Skip to content

Posts from the ‘Diabetes Community’ Category

A Human’s Resilient, One Hundred Percent!

Sighed Panky, a lazy panc deep in the gut
“I’m tired and I’m bored
And I’m stuck in a rut
From making, just making insulin every day.
It’s work! How I hate it!
I’d much rather play!
I’d take a vacation, or a long nap
If I could find someone to do all this crap!

If I could find someone, I’d kick back and chill …”

Then Panky thought, “Could Kerri be up for the thrill?”

“Hello!” called the lazy panc, smiling her best,
“You’ve nothing to do.  Does this sound too strange …
Would you like do the work I do for a change?”

Kerri laughed.
“Why of all silly things?
I haven’t islets or enzymes or things.
ME do your job?  Why that doesn’t make sense!
Your job is make insulin!  The thought makes me tense.”

“Tut, tut,” answered Panky.  “I know you’re not me
But I know you can do this.  Won’t you hear my plea?
Just pick up that needle and draw up the dose.
Once insulin’s flowing you won’t feel morose.”

“I can’t,” said the Kerri.
“PL-E-ASE!!” begged her panc.
“It won’t be too hard, kid.  Sorry to pull rank.
But I’m leaving regardless if you raise your voice.”

“You’re a jerkface,” said Kerri.  “Not to give me a choice.

I’m unsure how to do this. Details are the devils!
How do I keep steady my blood sugar levels?
What do I do? Can you leave me instructed?”

“You’ll figure it out,” and the panc self-destructed.

“The first thing to do,” murmured Kerri,
“Let’s see.
The first thing to do is to prop up this Me
And to make ME much stronger.  This has to be done
Because diabetes can weigh an emotional ton.”

So carefully,
Hopefully,
She searched, unimpeded
For the resources, tools, and support that she needed.

“I know that there’s life found after diagnosis.
It’s good and it’s worth it. That’s the prognosis.
I meant what I said
And I said what I meant …
A human’s resilient,
One hundred percent!”

Then Kerri, with peers and insulin by her side,
Well she tried
and she tried
and she tried
and she tried.

She kept at it for decades
Despite feeling perplexed.
It requires work one day,
Again on the next.
It sucks! Then it doesn’t!
But Kerri remained sure,
“My life’s worth this effort,
(Though I’d still love a cure.)
I wish Panky’d come back
‘Cause some days I’m so burnt.
I hope that my body thrives on the things that I’ve learnt.”

But Panky, by this time, was far beyond near,
And was dormant for good now. Diabetes was here
And was staying, so Kerri, for better or worse,
Had a pump on her hip, glucose tabs in her purse.

Diabetes is constant, day after day.
But the life in its wake is still good, plenty yay.
And even on days when the Stuff is Way Blah,
Life with disease is not life without Awe.
“It’s not always easy. Diabetes might test me.
“But I’ll stay on task and I won’t let it best me.
I meant what I said
And I said what I meant …
A human’s resilient
One hundred percent!”

Some days it is simple. Some months are real hard.
Diabetes is something you can’t disregard.
But a panc on vacation doesn’t mean that you’re broken.
“You can still do this.”

Truer words never spoken.

 

[With apologies and thanks to Dr. Seuss,  this is in homage to Horton Hatches the Egg.]

 

Go Bionic: Ed Damiano, Clara Barton Camp, and How the Bionic Pancreas “Really Works.”

During my visit to Clara Barton Camp yesterday, I heard the same sentiment over and over again from the kids wearing the bionic pancreas:  “It works.”

“It was weird not to touch the buttons when it beeped,” Addy said, an 11 year old camper at Clara Barton Camp who has been living with type 1 diabetes since she was two.  “I’d reach down to look at it or touch it when it beeped but then I’d have to remember not to touch anything.”

“A big change from needing to check every beep and look at the devices all the time, right?  So when did you feel like you were used to wearing it?”  I asked her.

“Yesterday.  Yesterday, it beeped and I didn’t reach down.  I just said, ‘Whatever.’”

“You trusted it?”

“Yes.  I trusted it.  It works.  If you check it, it’s perfect.  My blood sugars are perfect.”

Addy has been wearing the bionic pancreas since Sunday, part of  the Bionic Pancreas study taking place at The Barton Center (and also the Joslin Camp) this summer.  She’s one of thirteen campers at Barton taking part in the study, ages ranging from six to 11 years old, six girls suited up with the bionic pancreas last week and seven this week.  “My blood sugars have been perfect – I haven’t been low at all and I haven’t been high, except for one 203 mg/dL.”

If a week without blood sugar excursions sounds like an impossible dream, take heart.  Take pancreas, too, because this technology actually exists and is currently attached to seven girls in Massachusetts.  And not “seven girls stuck in a hospital bed under strict activity guidelines,” but seven girls who are running amuck at camp, swimming, dancing, singing in the dining hall, and burping at picnic tables outside of the cabins.  The bionic pancreas has been highlighted in the New York Times, NPR, chronicled extensively over at diaTribe, and has also been the subject of a frequently-downloaded-and-rabidly-shared New England Journal of Medicine article.

