NPR: Father Devises A 'Bionic Pancreas' To Help Son With Diabetes

So many times I tell people, "You'd have to live with us for a few days to really understand type I diabetes". 

NPR posted a wonderful audio interview with Ed Damiano, the man who is working on the 'Bionic Pancreas' at Boston University. I've embedded Rob Stein's report here for you to listen to... after you're finished I encourage you to head over to NPR's site to read the entire interview.

Full story on NPR

Image by Ellen Webber for NPR

DexCom’s Forthcoming Mobile App Platform to Integrate Data from Insulet’s OmniPod System

Well, well... This sounds like a positive step!

From Market Watch...

SAN DIEGO, Jun 13, 2014 (BUSINESS WIRE) -- Insulet Corporation and DexCom, Inc. announced today their intention to enable DexCom’s mobile App platform, which is currently under development, to integrate data from Insulet’s OmniPod System. This will be the first version of a mobile App that is capable of incorporating glucose and other diabetes-related data from patients’ devices and displaying the integrated data via a smartphone App. This event also marks the start of DexCom's open architecture approach to diabetes-related data which will include an “approved by DexCom” indication to validate the authenticity of devices and Apps integrating DexCom CGM data.

“Providing OmniPod users and their healthcare providers with easier access to their management data is another key step in making diabetes a smaller part of life,” said Duane DeSisto, President and Chief Executive Officer of Insulet. “Through DexCom’s mobile App platform, OmniPod users will have greater access to the data that is so essential for understanding and improving diabetes management. We are proud to help people with diabetes gain greater and easier control over their disease and we remain dedicated to providing advancements that further this mission.”

“More than ever, we believe that effective diabetes management depends on timely and accurate data. That is why we are excited to complete development of the App and integrate data from Insulet’s OmniPod system,” said Terry Gregg, DexCom’s CEO.

Read the entire announcement here.

Kris Freeman: The Arden's Day Interview

The road to my interview with Kris Freeman starts when he posts this picture on Twitter as the Sochi Olympics are beginning. The photo of Kris and his fellow US cross country teammate Kikkan Randall (say Key-Can) caused me to have two distinct thoughts, “I am significantly out of shape” and  “This reminds me of a point in my life when I was afraid that my daughter Arden was too lean to wear an insulin pump or continuous glucose monitor (CGM). 

I immediately reached out to Kris and inquired about using his image in a blog post that I wanted to write called “Worried Your Child Is Too Lean For An Insulin Pump Or Cgm?”. Kris, very generously agreed and then I asked him if he would be willing to do an interview with me after he arrived home from Sochi.

My interview with four time Olympic athlete and type I diabetic, Kris Freeman

Scott: When you posted the photo was this just you celebrating the games starting with a friend or did you have an idea that it would help people who wear insulin pumps and CGMs?

Kris: We were just playing around… we were both just taking off our wet shirts from training and I was like, “Hey this might be cool, lets take a picture”. 

I told Kris how I wanted to use his photo to help lend Arden’s Day readers the same support that I was offered many years ago on Twitter. It was then that a woman in her thirties reached out and told me that she was lean (like Arden) and had no trouble finding good sites for her pump. That brief conversation took away my apprehension about Arden starting on an insulin pump and I wanted to return the favor . "My blog posts are fine" I thought, but this picture of Kris is certainly more inviting, informative and poignant then any words I could throw together. It really makes the point that a person can find a pump or CGM site no matter their body type.

S: The blog post that included the picture of you with Kikkan is one of the most popular posts that has ever appeared on my blog. Seeing an insulin pump and CGM working on such a lean person was inspiring for so many people who live with type I diabetes and their parents.

S: What is your average body fat when you are in competition shape?

K: I go off of a body fat monitoring scale and I range anywhere from 4 to 8 percent. The scale has some inaccuracy in it depending on your hydration level, but I harbor around 5 to 6 percent normally. 

I asked Kris if he knew the average body fat for an adult, he wasn’t positive but he guessed it may be around twenty… I looked down as he was speaking and thought, “What must mine be...?”.

S: How many hours a week do you train to maintain that level of fitness. 

