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ADVOCATE: n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.

It’s really not very hard … and it’s really important. After all, who’s more important to your own life than you? It is survival.

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21th Annual Shooting Stars JDRF Walk to Cure Diabetes Sunday, October 23, 2016 in Newport Beach, CA at The Waffle House

For a contribution of $50 (or MORE!), walkers will receive a VERY COOL Shooting Stars Team T-Shirt while supplies last. Contact Joanne if you are interested in attending the event. joanne@TheSavvyDiabetic.com. To donate on-line, please go to: http://tinyurl.com/z5c2x8e.

Savvy Guest: Looping Update by Jessica Ching

I’ve know Jessica for many many years … we go way back and we were about the first T1’s to start on Dexcom STS, first generation.  Jessica went on to work for Dexcom and then Abbott (when they were selling the Navigator CGM).  She’s now a technology consultant based out of Berkeley.  Her comments are excellent and I must tell you, she manages her diabetes with a great deal of technical skill and attention.

 

Jessica’s Take Away after 3 or so months of looping with the RileyLink

The Good:  

 Average has dropped about 5-10 points (not much, but it’s a bit)
 Time spent above 160 reduced by more than half (now around 13% vs used to be 29%).  That is awesome
 Less swings; std deviation was 52 but is now 36.  I think this will improve, even before we take the next step

The Bad:

I spend a lot more time managing diabetes, mainly because RileyLink goes from online to offline throughout the day.  So I have to constantly be checking on it.  If the red circle was there for a while sometimes I manually compensate (I couldn’t agree with her more.  It does require a lot of attention and rebooting and retuning.  But I am reminded that this is still a do-it-yourself project!)
Pump battery only lasts 5-6 days.  I’m using cheap Duracells from Costco.  (Very true … I’m trying to make my AAA battery in my Medtronic 723 last 7 days but just barely.)
Exercise is problematic as my basal manipulation pattern for exercise doesn’t work any more.  My software partner told me he thought it was because my body was accessing and using glucose differently. My goal is to tell Loop up to 4 (?) hrs in advance when […]

Savvy LOOPing: their language!

I am far from even being semi-technical but I can, very slowly following instructions and ask questions kindly, always saying please and thank you. 

But I just saw an exchange on a site about figuring out how to break the codes on other pumps:
This week, there’s been some discussion on the Slack channel about how to get a bit deeper into the radio packets involved in the communication protocol. I’m semi-technically literate, but no where near the group of folks that are actively banging away on this problem, so I asked for an explanation of the current problem. Dan was kind enough to reply: 
Think of the radio packet like an onion. it has several “layers.” the network layer is the outermost layer. we understand all of those fields. inside that layer is the data layer, which we understand many of the commands and fields. but there are a few bits of data that are used to verify the integrity of the command. think of this like a wax seal from the middle ages, used to verify the integrity of a letter from a king. we need to be able to re-create that wax seal, (the verification bytes) in order to reliably craft packets of data which the pod will accept.  
There is an algorithm, which we think is a CRC style algorithm, that is used to generate that wax seal. I believe it’s a 16-bit CRC. Pete has pointed out that there is some “bit-masking” going on, which makes it hard to crack.
Got it?!  Me neither, only a bit.  HOWEVER, I am EXTREMELY grateful for these passionate, dedicated programmers/hackers for good to help the D community.  I don’t know most of them but I love them […]

Afrezza, the Amazing Inhalable Insulin

 

I’ve been using Afrezza intermittently for the past 2 years … and am continually amazed at how well and how fast it works! 

What is Afrezza?  Developed by Al Mann (who also developed the insulin pump and the cochlear hearing implat, among many other great advances – see a tribute to him in my blog archives), Afrezza is the only inhalable insulin available on the market today. 

Afrezza is dried human insulin produced in a lab from recombinant DNA. The powder is placed into carrier particles (called Technosphere particles) that are so small that once inhaled they can reach your deep lungs, which have the surface area of about half the size of a tennis court.

Just take a moment and visualize one side of a tennis court … that’s the amount of surface that is reached when you inhale Afrezza into your lungs. 

It comes in 4-unit, 8-unit and 12-unit cartridges, which equate, roughly, to 2.5U, 5U and 7.5U of liquid fast-acting insulin. 

