Where I'm At With This…

img-530pumpIt’s been almost two months since I began the trial with the Medtronic MiniMed 530G System with Enlite. I’d like to tell you where I’m at with this…

Truth?

I don’t know where I’m at with this.

The Medtronic customer service is phenomenal. Mostly phenomenal.* The Medtronic trainer has followed up with me and checked out my Carelink updates, giving me suggestions to improve my experience. The StartRight representative has been helpful.

My graphs and reports are, frankly, abysmal. My weight is up three pounds (and as an individual with food/weight issues, you know that doesn’t make me happy) and my A1C rose 0.2%, which may not be much, but I wanted it to go in the other direction. My CDE’s comment to me when she walked into my appointment was: “What is going on? These can’t be your numbers!”

Threshold Suspend

Here’s the thing I like about the Medtronic MiniMed 530G system with Enlite: Threshold Suspend. It does work.

Except when it doesn’t for me.

There have been nights that the Threshold Suspend feature is activated. My blood sugar is 104 mg/dl when I check. I shut off the suspension and restart my basal. It alarms again. By this time, I’m up, out of bed, trying not to wake John, and angry that the pump is waking me up for no reason.

Twice in the past month, it has legitimately suspended and I’ve treated, thankful that it woke me. I’ve yet to sleep through an alarm. (Man, that alarm is loud.)

But I’m finding, for me, that the noise from the alarms compete with the noise in my head over my blood sugars. I’m questioning constantly whether the numbers I see on my MiniMed 530G insulin pump are accurate. When they are, I breathe a sigh of relief. When they’re not, I breathe a sigh of frustration.

That’s a lot of sighs.

I love my Medtronic MiniMed Revel. I’ve said that before. Medtronic has been very responsive with every issue I’ve had with the Medtronic 530G with Enlite system. (The CareLink issue? That’s another story. Quick side note: I’m hearing from others that I’m not alone in my frustration with CareLink.)

My goal with diabetes management is to keep blood glucose levels within my prescribed range while minimizing the intrusion of diabetes into my daily life. (It’s a Hurculean task some days, but others…) The technology I choose to use is meant to help minimize the intrusion.

The Medtronic 530G with Enlite is designed to help minimize the severe hypoglycemic episodes with Threshold Suspend – and it does when the accuracy of the Enlite sensor is working correctly. I’ve had meter readings of 45 and my Enlite sensor is telling my 530G pump that I’m 82 (and the arrow is not trending down). I’ve had meter readings of 64 and my Enlite sensor is telling my 530G that I’m 64.

It’s Me. But is it?

The rise in my A1C is because I’m over treating when I go low. I know this now. I didn’t over treat quite as frequently before I began the trial, because I could see the fall easily on the CGM transmitter of my Dexcom. It’s not as easy to see that on the screen of the 530G pump.

I’ve had to turn off the predictor high and low alarms and the high and low range limit alarms for my sanity. That, for me, lessens the ability of this technology to minimize the intrusion of diabetes into my daily life.

Others are not having these issues and perhaps it’s because their diabetes management is better controlled or their own diabetes is not marred by delayed gastric emptying or quirky days. I’m still not giving up on getting this MiniMed 530G with Enlite system to work for me.

Anyone have suggestions?

*The customer service issue I had? I called in on a weekend to get a few sensors replaced due to sensor errors. I spoke with technical support, who made some less than supportive remarks regarding how I was trained by my trainer. Not cool.

I was also told that when the pump tells me to “BG NOW” to calibrate, I should wait 10 minutes if I’m not stable… which to me says that the pump shouldn’t say “BG NOW”… and if you’re not trained properly or don’t know better, your readings are going to be inaccurate. But when you get a BG NOW for the first time during the wetting period, after two hours, if your blood sugars are fluctuating slightly up or down, how are you to know? These questions have me up at night…

 

A Beeping Mess

headphonesI’m a beeping mess right now.

And beeping is not a substitution for an expletive, although it could be. Since my trial of the Medtronic MiniMed 530G with Enlite, I’ve become my own electronica band, beeping melodically throughout the day and night. No rhyme or reason, thus no rhythm at the beginning, but I’m starting to see some trends.

The MiniMed 530G with Enlite has a unique feature beyond the Threshold Suspend (The pump suspends if the Enlite sensor says your BG reading is below your “low” threshold.). It has a “predicative high” or “predicative low” setting, which will warn you if the algorithm believes you are going to go outside of the ranges you have set. When we did the initial setup, I put my low range at 80 mg/dl and my high at 200 mg/dl. (I drop pretty quickly, so I’m trying to catch it before I get to that point where I am not thinking straight and ignore the sensor readings in favor of…well, anything, because I think it my blood sugar will come up on its own while I’m walking around. Hint: it doesn’t.)