Kris gave a complete answer about varying his effort, “Each month I’ll have two hard weeks and two easier weeks, so that my body doesn’t get used to a certain load”. “I also change the amount of volume from month to month”. He says that he trains the hardest in August and September and then through October, November, December the volume comes down but that during those months, “I train harder, I ski faster, do intervals… training my anaerobic system instead of my aerobic system”. “If you want to just know how man hours a week I average, last year I trained about nine hundred hours for the year. That includes one off day a week and illnesses that don’t allow me to train”.

I did some quick math and it sounds to me like Kris trains on average of twenty to twenty-two hours per week, or the equivalent of the amount of exercise that I did between 2008 and 2010.

K: My biggest training days are five to six hours and the smallest is one to two.

S: Since there isn’t always snow available, how do you train for cross-country year round?

Kris training on Roller Skis. Image courtesy Krisfreeman.net

K: I do a lot of dry land training, I use roller skis. They look kind of like roller blades but they attach with the same boot and binding as my skis. They are remarkably good at mimicking the muscle use of skis, it’s just a different feeling to be rolling instead of gliding.

S: When we were watching you ski at the Sochi games it occurred to me that your life is kind of like a living diabetes blog. That the simple act of you going about your day is an act of support and relief for people who live with diabetes and the people who love them. I’ve received countless letters over the years that thank me for sharing our life with diabetes here on the blog, people often say that it "saves" them. I was wondering, do you see that your presence in the public eye is doing the same for people?

I loved Kris’s answer

K: I have never set out to be a role model or an inspiration in the diabetes world. I was just doing what I love to do and I found solutions with my own diabetes care that allowed me to do it. I was alerted that what I was doing was inspiring other people and so over time I’ve embraced the image of a role model but it was never something that I thought of (about) myself.

I tried a few more times to give Kris credit for the example that he provides for the diabetes community but he remained very humble. I could tell how incredibly pleased he was that his life as an Olympic athlete is uplifting to the community, he insisted that he is glad he can inspire people but, “I’m still just me and I’m trying to be the best ski racer and person that I can be, I don’t get out the door everyday and think I’m going to be an inspiration.”

I told Kris that when we watched him compete at Sochi I was struck by the amount of effort and training that cross country requires and thought that it must seem, to most people who have diabetes, to be something that is out of reach for them. I wondered aloud if people with diabetes identify with the image of him working so hard to reach a difficult result. 

S: Your life is a figurative example of diabetes. There is no end to the amount of effort that you have to put in, your footing is never secure and it almost always feels like you are slogging up an incline. I guess you can paint parallels between almost anything, but this one seems pretty obvious. It’s possible that when people are watching you ski, they see themselves in your effort. I hear it in your voice and I’ve spoken with you before… I know you're not trying to be a role model, and I’m not a big believer in role models. I don’t think that anyone should be looking to other people and expecting them to live their life in a certain way, but when it happens organically, it’s beautiful. You're living a blog… and it’s helping people.

We spoke about the interview that he did with The Olympic Zone on NBC and I remarked at how popular it was in the diabetes community.

S: The NBC interview was shared online, liked and commented on furiously. In my opinion it helped people to understand that their diabetes can’t hold them back and it takes away some of the fear that parents of children with type I may have. Seeing you on that stage doing this incredibly difficult thing, it lets parents know that their kids lives can still be all that they hoped for when they first held them as newborns. How does it feel to hear that and to have the support of so many people who identify with you?

K: For sure, knowing that people are watching and are encouraged by what I am doing is inspirational to me. Similar to the advocacy work I do with Lilly visiting summer camps*. I know that I’m having a strong impact on other people… even though it’s hard for me to believe. I know in the back of my head. 

S: Does competing at such a high level change your definite of success? I know you weren’t happy with your results at the games.

Kris at ADA Camp Triangle D in Ingleside, Illinois. Image courtesy of Lilly Diabetes

K: I’ve been fourth at the world before at the World Championships, which is the same level of competition as the Olympics, so finishing in the fifties was not impressive (to me). I was not on my A game at the Olympics, I wish that I could show what a diabetic can do, but at the same time... maybe that doesn’t matter to the (diabetes) community. Maybe it just matters that I was there and that I’m a competitive athlete. 

