Don't Let Doctors Push a Pump on You

I've never told the story of the day that we chose Arden's insulin pump because it involves people that I love and who have done countless wonderful things for my family... f%&cing up.

But it's been a while and most of the people involved in the story have moved on to other places of employment... so what the hell.

Kelly, Arden and I stepped into the conference room at our children's hospital for a pump presentation. There was maybe a dozen families in attendance, each frightened, unsure and hoping for proper guidance. The people running the presentation spoke for a while, they taught us about pumping and then brought all of the different pumps out so that we could see them. Parents began to formulate questions, it was obvious to me by the trainers answers that they had their favorite pumps and were trying to lead people to certain devices.

Not wanting to be part of the folly, I went back to the demo pumps at the now abandoned display. This table was set up so specifically, like a display at a high-end retailer. Each pump was presented just so, documentation arranged off to their sides. It looked like the manufacturers sent a trainer, to train the pump trainers on how to make the pumps appealing. 

Beyond the table was in a misshapen corner of the room where the trainers had abandoned the packing materials. The mess caught my eye and when it did, I noticed a little white box with green and blue printing that didn't look like it belonged with the garbage. I walked over to investigate and found an Omnipod starter kit that contained a PDM and sample pods.

"What's this", I asked a trainer. 

"You don't want that", she replied.

Not being the kind of person that enjoys being told what I do or don't want, I responded with a bit of sarcasm, "Oh... why not?".

Then it happened, a person I was counting on to give me good advice, began just to say what ever they could think of to make me rejoin the group.

"Your daughter is small, you want a Ping" - "This one won't work on skinny kids" - "It doesn't have a small enough basal rate" - "You will be limited to sites" and my favorite, the scare tactic that they all love to pull out... "If you don't like it, you will be STUCK with it for four years because of (Cue scary music) your insurance... FOUR YEARS".

I didn't listen to her. I inspected the Omnipod and saw a lot that I liked. I saw different, innovative, the ability to change designs without having to repurchase and of course, I didn't see any tubing. We were sold and set off to show the pod to Arden so we could explain how it would work. In the time that we sat there talking to Arden, each trainer took a shot at scaring us into not choosing the Omnipod.

Fast-forward to two years later

Arden's Endo appointment ended and the NP asked if Arden could wait outside, she closed the door behind Arden and then said this.

"I wanted to take a moment to apologize to you..."

You see, two years prior at the pump training that I just told you about, the people in Arden's practice didn't have any experience with the Omnipod and they didn't want to be responsible for overseeing a device that they didn't understand. It wasn't the basal rate or a lack of sites that made each of them try to talk us out of what has become the foundation for how we keep our daughter happy and healthy. They weren't concerned medically and everything they said was one hundred percent horse shit. They were just covering their asses. Anyway, the NP goes on to tell me that because of the fantastic success that Arden is having with the Omnipod, the institution is going to start prescribing them to children. 

There are a few professions that we are conditioned from birth to revere. Police officers, teachers and doctors are the big three. You listen to police, you respect your teachers and you assume that your doctor knows much better than you - and I would tell you that I believe those things are true a lot of the time, but not all of the time. 

I tell you this story today because I recently heard about a family that was being forced away from a device that they wanted by their doctors. Medical professionals who defended their position with a lot "information" and "reasons". Doctors who took advantage of the patients desire to want to believe and listen to them – I deplore that. I've been around type I diabetes long enough to see this happen time and again and I wanted to offer you the moral support to trust yourself. I'm certainly not suggesting that all doctors are lying, or that every time you are prescribed something it's with deference to who the institution has business relationships with - but you know, it's worth considering.

You are the final word on what pump (or CGM) is right for your family. Do the research, ask the question and by all means take your medical teams advice seriously, but don't let anyone pressure you into a decision that you aren't comfortable with.

Stand firm the next time you feel pressured by your medical team to make a decision that you don't agree with but for all that is sacred, if a cop tells you to put your hands up.... please do it. ;)

If you're looking for a deeper conversation on this topic go to episode 124 of the Juicebox Podcast.

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Living Between the (Diabetes) Lines

Three questions that every person living with diabetes asks themselves...

How high is too high? How low is too low? How do I find the balance between long-term complications and having a seizure. 

Each of us has been given a range to aspire to. When Arden was first diagnosed, the doctor told us that we should be trying to keep her blood glucose value between 110 and 200 - "let's try to keep her A1C under 8.5", they said.

And so that became my goal.