It is the new equipment adjustment period or is it my body? The food choices I make? (Pizza, oh pizza… I love you, but that 400 mg/dl? Even my broken pancreas rolled its eyes.) I beep, look at the pump, and it says that a low is predicted, yet less than ten minutes later, it says that a high is predicted. I’m still not used to the arrows that are on the MiniMed screen and everything is pretty wonky overall. But I’m learning, and that’s the point of this trial. I will figure this out.

The accuracy is not really in question at this point. How do I know? Because along with the MiniMed 530G with Enlite, I threw my Dexcom G4 sensor onto my arm on Thursday. There have been several times when both the 530G and the G4 have buzzed and beeped at exactly.the.same.time. If there’s any inaccuracy issues, I’ve found that sometimes it’s the G4 and sometimes it’s the 530G, but neither one is perfectly accurate all the time. Thus is life.

I haven’t had a night in which beeping hasn’t woken me up. The Threshold Suspend alarm has gone off, only to check my blood glucose level and find it to be a beautiful 110. Other nights, I’ve woken myself up and I’m low, except the 530G hasn’t caught it. (Until a few minutes later when I’m standing in kitchen over a glass of juice.) That’s been frustrating, along with the lack of response by the system to recognize that I’m coming up from a low, insisting that despite my canceling the threshold suspend, it throws up another beep and alarm and threshold suspend less than 10 minutes later.

John and I have had several discussions about the “is it me or the technology?” He maintains that it’s the technology, and to a large degree, he’s right. I need to train the technology to work with me… and I am also recognizing that I need to begin basal testing again. (It’s springtime in Paris and my insulin regimen. Hooray!)

I’ll have to adjust the predictive settings as well with the trainer, so that I can cut down on the beeping. I do find that it causes undue stress (and I’m full up on stress, thankyouverymuch) and worry that I didn’t have before.

So, if you need me, just follow the beeping. I’ll be dancing with the glowsticks in the corner.

The Ca-Chunk Factor: MiniMed 530G with Enlite

The Enlite® serter, the device patients use to insert the Enlite® sensor beneath the skin, was designed with patient comfort in mind. With a simple insertion process, it inserts the sensor at a 90-degree angle using a completely hidden needle.  Courtesy Medtronic, Inc.
The Enlite® serter, the device patients use to insert the Enlite® sensor beneath the skin, was designed with patient comfort in mind. With a simple insertion process, it inserts the sensor at a 90-degree angle using a completely hidden needle.
Courtesy Medtronic, Inc.

Control. It’s a concept that people with diabetes wrestle with… control over what we eat, our blood sugars, our lives in general. When you’ve done everything in your power to keep this disease in check, and yet, you see a high (or low) blood sugar on the meter, it’s frustrating.

So, I take control whenever I can in my diabetes, which includes needle insertion. I’m not a huge fan of “auto-insertion” and never have been. From my very first injection in 1983, I would slowly insert the needle into my selected spot. If I was halfway in and it began to hurt or I felt a twinge, it wasn’t uncommon for me to pull the needle out and start in another spot. Quirky? Guilty as charged. There are times that I am jealous of those who jam a needle in and quickly inject and move on, but I prefer having control over at least, inserting the needle. I use a Silhouette insertion set for my insulin pump because I can insert it manually…under my control.

The Medtronic Enlite® Sensor uses a insertion device that doesn’t allow for the rate of needle insertion. (The Dexcom G4 sensor insertion device uses a plunger, so yes, I totally take my time pushing that plunger down.) I didn’t have a positive experience with the Sof-Serter sensor insertion and truth? Freaking out about putting in the Enlite®  on Friday was actually raising my blood sugar. I was… scared. What if it hurt just like the Sof-Serter? What if the needle hit a spot that was tender and it bled? What if it came time to put that inserter onto my skin and I chickened out.

The Ca-Chunk Factor

Then there’s the Ca-Chunk Factor. That sound that the inserter makes when the mechanics release and the spring load snaps and something happens. If you’ve had diabetes for a while, you’ll remember the “Ca-Chunk” sound with the Autolet lancet device (a.k.a The Guillotine). I dread that sound. Sends shivers up my spine. I sweat a little in anticipation.

I had my training session with the Medtronic trainer on Friday and after the polite introductions, I spilled my guts. “I’m scared about the insertion pain and the accuracy and the Ca-Chunk Factor, but right now, it’s the insertion pain. I’ve been told that it hurts much less than the Sof-Serter, but I have nightmares about those insertions, so…”

Lisa, the trainer, was incredibly cool about it all. (I think I may not have been the first to express these fears.) We talked about the difference in needle gauge sizes (the Enlite®  introducer needle is significantly smaller) and how many individuals had expressed surprise at how comfortable the sensor felt after insertion. She asked me to explain the Ca-Chunk Factor. She offered to have me practice using the inserter, but I took a deep breath and said: “Let’s just do this.”

