#WeAreNotWaiting

This post is going to be about Sriram getting started with Loop, the open source Artificial Pancreas System(APS).  This might be a longer post as I want to touch upon a range of topics here.

We were introduced to the concept of insulin pump on the day of Sriram's diagnosis.  We heard more about it in the following weeks.  Initially, every meal ended being a struggle as Sriram hates shots.  Well, who likes shots anyway.  He was ready to skip meals as he didn't want the shot.  He was willing to do as many bike rides as possible in our neighborhood in order to bring down the blood sugar.

During our second month visit Sriram's endocrinologist suggested that we should get an insulin pump  as he wasn't putting on any weight.  She suggested we should attend the insulin pumps class at Stanford in order to learn more about pumping and about the various options we have.

In the meantime, I saw an Omnipod add on Facebook.  Omnipod is a tubeless insulin pump and it seems to be pretty easy to use.  I was pretty impressed with it right away.  The biggest concern Sriram had about insulin pumps is the tubing.  There were number of pumps in the display in the Insulin pumps class.  Omnipod was the only tubeless insulin pump.  It took me almost a month to convince Sriram to do a saline trial.  He finally decided to go with the Omnipod as his insulin needs has increased quite a bit by that time and he had to get shots for every meal.  After some insurance hurdles, we were able to get him started on the pump in the last week of May 2017.

Initially, we didn't know the potential of an insulin pump and the process to manage the blood sugars.  Sriram's a1c in the next appointment was 8.1.  We started listening to the juice box podcast (www.juiceboxpodcast.com ) around this time.  I heard for the first time ever that its ok to give corrections after food in case of a rise in BG.  We realized that being bold with insulin was key to having good blood sugars.  We started to use the temp basal option quite a bit to regulate the blood glucose levels.  I found the sugar surfing mamas group on Facebook.  I learnt quite a bit about the ways to manage blood sugars from the sugar surfing mamas  group.  Sriram's a1c started to go down.  It was 6.1 in our last appointment.  But, it came with a lot of hard work.

 Some consider a1c as a lifestyle choice.  We realized it takes a considerable amount of time and energy to maintain a good level of a1c when we attempted to go through the route of sugar surfing or being bold with insulin.  We saw the benefits of the effort in terms of Sriram's a1c though.  Sugar surfing worked well for us not only because Sriram was cooperating with this model for most part, but also because of the fact that my work allows me to follow Sriram's blood glucose closely.  There are folks out there who does this lot better with much lesser stress than we do.  But, the way we manage didn't seem to be sustainable in the long run.  Therefore, moving to a hybrid closed loop system or an artificial pancreas system seemed to be inevitable.

 Insulet's version of Omnipod's hybrid closed loop system is still in the design phase.  It might not be in the market at least until 2020.  A whole host of other pump manufacturers are working on building a closed loop insulin pump.    Most of those pumps are expected to be in the market in the next couple of years.   Medtronics' 670G is only one available in the market today.  I have heard mixed reviews on it.  Medtronic's sensor technology is nowhere near Dexcom though.  Insurance is the other hurdle in switching pumps at this point as we are not eligible for another pump at least until 2021.

I have heard a bunch of interviews on Open APS in the juicebox podcast.  A closed loop insulin pump can be built by using an old Medtronic pump, Dexcom sensor, raspberry pie or another equivalent hardware using the code provided by the openAPS team.  This system was designed and developed for automating the insulin delivery based on the CGM readings.  The system adjusts the insulin delivery almost in real time.  Open APS was originally developed by Scott Liebrand and Dana Lewis. 

Nightscout is the front end web interface that provides a whole lot of data from the insulin pump and the CGM.  Night scout is the front end for OpenAPS & Loop also.  Loop is the offshoot of the openAPS technology.  Loop has a neat smart phone application with which we can give insulin, enter carb counts, log activities etc.  Senthil has configured the Night scout web interface for Sriram already.  But, we used it only for few months as Dexcom's share interface was lot more easier to access. 


The challenge now is that both Open APS and Loop would work only old model Medtronics pumps.  But, this means Sriram has to switch to a tubed pump.  Sriram was still nervous about using a tubed pump.  We met a bunch of parents in the CarbDM's diabuddies meet up few months ago.  CarbDM is the local support group for parents of kids with T1D.  We decided to regroup again to discuss about setting up of Loop.  Sriram and Senthil attended the first meet up session.  I joined them for the second session.  We met couple of Open APS users including an almost 70 year old lady on Loop in that meeting.


One thing that has to be noted here is this is an open source initiative and it is not a FDA approved method of insulin delivery.  The whole idea of a Do it yourself system sounded so far fetched to me when I heard it for the first in a CarbDM conference back in the March of 2017.  But, not anymore.  I wasn't hesitant about it because I can put a face to this technology now.  At the end of the second session, the host Jessica gave us a box of Medtronics infusion set for Sriram to try out.  I inserted one on myself first.  Sriram tried one the next day.  The pain of insertion of the medtronic set was same as a flu shot and nowhere close to the Omnipod insertion.  Sriram agreed to move to the Loop system hesitantly.

In the meantime, Senthil and I attended Carb DM's beer and basals meet up.  We met a couple of folks who are on the loop system.  It was very encouraging to see and hear their experiences.  I realized our quality of life will definitely go up if we move to this system.  I started searching for a pump on Facebook.    Luckily I found a pump right before the week of July 4th.  The person who sold the pump has sent us a bunch of supplies.  Apart from the pump, we need a piece of hardware called Riley Link(RL) to set up the loop system.  The RLs were back ordered with no ETA.  Becky, one of our local T1D moms also gave us a bunch of Medtronics supplies and her spare Riley link.  In short, we were all stocked up to set up Loop right before the week of July 4th!  We did face some technical hurdles while setting up the system.  But, we got all the issues resolved with the help of the folks in the Looped Facebook group.

Its over a month since we started using this system.  We are still learning to use it.  We are not seeing those straight lines on the Dexcom yet.  The key here though is the level of automation of insulin delivery. The number of insulin delivery decisions we make has gone down tremendously and as a result I feel that we have regained a lot of time back.  Hopefully with in a month or two we would be able to make full use of this system.

 We came back from our Yellowstone vacation yesterday.  Sriram's blood sugar was lot better in this trip compared to our previous ones.  There were days when his blood sugar was in control for more than twenty hours.  This was without much effort from our end.  Its amazing to see the number of insulin adjustments Loop made during this period of time.  Sriram's mood was lot better that day.  I felt as though he was a whole different person and was happy to see him enjoy himself.  This is the screenshot from one of our days in the Yellowstone trip.

I still cant comprehend the fact that at this day and age so many people would be willing to give away their time and a valuable piece of technology for no cost.  So, to recap, some of the folks who have contributed to this system are, John Costik, the original developer of the Night scout application, Scott Liebrand & Dana Lewis, the inventors of Open APS, Ben West, the person who hacked the Medtronics pump, Peter Schwab, the inventor of the Riley Link used for setting up Loop, Katie Disimone, one of the key contributors of the loopdocs site and of course the countless developers who contribute to this open source system. Its needless to mention the role of our local T1D contacts in helping us to get to where are today. T1D has touched most if not all of the folks listed here in one way or the other.   It looks like T1D has surely ended up messing with a wrong(right) set of folks.  The folks who are ready to help others live a better lives.

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