Then one day they told us that we should lower the high range value to 190, at our next visit we agreed to try 185. The low range number was never touched. I understood what was happening even though it was never articulated to me, our BG goals were adjusting based on the vibe that our Endo got from us at each visit. She was evaluating our ability to handle spikes, lows, meals and overnights. I was being lovingly manipulated.

Then one day we discovered CGM technology and that little screen gave me something that I never had before, a visual representation of our goal. Now there was a line that I was trying not to cross. In the past when our goal was 190, 210 didn't seem like a huge miss and on the low end... even though we were trying for 120, 100 seemed so perfect that we didn't mind being a little low; besides many people, who don't have diabetes, regularly have a BG of 85 - of course they don't have man-made insulin in their system that doesn't know when to stop removing sugar from their blood.

I was living between the lines but I think the lines were holding me back...

I say holding me back because Arden's BGs were, for the most part, existing between them. I'm not talking about unforeseen spikes or unexpected lows. Highs and lows happen, you correct and move on, but you don't let them impact your impression of the graph. A few blips don't discount the rest of the day. Look at how the BGs are when you are blousing correctly, counting carbs accurately, when your basal rate is properly set. In those hours I was content if the graph line was mostly stable and in between 180 and 120. 

It took me quite some time to figure this fact out, but the comfort that I felt when we achieved BGs that were between those lines, was holding me back from trying to do better. I had been lulled into a state of acceptance.

The lines were also providing a false sense of security. Even though they were arbitrarily set by a person that I only see four times a year, I was treating them like gospel. Finally I wondered, "if I can successfully keep a BG under 180 why could't I keep it under 170? Hell, why couldn't I shoot for 140?".

So I moved the line and do you know what happened?

I kept her BG under 160. Then I got brave and moved her low threshold to 100. Today, Arden's low alert sounds at 85 and her high is set at 160, but this summer I'm going to move that to 150.

All of this doesn't work if you punish yourself for going outside of the lines. I am telling you, do not do this if you can't handle seeing the graph climb above, or below those lines - don't add stress to your already stressful day. Before you attempt to move the lines you must find peace with being on the other side of them, you have to come to grips with the idea that nothing in life is controllable to that degree. Here's how I found my peace with that truth.

I was happy if Arden's BG was 180 all day because someone told me that number was okay. Her BG still spiked, it still got low but for most hours of each day her BG was 180. Today, most hours of the day come with a BG of around 140. She still has spikes and still gets low but most hours are spent in our new range. It took me a while, but now I can see, there is no difference in how I manage or what I do; the only thing that has changed is my expectations and the way that I react to them.

When I expected 180, I got 180. When I expect 140, I get 140. I'm learning to except 90... one day I'll learn to expect it. 

When you're ready, move those lines... the ones on your CGM or in your log book, and the ones in your mind and heart. Expect what you want, except what you achieve and never stop moving the lines that life sets. Define your own reality.

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Don't forget to read my disclaimer, I am not a medical professional and I am not dispensing advice... just telling stories on the Internets, the WWW, the information highway - you get what I'm saying. Please also don't forget that high and low ranges are never one-size-fits all. While Arden feels fine when her BG is 85, you or your child may not. 

DexCom G4 Platinum: Second Look

Arden modeling her G4 tucked into her pocket.

Arden has been wearing the new DexCom G4 Platinum CGM for every second of the last month. I initially wrote a 'First Impressions' piece about three weeks ago - let's see how things have gone since then.

Sensor Life:

The worst kept secret in the DOC is that the DexCom sensors can be restarted at the end of their seven day life and often gain accuracy as the days go on. The package insert indicates that you have to change your sensor site at the end of those seven days, I am in no way suggesting that you should ignore that direction. I'm merely sharing how we do things... Many times in the past the DexCom 7+ would happily restart twice and would still be going strong as the last bit of adhesive was holding on for dear life. So far we haven't gotten a G4 to a second restart, but I'm not giving up on getting one into the three week range. Having said that, two weeks is really very good.

Adhesive:

Not as long lasting as the 7+. The G4 is not weathering showers like that 7+ did even when covered. I wonder if DexCom changed the adhesive, maybe I'll ask.

Form and style:

The reciever is a huge inprovement in both size and shape. I've heard a few call it 'unsturdy' or 'light' but we don't have that feeling. 

The sensor is slightly taller then the last generation. I've asked Arden multiple times if the size change is annoying and she has always answered, "no". Mindful that I don't wear the product I read about what some others have said and I did find a few adults that aren't happy about the increase. Again, Arden is unfazed by the change.