 

 

But there are very distinct advantages:

Enhanced absorption: this is due to the very large, accessible surface area within the alveoli of the lungs
Rapid onset of action: Since the lung tissue consists of a large alveoli-capillary network, protein molecules such as insulin cross a thin barrier formed by the alveolar wall and the capillary wall, allowing for rapid delivery into the bloodstream.  Indeed it starts working within 10 minutes of inhaling and is mostly out of your system within 2 hours (as opposed to injectable insulin with an onset of 1/2 hour and duration up to 4 hours)
Absence of digestive enzymes that can inactivate insulin

 

 

On the downside:

About 1/4 of patients using Afrezza have reported a cough
Some decline in pulmonary function

My take on using Afrezza:

I think Afrezza […]

Savvy LOOPing: Running Open Loop

Here’s my LOOPing update.  I’ve been running the RileyLink for about 8 weeks.  I started running it OPEN, which means that it is ON but not making and implementing decisions with my insulin pump, based on the algorithm and CGM and carb inputs.  After about 2 weeks, I CLOSED THE LOOP!  Just overnight!  It was exciting.  NOTHING BAD HAPPENED!  In fact, my blood sugars seemed to run flat all night, between 100 and 140.  A miracle.  The next few nights were more bouncy but still good.  I never had a low while running the OPEN loop. 

About 3 weeks ago, I decided that I needed to tweak my pump settings, which haven’t been re-evaluated since I started pumping over 14 years ago.  And I think I may have entered some wrong settings when I was setting up basals on a new pump (I mean, really, how can my I:C ratio exactly equal my Insulin Sensitivity?!?!).  So I’ve been basal and ratio testing.  After all, GIGO (garbage in, garbage out) … I need to be sure the LOOP has as accurate settings as possible. 

I expect to CLOSE the loop soon … just running it CLOSED sometimes through the night. 

My take on using the CLOSED loop so far:

It’s safe!
It’s interesting to see how many corrections it makes throughout a 24 hour period
Seeing my data on Nightscout is a WEALTH of information.  THANK YOU, Nightscout folks for all the hard work you’ve given to make our lives better, using our own data!  #WeAreNotWaiting.

More to come on how to test your settings. 

Medicare CGM Saga Continued

I am not trying to stir the pot of frustration about Medicare and Dexcom … but here goes.

As I mentioned, Dexcom absolutely CANNOT sell me any product, for cash, because my file shows that I am covered by Medicare.  Even if I just want to BUY a transmitter CASH, the answer is NO.  They are referring everyone over to Liberty Medical Supplies in Port St. Lucie, FL, only open from 8am-5pm EST. 

I finally was able to get to my desk early enough to call them today … and I sat on hold for 42 minutes.  I finally reached a lovely rep named Liana (they’ve all been very pleasant).

 

Here’s today’s scoop:

I first had to register as a new patient with Liberty … no problem, as, for some reason, I was already in their database?!
Then they will request a new prescription from my endocrinologist … also no problem, even though there is one on file with Dexcom.
Next, she emailed me the ABN (Advance Beneficiary Notice of Noncoverage) form.  AHA, there’s where I learned a lot!

Medicare will cover orders as follows:

Dexcom G5 Kit, a 90 day supply for $745.14, which may include

1 Transmitter
3 boxes of sensors
4 boxes of test strips, 2 meter batteries
1 blood glucose meter (brand unidentified), even if I don’t need one

Dexcom G5 Receiver, for $277

After I submit this form, on which I choose whether I want them to bill Medicare, not to bill Medicare or not to order supplies, I can then call and place my order.  Remember, today’s call lasted 62 minutes.

I was reminded that I would be fully responsible for $745.14 if I do not qualify under the Medicare criteria, which have not yet been published! 

In other words, I will place an […]

Savvy in Hollywood: I Was the T1 CoHost on the Bonnie Sher Show AGAIN!

Oh, what fun!  I was invited back onto the Bonnie Sher Show today to speak about LOOPing … running a closed loop hybrid insulin delivery system, using RileyLink.  I had about 20 minutes to explain about the closed loop system and my experiences over the past 6 weeks.  It was exciting and a blast!  In addition, the first 1/2 hour on the show featured Dr. Andrew Drexler, a super endocrinologist in Los Angeles whose been taking care of T1’s for over 40 years … wow, is he ever knowledgeable!

Here you go … or as they say in show business, Take It Away!!!

 

Savvy D Goes BACK to HOLLYWOOD!!!

Bonnie Sher Show, here I come, AGAIN!

I’ll be Bonnie’s T1 CoHost on her program on UBN radio/tv this Thursday, 2/23/17, to talk about my experiences with the hybrid RileyLink closed loop insulin delivery system that I’ve been trying for the past 3 weeks.  It’s been QUITE a learning experience … and I’m so excited about it that I just ordered a back-up system!

