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…

 

Diabetes & Personal Space

Different cultures have their own idea of “personal space”. I’ve lived in other countries and worked in companies where my own concept of “umm… you’re a little too close…” has been questioned. It’s a matter of how you were brought up and how comfortable you are in your own skin combined with the ability to be perfectly fine with someone standing very, very close to you when having a business discussion.

This isn’t an anthropology blog (although, really, aren’t we all studying human behavior in relation to diabetes, so…), but I am starting to feel like my personal space is being invaded and I don’t like it.

I’m a hugger. A snuggler. A squisher and a giggler and a tickle monster when it comes to my daughter. I am sometimes the instigator but as The Kid has grown older, she wants to attack me with the same happy ferocity and fire the first shot across the bow of runaround shenanigans that I used to incite. And the sensors and infusion sets on my abdomen are getting in the way… and they hurt. And that hurts me.

The real estate I have on my body is limited (seeing as I’m limited in stature and subcutaneous tissue locations). The current trial I’m conducting with the Medtronic MiniMed 530G with Enlite only allows placement of the Enlite sensor on my abdomen. I had three failed sensors last week. Three. Every time one failed, I had to find a new place to put the next one.

I am placing my infusion sets on my upper abdomen to stay out of the way of waistbands that chafe. I’m reluctant to put the sets anywhere else (I rip them out of my arms and legs far too easily, even with taped down tubing), but I’m thinking I may have to rethink things here, because…

I’m running out of my own personal space because of diabetes.

braveheart-crazy-faceThe worst part of this all is the reaction that I have when The Kid comes barreling straight for me, screaming wildly (causing me to have Braveheart flashbacks) for a hug… I tilt my abdomen inward as if pulling away from her. To protect the sites in the small space I have to use, I sacrifice the full body hug that I want to give. Every time I lift her up, I must be careful not to scrape her legs against my abdomen. Tickle war on the bed begins with a “Careful of my pump, sweetheart…”

And of course, I know that I have options. Take all the diabetes gear off. Go back to MDI and no technology. I understand that I am lucky. The technology has kept me alive and healthy so I can complain about not being able to hug The Kid as tightly as I want… and I hope I’ll be able to continue to complain about that long after we send her off to university. By then, I am sure it will be she that complains that I am hugging her too tightly.

But today, diabetes is invading my personal space. The space that is sore from repeated pokes and prods and insertions. How do I tell it politely to step back?

I have no idea.

 

Sometimes It Is My Fault…

Minolta DSCIt was an idyllic day yesterday. Good cups of coffee, a happy daughter, jovial husband, and a trip to the park. The light breeze complimented the sunny warmth and I felt…content.

“You want to go get some ice cream?”

I like ice cream. With some foods, I never quite know what will happen with my blood sugar (i.e. pizza or a bagel), but I SWAG (Scientific Wild Ass Guess) for ice cream with a confidence that I rarely have with other sweets. So, the answer was a resounding yes and with The Kid firmly set on John’s shoulders, we marched a block to the local ice cream shop.

Peanut butter fudge ice cream with peanut butter sauce. Small cup. BG was going up a little (Snacks at the park – Pirate Booty), but manageable. I dosed and enjoyed every minute of that peanuty goodness. We walked back to the car, chattering away about birds and cars that go beep. I checked my graph on the Medtronic MiniMed 530G and it was stable.

The freefall happened within 20 minutes, and it was my fault. The idyllic day called us outside and an impromptu walk around our neighborhood. The magic number said 173 mg/dl with two arrows pointing down. We weren’t going far and weren’t going for long. A casual meander. Fifteen minutes later, it said 82 mg/dland I was not feeling content anymore. We got home and as we walked through the door, the alarm started to chirp. BG 72 mg/dl and falling. Meter said 62 mg/dl and I said juice. Drank it. Felt better.

It was my fault that I didn’t suspend the pump. It was my fault that I didn’t check 15 minutes later. It was my fault that I snuggled down into the couch and began to watch TV. I got sleepy. Thought I needed a nap. Stood up, waved at John and motioned to our bedroom, mouthing that I was going in.

Did I check before I went in? Nope. But the alarm kept going off on my pump and I ignored it. The threshold suspend feature kicked in and through my haze, I realized that this was not a drill.

I vaguely remember wandering into the kitchen, walking past my family and pouring myself a glass of juice. I was intent on getting “just eight ounces” into the cup, holding it up to analyze my measuring capabilities. I didn’t guzzle it down, but casually sipped at it as if I was at a cocktail party and didn’t want to pay $10 for another drink. John’s voice was fuzzy…or was it me that was fuzzy?