The system has a few moving parts:  two t:slim insulin pumps with the Bluetooth switched on for communicating with the phone (one filled with insulin and one filled with glucagon), a Dexcom CGM, and an iPhone.  An in-depth look at how the technology works together can be found in the NEJM paper, but the basic gist is that the Dexcom monitors blood sugars and sends that data to the iPhone, which is running an algorithm that doses insulin, glucagon, or refrains from dosing anything at all.  Lows can be corrected by glucagon, highs by insulin.  Meals aren’t carb counted, but instead the algorithm “learns” what a big meal, small meal, or snack is based on minimal input from the PWD.

“It’s beautiful,” I said to Ed Damiano, one of the principal investigators on the project, after seeing some of the blood sugar outcomes from previous studies.

“It’s still a little clunky,” he replied.  “I want to see one device, one infusion set.  But this?  It works.”

Currently, the camp study at Barton has girls on the full bionic pancreas system for five days, and then five days on their own insulin pump, but with the CGM blinded to the user and still uploading to the cloud.  Bionic pancreas campers are required to check their blood sugar at least seven times per day.  Due to camp safety protocols, the study team can’t let low blood sugars “ride” and assume that the bionic pancreas will step in with glucagon in time, so success on some levels isn’t judged by minimal time below 70 mg/dL but instead the reliable metric becomes how many times did the study team need to intervene for a low blood sugar.

This summer, there are a few new features on the bionic pancreas.  One is “microburst glucagon,” which is most useful for when people are disconnecting the system for swimming or similar, in efforts to provide a safety net for low blood sugars while doing that kind of activity.  There is also an option for temporary targets, which allows people to adjust their target thresholds.  “Normally, we aim for 100 mg/dL, but if we can adjust the threshold and show a change in the A1C based on that adjustment, we’re able to titrate A1C levels using the bionic pancreas,” said Ed.

Some challenges still exist with the system.  The bulky devices, for one, are their own challenge, but as the project moves forward, the diabetes community rallies to support current needs.  “Donna from Tallygear came up and made these ‘GO BIONIC!” belts in a matter of 48 hours.” Ed said, smiling.  “We didn’t ask her to do that.  She offered, and we are so grateful because the kids love them.”

The kids sing the praises of this device.  Ally, diagnosed in 2009 at the age of five, wore the bionic pancreas the week before Addy suited up. “It really works. When I saw the video online, I thought it was made up. I thought the girl in the video was lucky, and that her numbers were just perfect that day. And then I wore it [the bionic pancreas] and I was like, ‘Wait … it really does work!’”

Addy chimed in, her bionic pancreas belt visible over her shirt:  “Ally wore this last week and now I’m wearing it.  She said to me, ‘If you don’t want to wear it, can I wear it for you?’”

Ally nodded.  “I did say that.”

“Does the weight of the device bug you?”  I asked Ally.

“No.  It’s a little heavier but I don’t care.  Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”

The study at Barton concludes this week and then moves over to the nearby boys’ camp.  But after this study finishes, there is still work to be done.  The amazing bionic pancreas team has come so far and the 2016 pivotal study is in sight, but needs community support to get there.

This is where the Bionic Challenge comes in.

According to the website call-to-action:  “The Bionic Challenge asks each family to raise $5,000 in 60 days (by September 1, 2014). If each family in attendance here today can turn to their friends and relatives and obtain 50 $100 donations (that means finding only about one donation per day for the next seven weeks), we can resume our development effort in September and keep on schedule for our final pivotal study in 2016. If we cannot resume in September, it could jeopardize our ability to secure a recently announced time-limited $20MM NIH funding opportunity, which is due in about nine months (April 15, 2015) and could support all of the clinical costs of our pivotal study.”

tl;dr:  the project needs the support of the diabetes community because, without it, the goal of a 2016 pivotal study may be delayed. If you can donate, please do. If you can’t, please consider sharing this information with someone who can. The more people who know how to help, the better.

After being promised a “cure in five years” back in 1986, the idea of the bionic pancreas being delayed because of money makes me feel insane. I could understand a delay if the technology wasn’t up to snuff, but to delay due to funding is unreasonable.  I saw kids playing outside yesterday afternoon, running around and laughing and having fun and the burden of diabetes seemed only as heavy as the belt around their waist, which with time and technology becomes smaller and lighter.

“I look at diabetes as management and maintenance,” said Ed, as we sat in the Barton Center bionic pancreas command center, where the study team was hard at work monitoring the campers blood sugars from the cloud.  “The maintenance part is the changing of an infusion set, the changing of a sensor, the checking of blood sugars.  The management part, to me, is the emotional part of diabetes.  The fact that you are so often told that you’re ‘wrong’ because you’re trying to thread the needle.  This device doesn’t take away from the maintenance part because it still requires that you wear something, do something, change something.  But it does make the management part smaller.  So much smaller.”