S: The difference between first place and last was only a few minutes, I guess in your world thats an eternity but I was like, “Sh*t I’d give them all a medal”. Is that kind of a finish motivation to keep going?

K: I’ve been closer in my career and I know what I’m capable of when I’m at my best and I was just not there. That happens. I missed something in training, my coaches and I still don’t know (what) but usually it becomes apparent later. The drive to be the best in the world is the same drive that gets you to the Olympics. You don’t get to the Olympics because you are satisfied with where you are. You get there because you want to be the best in the world and when you get there, you want to be the best (on that stage). 

K: This reminds me of a question that I get at the camps a lot. People ask, “are you the best diabetic athlete in the world?”. I always say I don’t think about that and I don’t really care if I am or I’m not, I’m trying to be the best athlete and skier that I can be. I don’t identify myself first and foremost as diabetic person. It’s part of who I am, I’ve never been ashamed of it. I’m very open with it and I like educating people about the disease, but it is not my primary identifier. 

S: How do you rebound from Sochi, is it more metal or physical. 

Audio answer

S: In regards to the answer that you just gave. I see a strong correlation between it and diabetes. Do you see that as well?

Audio answer

S: Do you have Olympic aspirations for 2018 in South Korea?

K: I’m not going to rule it out but I’d say the likelihood isn’t great. I’m will only continue ski racing as long as I can stay at a very high, international level. Definitely racing next year and if I continue to race to my standards then I will continue the next year, and the next year and that year will be an Olympic year. If I’m tired and my body is not responding to training anymore, as sometimes people don’t when they reach my age, then this next year will be my last year. But I don’t expect it to be. 

S: So your professional skiing goals are to keep skiing and doing your best, and see where that leads you?

K: I have higher goals than that. I’d like a top ten finish at the World Championships next year, I’d like to stand on top of the podium again at U.S. Nationals. I think that those are both attainable goals, they are also high goals. I’m not interested in staying in the sport to watch my skills slowly deteriorate. I want to stay in while I’m still competitive and I’m going to give myself another year to do that.

S: What do you want to do after skiing ends?

K: I plan on venting my competitiveness by going into semi-pro triathlon, the very next year.

S: Aside from the competitive nature of the sport, what do you love about skiing?

K: One of the coolest things about cross country skiing is that you never have to stop, you don’t get to the bottom of a run and have to get on a lift. Every time I do it I get a little better at it, a little more efficient. To just know that I can go out and ski fifty miles without being exhausted, just kind of gliding… it is really cool. I’ve been exposed to and competed in all kinds of skiing, but cross country is what brings me back.

S: I wanted to finish by sharing something with you. The day after your NBC interview Arden went to school and talked about you during her share time. She told her class that she knew a man that was in the Olympics and that he skis on “those really difficult courses”. His name is Kris and he has diabetes just like me, he even wears the same insulin pump and CGM as me. 

I explained to Kris that the kids are all aware of Arden’s type I and about how we manage her BGs during the day without her ever leaving class. 

Because of our level of transparency, the other children and teachers are very aware of Arden’s diabetes. Even though they see it up close, there are still many who believe that it will limit her. I told Kris that Arden was able to stand in front of her class and tell everyone (in essence) that this person who is competing at the Olympics, this guy who looks like a superhero - he’s me. I don’t have limits.

S: I’m pretty sure that if Arden did that the next day, well, I bet a lot of kids did the same and I’m certain that people with diabetes everywhere also felt that same message of hope and fearlessness from watching you. 

K: I hope that’s true, I think that so many of the limits that are placed on diabetics are based more on ignorance or outdated ideas of what the disease means. I like to say that there are no limits to diabetes as long as you take responsibility and treat it.

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links

Kris Freeman's website

Kris is on Twitter @TeamFreebirdXC

Lilly Camp Care Package - * Camps run by the ADA and the Diabetes Education and Camping Association. Lilly supports the camps by donating supplies.

U.S. Ski Team

Check out Scott's book, Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad

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Forgotten Wallet Buys a BG of 25

Perhaps you saw the picture that I posted yesterday of Arden making a play during her weekend long softball tournament? It was accompanied by a caption that read, "Tournament champions! Five games in two days, not one low BG. OmniPod & DexCom perfect together. #diabetes #softball #undefeated".