“You OK?”

“Oh, yes. I’m fine. I’m not fine. I’m low, but I’m fine. I’m drinking my juice and I’m going to be fine.”

He knew that I wasn’t fine. He verified that the pump was still suspended and told me that he’d come back in and check on me in ten minutes. (He checked on me in five minutes, but was in the next room in case I needed him.)

I drank my juice. I ate some things. I came up slowly. I shuffled past my peeps and back into bed, mumbling that I was tired but my blood sugar was coming up.

And up it did. You know the drill. Overtreat. Bounce. Soar. Dose a few units to stop the rise past 400 mg/dl.

When I went to bed, my blood glucose was 132 mg/dl.

Threshold suspend happened again around 2am. 54 mg/dl.

It was my fault. I take blame for this one for my choices of nourishment and my failure to check. I thank the pump for catching not one, but two sucky hypoglycemic reactions in twelve hours. (And yes, I know about the increase of more hypoglycemic reactions after a serious low. It’s my fault that I didn’t take more precautions when coming down.)

So, this morning, I’m running on fumes. And a BG of 97 mg/dl.

This disease is not my fault.

My choices are my own, and when they’re incorrect and cause issues with my disease…

it’s my fault.

 

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.

Medtronic CareLink and Browsers of Yesterday

516892_68656024On the FAQ pages of Carelink. it plainly states:

Which web browsers can be used to access CareLink Personal software?

The system is currently validated to work with Microsoft® Internet Explorer® version 7, 8 and 9, Internet Explorer 10 Desktop, Apple® Safari® 4, 5 and 6, and Mozilla® Firefox® 5.0.1. Other browsers might still work although Medtronic Diabetes is not able to guarantee proper operation of those browsers.

 

I use a Mac. (According to Dexcom, I’m already a complete loser, as their CGM software won’t even run on a Mac unless you use a PC emulator program.) I have two browsers downloaded on my system: Safari (which comes standard on most Macs) and Firefox (which is easily downloaded and what I use occasionally for some banking transactions that demand Firefox).

I know that CareLink works on a Mac, because I’ve uploaded my pump data before on this laptop. So, the other evening, when I needed to upload data so that my trainer and I could look at it together while talking on the phone to adjust settings, I thought it would be easy.

I got this screen when I went to Medtronic’s CareLink link on their website:

Screen Shot of Safari Browser

My Safari was “too up-to-date”, so I couldn’t access CareLink through that browser.

Well, shoot. OK. Fine. I’ll fire up the Firefox browser I have… Version 21. (Not Firefox 5.)

Too up-to-date.

And by the way, if I wanted to download Internet Explorer right now, it’s IE 10 – or 11. And wait, they don’t have a version for Mac.

Frustration

If I didn’t have an amazing husband who is a web developer and happened to be home and was willing to sacrifice a pocket protector to the Geek God, I would have been not been able to upload my data. (He somehow configured something and magically, I have a Firefox browser that is…workable.)

I was able to examine the data that I uploaded, but I can’t imagine how frustrating it must be for others who expect that along with the latest technology they get from Medtronic, they get an upload system that will only work with the browsers of yesterday.

Yes, I expressed my opinion to the support team at Medtronic. I was polite, but I did use the phrase: “Unacceptable.” People who know me smile, as that means I’m pretty angry.

Will they do anything? Time will tell, which is pretty much been my phrase about this experience. What I do know is that it takes just one web developer to fix it and make sure that it works with all systems when there is an upgrade… I’m sure they can spare someone in their IT department.

Like I told you before, Medtronic, while allowing me to trial the system and all that comes with it, does not expect that everything I say will be rainbows and glitter about my experience.

The diabetes community talks incessantly (and I believe, sometimes to the wall) about the crucial need for integrated technology to make our lives easier to manage our diabetes. The Medtronic MiniMed 530G with Enlite is an integrated pump and continuous glucose monitor (and that threshold suspend, which I’ll write about soon… promise), but it’s an utter fail if you can’t use the browser… or two browsers…. or system… that you have to review the data and reports. Fail. (It’s not just Medtronic… Dexcom has failed me, too.) What good is the data if you can’t get to it?

Parting Thought

Heads up, Medtronic IT department. Please update your CareLink application and browser compatibility. (I’m not going to even talk about Chrome, which you supposedly don’t support at all…)

P.S. I’ll write about the actual reports that CareLink provides in another post. They do deserve a post of their own. But jeez.

Come. On.