Here’s how the insertion of my first Enlite® Sensor went for me.

Lisa: “You don’t need to pinch skin at all. Just place the inserter directly onto the skin and don’t press the inserter hard. Most people find it comfortable to stand up when they do the insertion.”

I nervously stand, whipping my shirt up and searching my abdomen for a spot that would have the least potential for an “OWW!”.

Me: “OK. Wait! Where should I have the green button?” (The green button is what you press and release to insert the Enlite Sensor.) I turn the inserter around on my abdomen, trying to find a comfortable way to hold it and the button and begin to feel that sweat beading on my forehead.)

Lisa: “When you’re ready, press the green button.”

Deep breath. Moment of truth. I push the green button.

I think to myself: ‘Wow. She was right! That didn’t hurt at all! Jeez, I have no idea why I was freaking out about this.’

Lisa: “Now, release the button.”

Me: “No problem.”

As I released the button, I heard…

“Ca-Chunk.”

I had been fooled by the Medtronic Enlite®  Sensor serter. It drives the needle in upon the release of the button, not the push. And because I was lulled into the concept that I had already done the hard part, it came as a surprise. What was more of a surprise was that it didn’t hurt when it really went in.

My first fear – squashed. Annihilated. (Next week when it’s time to put a new sensor in? I’ll have to trick myself, but I know it won’t be as painful as I thought it would be.)

After the insertion process was complete (There are more steps, including a complicated process of taping the sensor down onto your skin…), I told Lisa that I had been duped by the inserter. Happily duped.

Right now, a few days into this, if you asked me where the sensor was on my abdomen right now, I’d have to think hard. No pain. No twinges. (I’ll talk about the accuracy in another post.)

Control. I could give up a little for this…

 

2014 Diabetes Advocates Forum: Part 2

medtronic-14As I said in my previous post about the Diabetes Advocates Forum, we heard things from Medtronic and we also heard things from each other.

It took very little effort to transcribe the few notes I took about the technology aspect of the Medtronic Diabetes Forum. The difficulty I have in sharing (more than my initial thought) what those in the room said to each other comes down to this:  I am still processing what it means to us as a community and to me as a person.

Brainstorming

The afternoon of the first full day was spent in a brainstorming session led by Bennet Dunlap, George Simmons, and Scott Johnson. Rapid fire, small groups, top answers. We made fast work and faster decisions about what we saw as ways to use social media and our voices, but one of the questions (and one of the brilliant answers given by Sara Nicastro) caught me off guard.

To paraphrase, the question was this:

“What can you, as an individual, do to help the community as a whole?”

Sara’s answer stunned me. “Get the F* offline.” (If you know Sara, then you’ll realize that she doesn’t curse. She used the notation F* to mean exactly how serious she was, but she didn’t actually use the expletive.) Sara is heavily involved with her local JDRF chapter and did an incredible job fundraising for the JDRF walk. She recognized her strength and is looking to bring that spirit to her local offline community. (While spending a ton of time sharing her talents online as well. I’m in awe of people like her – and her.)

Others shared their thoughts and ideas and we came up with a doable list, although it won’t all happen at once or even this year. I see each of the ideas forming into concrete plans broken down into workable pieces, some of which will take funding while others will take people power.

The Ask

The second afternoon was handed over to David Lee Strasberg of the Lee Strasberg Theatre and Film Institute. He’s a T1 and a T1 parent, so he’s part of the club that no one wants to be in…two clubs, in truth. Strasberg’s father, Lee Strasberg, trained a lot of the great actors using the “method acting” technique and his methods continue today. David used his skills and talents to teach something that may seem simple, but isn’t: asking.

According to Strasberg, there are four steps to asking:

  • Build the Relationship,
  • Share the Vision that connects you with the others in the relationship,
  • Communicate the Opportunity that is borne out of the Vision, and then…
  • Ask.

The room buzzed as we participated in various exercises to see how these four steps could be accomplished  and then it buzzed even louder as the group put it into action. The Spare a Rose campaign is coming up again and ideas on how to kick it into high gear whizzed around. People threw out suggestions while others grabbed those suggestions, saying: “I got it.” It was electric. Magical. Inspiring.

That’s what happened at the meeting when the advocates there talked to one another.

Vexed Introspection

As all of this was happening, I got introspective (and apparently my face looked “vexed”, according to Kerri). My head veered into a dark space, where I recognized that while I have no problem with “the Ask”, I completely and utterly suck at the Relationship part of the equation.