Signal Range:

I have for years been unable to let Arden sleep on the sofa during her sleepovers becasue I wouldn't be able to hear her CGM. Once I even slept on the floor so that she and her friend could 'camp out' in our family room, but that was so uncomfortable that since that day sleepovers are confined to the bedroom. Until last weekend that is. On Saturday night Arden had a friend over to spend the night, she asked just as she always does if they could crash on the sofa, I said yes without hesitation becasue of the G4. Our family room is underneath of our master bedroom and the G4 cruises through walls, floors and ceiling like they aren't there. 

As the parent of a PWD this new feature trumps any other and makes the Platinum a winner in my book. Here is my Instagram picture of Arden's G4 sending a signal through the floor of her bedroom and into our kitchen. Kelly and I were watching 'The Walking Dead' on AMC while Arden slept soundly in her bed. In the past, we would have to pause the show while I ran up and down the stairs like a loon. Now we just listen for the beeps.

@ArdensDay on Instagram

The Sensor Wire:

The insertion of the sensor wire seems less painful but the real win of the wire being smaller is that Arden doesn't seem to notice it under her skin anymore while she is wearing it. It the past with the 7+, Arden would sometimes be bothered by the wire if she moved the wrong way. 

Pound the Alarm:

The alarms on the G4 are louder then the 7+. Additionally, you can vary them if the one you are using ceases to get your attention. So far the default sounds are waking me from my slumber, though Arden never hears them when she is sleeping. DexCom has samples of the alarms on this page of their site (scroll to the bottom), if you'd like to give them a listen. 

Freedom:

With the new signal range comes freedom. In a movie theater I can hold the CGM to give Arden a break. When she gets home she can take it off and roam the house without fear of dropping the signal. Arden sleeps upstairs, we live our life downstairs. I wish you could have heard the lilt in Arden's voice when she gleefully told me, "I just peed without my CGM", she was seriously thrilled that she left her receiver in the kitchen while she used the powder room, thrilled! Connected but frequently untethered is a major advancement in my opinion, it gives back some of Arden's humanity and releases burdens. 

Wrap:

I know of a couple people who have experienced build quality issues, for example Stacey's thumb pad fell off. So far we haven't had any such isues, but be sure that I will tell you if we do. 

I've always been an early adopter of technology that I believe in. I expect a few bumps along the way and take the chance on something new when I think the chance is a good bet. So far, the G4 has been a terrific bet. Wait until you see the signal range and how it changes your life.

Be Well!

Update on 2012-12-03 16:24 by Scott Benner

This post is a follow up to First Impressions: DexCom Platinum G4 which can be found here.

OmniPod Rash?

If you've ever experienced a rash under your OmniPod, CGM or infusion set adhesive, read on.

Before I begin I need to say that I'm not a doctor and you should never confuse me sharing my experiences with health care advice. Never make adjustments to a care plan without first checking with your physician.

In the summer of 2010 Arden began to develop a rather severe rash under her OmniPod. I was confused because she had been wearing her OmniPod for a rather long time with no issues and it seemed random that she would suddenly have such a reaction. I turned to the internet, called Insulet and was presented with a number of "solutions". My problem with the answer that I was given was that it included buying more stuff and it complicated the pod application process. I really believe that the simple answer is often the best, so I held off on putting the conventional fix into practice and took another shot at diagnosing the issue myself.

Before I could put my thinking cap on I noticed that I was rubbing my finger tips against my thumb and that my finger tips were sore. I looked at them and saw that they were dry and begining to crack. I drifted away from Arden's issue momentarily to wonder about my own and then it hit me - I'm always touching alcohol swabs, that's probably why my fingers are so dry.

That realization led to an epiphany and suddenly I (thought) knew why Arden was developing rashes. At Arden's next pod change and every DexCom and OmniPod application since, I have cleaned Arden's sites with warm water and a clean towel - nothing else. Not only has she never had another rash but her pods don't stick to her like they've been cemented on when it's time for them to be changed (don't worry, they don't come off prematurely).

Turns out for Arden, chemically wiping away the oil that her skin makes naturally and then covering the area with an adhesive strip, wasn't a good idea.

I've shared our process with Arden's endo NP. She wasn't thrilled that I stopped disinfecting Arden's sites before poking a hole into her but she does acknowledge that we may have had to discontinue using Arden's pump without this adjustment. For us it's a calculated risk, you and your doctor can decide if it's the right thing for you to do. I wish you much luck!

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