped into the shower leaving my husband to fix breakfast for the kids. If my blood sugar had been high upon wake up in might have given a correction and breakfast bolus before the shower but this morning that was not the case.

After getting dressed and reconnecting my pump, I did take that breakfast bolus. Then as I got my breakfast ready, I finished packing the picnics that my girls needed for their respective field trips today, I helped them get dressed and dealt with only one minor meltdown. By the time I was actually eating my toast (only 10-15 minutes later) my husband let me know that my dexcom was vibrating In the other room. I looked and sure enough, it read 64 with a south east arrow.

I grabbed some juice and hurried husband and kids out the door, thankful that it was his turn to take them to school. Just as they left dexcom called to me again this time with 4 loud beeps to let me know that I was at 55 with a straight down arrow. This is when the real symtoms kicked in and I started feeding the symptoms (read: I ate the fridge)

Ugh.

I way over-treated the low, and by the time I left for work (once my bloodsugar was above 65 and rising) I was about 45 minutes later than usual. The day that had started off with a smile was no longer so bright!

The subsequent roller coaster wasn’t fun but things did settle down mid afternoon (7 hours of “perfect” overnight readings cancelled by 7 hours of pure frustration). At least I didn’t rage bolus for the rebound high.

Tomorrow is a new day.

Lessons learned (not that I’ll never repeat the mistakes though!!)

1. Be more careful when counting carbs and guestimating bolus.
2. When blood sugar is already on the low side (and possibly dropping), eat as soon as bolus is given.
3. Treat low then do something else or at least sit on hands for 15 minutes waiting for the low to come up. (15 minutes is a LONG time!)
4. If I still manage to overtreat the low, bolus straight away for the extra carbs eaten.
5. Forgive myself for not getting it right every time. Treat the low (and/or the high) and then get on with life rather than beating myself up for messing up that nice straight dexcom graph.