 

 

 

Details: 

Thursday, 2/23/2017

UBNRadio.com, Channel 2

#BSherRadio

OR CALL IN and SAY HELLO:  323.843.2826

Savvy LOOPing: Wes AGAIN on Closed Loop Proof of Concept

Wes is one of the greats of Nightscout and #WeAreNotWaiting … and he’s an amazing and fully committed guy.  Here’s his take on Closed Loop Proof of Concept:
 

Successful PROOF of Concept! …BUT our family will be taking this transition much much slower than first anticipated. SO between the gauge of #WeAreNotWaiting and #WeAreWaiting, we are at #MovingForwardAndDoingMuchMoreResearch ; )
This is hands down the most POWERFUL diabetes tool at our disposal.
I compare it to a jet airplane. You can learn just enough to know how to take off, but flying (Looping) is about SO much more than taking off. You NEED to learn the system before you take off, you NEED the training to ensure you can successfully maneuver & navigate, and you NEED to know how to safely land.

Because after all, it’s not about getting to your destination, its about arriving safely, intact, alive, (so you can keep flying (Looping) for the rest of your life)…or until they find a cure (heard its only 5 years away ; )

PS-To *any* of the families that may have FOMO (Fear Of Missing Out), rest assured that FOMO should **not** be your reason for setting this up prior to spending the requisite amount of time to learn how to fly (Loop). How long is the requisite amount of time? I have no idea, our family just enrolled to “learn how to fly (Loop).”

 

Savvy LOOPing: Behind the LOOP, thanks to Wes Nordgren

HAVE YOU EVER LOOKED BEHIND A LOOP? Nightscout superstar/superdad/super guy gives you a glimpse! Thank you, Nightscout, Loopers and CGM in the Cloud!

When I looked behind our Loop, I found the following individuals creating, implementing, and supporting our Loop. That is when I realized that their actions would be imprinted upon the hearts in our family for being the catalysts of change in a dreary world fraught with our never ending battle with T1D.

Ben West for seeing what I could not see, for showing me that which I missed and for his perspective and his ability to sacrifice for the good of the many.

Dana M. Lewis & Scott Leibrand for their tireless efforts in bringing the closed loop technology to the masses through OpenAPS.org, Gitter, conferences, and their ever-present work on harnessing the genie that has come out of the bottle.

Nate Racklyeft & Chris Hannemann for their quiet, thorough & amazing work in the Open Source community and with OpenAPS & Loop.

Chris Hannemann, Mark Wilson & Nate Racklyeft for their amazing ability to communicate the necessity, reality & simplicity of Open Source closed loop systems as solutions.

Jason Calabrese for being a dear family friend & trailblazer for our family through the myriads of options in the OpenAPS community, (he’s the Indiana Jones of closed looping).

Edward Raskin for shattering my paradigm in Anaheim & offering perpetual support (my world would *never* be the same).

Jason Adams for his **eternal** optimism regarding closing the Loop and everything we can do with it for our community & families.

Kate Farnsworth for hitting the ground running and having plans in place with Pina Barbieri before the conference in Anaheim even ended. For creating a Loop group and community that provides […]

By |February 13th, 2017|LOOPing|0 Comments

Savvy LOOPing: #Loop vs. #OpenAPS

No, I have not gone to the dark side … and this article is wildly techie.  But since we’re talking closed loop systems (yes, the hot topic in 2017, a great conversation starter!), this article is written by one of the really knowledgeable hackers/techies, looking at both systems. 

Thanks to Tim Street, a group member on FB Looped for the definitive piece on do-it-yourself loop systems, published 12/19/2016 on www.diabettech.com. 

Having run and used Loop and OpenAPS side by side for the past three or so months, I felt it was time to compare what it feels like to live with them, and some of the things that you need to do, regardless of which option you elect to go with. I come out on the side of preferring OpenAPS, but using Loop when needing portability. You may have a different point of view.

 
It’s the numbers, silly…
The first thing that anyone dabbling in looping needs to consider is that you need to know your numbers. That means plenty of testing. And when I say testing, that’s basal testing, Insulin duration testing, I:C ratio testing and ISF testing. That means doing I:C and ISF at different times of day to confirm that you don’t get changes and therefore need to have them added differently.
Why’s this important? Well both Loop and OpenAPS work out your insulin adjustments using this data, and if it’s wrong, then both struggle to keep you in target and deliver a good result.
#Loop and #OpenAPS – living with both, the similarities and differences – let’s get down and dirty…

And if you want to “chat” with Tim, you can join the Looped group on Facebook.

By |February 11th, 2017|LOOPing|2 Comments