When I worked into an office environment, my staff knew that they didn’t need to couch their requests or build up to what they wanted. When they knocked on my door, they were ready and fired away. That’s how I liked it. We were all busy and they knew that I trusted them to get stuff done, so if they needed something from me, they got it (if it was reasonable and within my power). I’ve been told that I can be assertive and a bit abrasive. My filter to social niceties can be warped at times.

It’s not always like that in the world, of that I know. For as forward and raucous as I can be with my friends, I’m not big on small talk and feel awkward in some social settings. (In fact, it happened at the forum. There were people I wish I had gotten to know better, but I flunked the “put yourself out there” portion and missed a lot of opportunities.) I’d much prefer to be plunked on a stage in front of hundreds of people, as I’m more comfortable sharing and baring my soul (and my requests for help) when I don’t have to look into the eyes of the other person.

So, my answer to the question about what I can as an individual to help the community as a whole is to work on the Relationship building. I’ve got to reach out and connect with other advocates, people in the diabetes space, and government. It’s a scary proposition and challenge for me and one I know will take a lot of effort on my part. But it’s worth it if building a relationship helps the community as a whole.

Community

Every single person who attended the Medtronic Diabetes Advocates Forum is talented and extraordinary, including the members of the Medtronic Diabetes team. It’s my hope that as we build relationships with each other to create a groundswell for diabetes advocacy, we build friendships and learn from each other as well. I couldn’t do any of this without the inspiration and support from the entire community and the champions that sat in the room (and many of those who were virtually there).

Asking is easy for me, so I’m asking this from you: Help me learn how to build strong, lasting relationships that can help this community be a undeniable force. 

(And help me achieve better blood sugars. Wait. Is that asking too much?)

 

 

It Ends With Us

1218864_75194824It ends with us.

Whether you physically sat in the room at the Diabetes Advocates Forum or joined us there in spirit, I tell you now. It ends with us.

We will be the ones to end the feelings of frustration with diabetes, the barriers to affordable access, the misconceptions of this disease, and in the future, the disease itself. However long it takes, whatever needs to be done, it ends with us.

After two days of intense, emotionally-charged meetings between key members of the Medtronic Diabetes team and invited diabetes advocates, this phrase is what remains in my head.

It ends with us.

Bold statement, you say. Brash statement, you say.

About time, I say.

I understood before the meetings began that we would be discussing the new Medtronic Minimed 530g with Enlite and discussing diabetes advocacy, but beyond that, no clue. I knew that Medtronic Diabetes and Bayer HealthCare had selected members of the diabetes online community (DOC) regardless of insulin delivery system and CGM choice. (You heard Dexcoms  and different beeps and boops going off throughout the sessions. Ahh, the sultry song of diabetes.)

Those who attend as well as those who don’t often wonder why these individuals were chosen to represent the diabetes contingency. (I see the questions on Twitter and the comments on blogs and other social media portals.) I still don’t have an answer on that, but we all had one thing in common: passion.

And that passion wasn’t just coming from the advocates. It came from almost every person I encountered with a role at Medtronic Diabetes. They do want to know what we think, not just about their products and how they present them (and we didn’t disappoint in our answers, believe me), but about how they can help. Not air quotes help, but real how-can-we-use-our-voice-to-help.

Not once did they try to sell us something. Not a product or a line or lip service. The Medtronic Diabetes representatives were frank and forthright, matching the honesty of the attendees. I heard apologies for missteps and long waits for better CGM sensors for their products. I heard requests for better ways to communicate. I heard agreement towards greater participation with advocates to reach goals.

There was laughter. And tears. And a lot of beeps. We all scribbled on notepads and tapped on smartphones and laptops. Sessions occurred in which decisions about future advocacy initiatives were identified and visions questioned for clarity. Some of my moments of ah-ha! came not in the meeting, but in sidebar conversations. Advocacy happens everywhere.

I’ll get to the nitty-gritty of what happened in later posts, but I flew home with that feeling in my gut that burns deep.

It ends with us. All of us. Not just advocates, but everyone who is passionate about ending. That includes Big Pharma and device manufacturers and government. Us. There is no longer a “them”.

And in order for it to end with us, it has to begin with us.

Get ready, because…

It ends with us.

Medtronic Diabetes and Bayer HealthCare paid for my travel expenses and meals in connection with the Third Diabetes Advocate Forum where we discussed online and offline diabetes advocacy as well as Medtronic products and therapies such as MiniMed 530G with Enlite. I have received no compensation from either Medtronic or Bayer in exchange for writing this post and the opinions I am sharing are my own.