OpenAPS Part 6

My first interaction between my endocrinologist and my OpenAPS was… interesting.

I have never been excited to walk into my endocrinologist’s office. In most of the 20 years that I’ve had T1D, I have been so fortunate to have some of the most involved care teams. I owe them a lot, but that doesn’t mean that I enjoy our appointments. I’ve known that my HbA1c is going to be high, and I’ve also known why. Recently, I was speaking with a psychologist who specializes in T1D research and mentioned that I have a script for each of my endo appointments to get them off my back. It goes something like this, “I need to test more often, I need to upload my data more often, I need to bolus 20 minutes before eating, and I need to eat lower carb meals.” If I really want to hit it out of the park then I’ll say something along the lines of, “I know that making all of these changes help, but the only way that I’m going to get to where I want to be is if I make some lifestyle changes too. If I get a solid routine where I eat the same things, sleep regularly, and exercise in ways that work best for stabilizing my blood sugars, I know I can do it.” Then I’d leave the office, do all of those things for 2 days, and revert back to my very normal/out of control lifestyle.

It is safe to say that this appointment with my OpenAPS was going to be very different. I walked into my endocrinologist’s office excited because my management has never been better, and even more importantly, I wasn’t burnt out. I was ready to hear them say, “Oh yeah, I saw one of those at a conference, I hear a lot of parents are using it in conjunction with Nightscout on their kids.” It was naive of me, but I had high hopes. I let the predicted HbA1c % from Carelink get to my head.

As per usual, I was escorted to my nurse’s office where we looked at the data I had uploaded and I cannot even begin to describe the look of horror on her face. I had more lows than usual, around 10% per day, and my basals were everywhere (because the OpenAPS does that). She almost immediately ran out to grab my endo so that they could hear the whole story together. My hope and excitement turned to fear and dread. They came back into the room and I told them about OpenAPS. About halfway through my explanation, my endo stopped me and expressed his concerns. He said that he would do anything to get me off of it, then offered me a pancreas transplant, islet cell transplantation, and a variety of other treatment options. He went on to say that whatever my HbA1C was, it wasn’t interpretable data. The nurse said that I was in danger of ending up, “dead in the bed,” a saying that I despise with my entire heart. I burst into tears. Quite honestly, my management has never been better in my entire life and I was being told that it was putting my health in jeopardy. A classic, “you can’t win,” situation. I stayed strong, however, and we decided to book another appointment in 2 weeks.

The next day, my endo called me and said not to worry, he contacted his colleagues and that everything was fine.

The day after that I changed my target ranges so I was being less aggressive and going low less often.

Everything from this point onwards was fairly uneventful, I went for another appointment with my endo and he said that I have patient autonomy and that the clinic will support me as long as I have the knowledge that this is not an approved system and it has not undergone the same rigorous testing as other systems (for example an insulin pump) that are approved. He also commented that it is hard to ignore the significant improvement in my HbA1C. I showed him my new data since I changed my targets and my lows were less than 5% most days which made him happy.

So now here we are, the OpenAPS and I have survived another battle and are still going strong. I have no regrets about pursuing this system, and I hope that the word spreads about it as to turn up the heat on developing and approving more aggressive closed loop systems than the 670G. I don’t feel any animosity towards my healthcare team for this experience, I recognize that a young patient showing up with a rig that they built out of products from Amazon is pretty scary. Breaking down the walls of traditional diabetes management was and is not going to be easy. At the end of the day, we all have the same goal of maintaining optimal health.

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