Tournament champions! Five games in two days, not one low BG. OmniPod & DexCom... perfect together.#diabetes #softball #undefeated

I probably could have written a blog post about the experience but I was still plenty exhausted from the weekend - so I went with a simple photo to not only celebrate, but to let you all know that it can be done. Long hot days, travel, little sleep and a lot of exertion can be managed with a few diabetes tools and a little extra focus. 

Do you know what a CGM and insulin pump can't help you with? They are not designed to remind a person that they put their wallet into the glove compartment of their wife's car - if they did, yesterday would have gone much better.

This is the story of a blood glucose reading of 25, that happened in a restaurant - it was an old school low, no working CGM and enough rookie mistakes to fill sharps container. Ready?

As previously mentioned, Arden had a softball tournament that lasted all weekend and required us to stay in a hotel on both Friday and Saturday night. In the fine tradition of baseball/softball lunacy, we scampered from the field Sunday afternoon moments after Arden received her championship trophy, to make the ninety minute drive home... so our son Cole could pitch in a 4:30 pm game (Five innings, no runs btw). Anyway, during that drive I put my wallet into the glove compartment of my wife's car and never removed it. This was no big deal, until I found myself in the parking lot of a restaurant the next day - with no money.

I guess that I felt pretty silly having driven ten minutes to the restaurant with my kids and one of Arden's friends in the car only to find that I didn't have any money. I couldn't believe that I forgot my wallet. Then I recalled that it wasn't just abandoned at home, but was in Kelly's car. I thought for a second, asked my son if he had some cash that I could borrow and we drove home to get it from his room.

Ten minutes to the restaurant, a few minutes sitting in the parking lot figuring out what to do, ten minutes home, a few minutes to gather the cash and ten minutes back - then we got our seats, read the menu and ordered.

Lots of confusion, lots of running around - lots of opportunity to forget that I pre-bolused Arden for the meal, when we initially left to go out to eat, you know - almost an hour ago!

My brain snapped back into diabetes mode when Arden said, "Dad, I feel dizzy". I asked her to test. It took a few moments then suddenly the math came to me, Ten minutes + five + ten + five + ten + ten x I bloused for a meal / the CGM is still calibrating = JUST DRINK A JUICE!

I stayed calm not only because we were in a restaurant but because one of Arden's friends and teammates was sitting in the booth right next to her. I prioritized; stop seizure, try not to panic, juice, test, stay focused. Arden's BG was 50 when we tested but I could tell, even without her CGM that she was dropping fast. Not because I knew how long it had been since we bloused, not because a could see it in her face - I could tell because of what she said when I asked her to keep drinking.

Arden took a few sips and then put her head on the table. In my opinion, one of the most frightening and nauseating side-effects of low blood sugar is the inability to care about your own life. "Arden keep drinking, I really need you to keep drinking". She didn't move, I knew she heard me but she could make herself care. Arden understands what will happen if she doesn't drink the juice and she couldn't, because her blood didn't contain enough glucose, make herself care about her own life. 

I instructed my son to stand up and then I picked up Arden and moved her to my side of the booth. "Cole, go get apple juice from the waitress, walk right up to her - be fast". I got Arden to finish the juice that we carried and tested again, her BG was now twenty-five. With no CGM arrows to rely on, I just wanted her to keep drinking. Cole returned with the apple juice (Arden doesn't like apple juice) and I had to beg her to drink it - I whispered in her ear, "Arden, please drink this, I think you're about to have a seizure", she responded without hesitation, "I don't care".

Before I knew about diabetes, if you would have told me that a reduction in the amount of sugar in a person's blood would make them cease to care about preserving their own life, I would not have believed you. Continuing to exist is perhaps our most basic and natural instinct, it has kept humans alive and thriving for untold millennia and yet, too much insulin can make you lay down and die without a fight - even when the fight is something as simple as drinking a juice.

I kept talking until she would drink, soon the waitress brought bread and other foods, Arden began to eat and a few minutes later her BG was above fifty. She took a few more minutes to pull herself together and then asked to go back to her original seat, with her friend. 

My heart wanted to race but I stopped it from doing so, my eyes wanted to cry but I did not let them. I couldn't breath and I couldn't stop thinking about all of the avenues that I should be considering. Where is more sugar if I need it, when do I let others know how close we are to a real medical emergency, "don't you dare panic", and how the hell did you leave your wallet in Kelly's car? A swirl of thoughts and emotions but they were no longer needed, it was over as fast as it had begun. Now all I had to do was try to put my thoughts all back where they belong. Then the waitress put Arden's meal in front of her and I had to, and this almost seems unthinkable, had to count the carbs that I used to stop the low because I was going to have to bolus again for the meal. Only brave blousing can stop a rebound high. Time to be brave.

I must have looked terrible by this time because my son asked me if I was alright. I only responded, "It sucks being an adult sometimes" - and then we ate lunch.

From Friday night until Monday at noon, I made hundreds of decisions about Arden's diabetes. Some how I was able to manage her through five softball games, swimming, at times - less than healthy food choices, exposure to the hot sun and then I left my wallet in my wife's car -  a simple mistake made on Sunday night that took us up to the brink of Arden having a seizure on Monday afternoon. Had Arden not felt dizzy, I don't know what would have happened. 

UPDATE: I probably should have included in the original writing that Arden's BG, at the time of the pre-bolus, was 230. It was a restaurant that we frequent, knew what she was going to order and how many carbs it contained.

Arden's Day of Diabetes: #DayofDiabetes

Around a year ago the JDRF did this cool thing where people could sign up for text alerts that were meant to simulate having diabetes - so people could understand better the relentless nature of living with type I. I loved that idea, but how could I not? That's exactly how I started Arden's Day. 

Six months ago some wonderful folks did it again on Twitter using the hashtag, #DayofDiabetes and I loved the idea even more (Twitter is perfect for this) and participated in the event. Those same people brought up doing it again today - I'm in.

I'll be tweeting, Facebooking and refreshing this blog post all day whenever diabetes requires interaction. I wonder what kind of day with diabetes this Day of Diabetes will be?

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Midnight: My day with diabetes began around midnight when a late evening bolus just would stop. Managed temp basal rates to get Arden's BG to 110.

4 AM: Up again to set more decreased temp basals. Finally gave up around 5 AM and gave Arden some juice (1/4 of a box) . Ended up staying awake because the juice wasn't working. Of course, the juice I added at 6 AM ended up being too much - figures.

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7 AM: Up for school and now blousing to stop the BG rise from the second juice sips. CGM now 160, arrow straight up. Juice sips worked too well!

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7:50 AM: Replaced juice box in Arden's bag (Used it last night for a low during softball pitching practice), set a timer for 45 minutes on her phone. Going to try and eliminate high BG (190 CGM) before school snack at 9:30 am.

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8:28 AM: Blogged about diabetes

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9:07 AM: Just texted with Arden, need her to test her BG. She told me to "wait five minutes" apparently they are in the middle of a contest. #DayofDiabetes

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9:30 AM: Arden and I texted for her school snack. BG was 190, stubborn this morning. We boluses for 30 carbs. I asked her to test, she wanted to bolus from CGM. She said, "Fine I will but if they match I will poop on you" - I hope she meant the emoticon. They matched BTW.

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11:00 AM: Lunch time text.

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1:48 PM: Post Gym #CGMnow is 97. Temp basal off for 30 min and a few carbs should hold it there. We’ll see. #DayofDiabetes

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2:30 PM: Arden will be home soon. Time to pack a bag with supplies so we can go watch her brother play baseball for the school team. I don't remember what it feels like to run out the door with just my wallet and keys. #DayofDiabetes 

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3:16 PM: So the one day I try to outsmart an after school drop in BG... diabetes does the opposite. 185 and creeping up. Damn

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5:07 PM: Some mini muffins will stop the bg fall. Only bolusing for half. #DayOfDiabetes

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6:30 PM: Made a wild guess about dinner carbs on the way to a restaurant. Needed the pre-bolus time to work on a slightly elevated BG. I won't know hoe well I guessed for about 90 minutes.

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