I don’t know if a biological cure will be seen in my lifetime.  I was diagnosed with type 1 diabetes in 1986 and have been living well, but not without frustration, as a host to this disease for almost 28 years.  My perception of what a “cure” is has changed as I’ve grown older, and my hope for something that takes this disease away fades with time.  But seeing the bionic pancreas at work, around the waists of children not much older than my own, and watching the worries of diabetes lifted from their minds and the minds of their families, I feel renewed hope.  More hope than I’ve felt in a long, long time because this is real.  I held it in my hand.  It filled me back up.

Because it works.

You can follow the progress of the bionic pancreas on the Bionic Pancreas website and “like” their Facebook page for more updates.  Links to articles featuring the bionic pancreas are here , and this video shows you how, and why, the bionic pancreas works:

Snapshots: Fell Off.

Until next time.

Miss Idaho: #ShowMeYourPump!

Have you heard?  Sierra Sandison just earned the crown as Miss Idaho, and she accomplished her goal with an insulin pump clipped to her hip.  Yes, that’s right – another Miss America contender has hit the stage with diabetes front-and-center.  And since winning Miss Idaho barely a week ago, Sierra has already brought type 1 diabetes to the national stage via stories on NPR, People Magazine, Buzzfeed and a host of other media outlets.

Diagnosed with type 1 diabetes just after she turned 18, Sierra is helping empower people with diabetes to wear their devices proudly with the #showmeyourpump hashtag as her rallying cry.  Today, Sierra is sharing some some of her diabetes story here on SUM.

Kerri:  Sierra, you were just crowned Miss Idaho and are off to compete for the Miss America crown this September.  Congratulations!  And you’re also living with type 1 diabetes!  Can you share a little bit about your diagnosis story?

Sierra:  My dad is a family practice physician, but I was diagnosed shortly after my 18th birthday and had recently moved out of my parents’ house, so we didn’t catch it as quickly as we could have if my dad had been able to see the symptoms. Fortunately, I was never hospitalized!

I was extremely thirsty and hungry! It finally got to a point where it was ridiculously inconvenient. One day, I was snowboarding, and had to buy water bottles every time I got done with a run. I would drink them on the way up the chairlift, and then have to “relieve” myself at the top, and then again when I got to the bottom. Then, the cycle would repeat. On the chairlift, I called my dad and said, “Dad, I have a problem. I am an aquaholic. Can I go to rehab for a water addiction?” He immediately knew what the real problem was, since my late uncle and grandpa had diabetes, and my second cousin does as well.

However, when it was confirmed, and 550 [mg/dL] popped up on the glucometer, I bawled and bawled and bawled. A diabetes educator came and spoke to my class the next day, because I was terrified that they would make comments along the lines of “it’s your fault”, “maybe if you ate healthier…”, etc.

Kerri:  I saw on your Facebook profile that you were proudly rocking your t:slim insulin pump onstage at Miss Idaho – were you nervous about showing the judges your diabetes device?  What made you decide to go for it and share openly?

Sierra:  I’m going to be completely honest, it still scares me sometimes to wear my insulin pump. Getting the confidence to wear it on stage has been a journey.

When I was first diagnosed, I hated diabetes so much. I just tried to ignore it, and let my blood sugar be high until I felt to sick to deal with it. It was awful. In July, my friend asked me to compete in our local pageant, Miss Magic Valley. I met the director for lunch, who told me everything that was involved. When our food arrived, I pulled out my insulin pen, and she immediately told me about Nicole Johnson, Miss America 1999.

Nicole wore her insulin pump on the Miss America stage while she competed for her title. Knowing that has had such a huge impact on my confidence. As a young woman, we often long to look like the girls in the media: movie stars, super models, cover girls, etc. The media gives us unrealistic expectations, and most of us will never measure up. We soon begin to think that, because we are different from those girls we see, that we are somehow worth less, or less beautiful than them.

What a disgusting lie! Unfortunately, I don’t think we can ever completely escape the influence the media has on us. I hope that someday the media can be filled with a variety of beauty! That is one of the reasons I love the Miss America Organization:  Nicole Johnson rocking her insulin pump in 1999; Alexis Wineman, the first woman with autism to compete at Miss America, in 2012; Heather Whitestone, the first deaf Miss America in 1995; Nicole Kelley, Miss Iowa 2013, was born with one arm.  And countless more women who have inspired the country while competing at Miss America!

So, eventually, after thinking about, researching, and following Nicole Johnson, I got the guts to get a pump. However, it took me another year to compete with it.

This year at Miss Idaho, I was honestly terrified. I was nervous the judges wouldn’t ask me about it in my interview. I was nervous that the audience would be confused. I was scared the other contestants would think I was using it to try and get pity from the judges.

I walked into my interview, and the very first question was about diabetes. It was a huge relief. “I can do this,” I thought, until I walked out of the dressing room, and was immediately asked about the pump.  The person who asked me was Miss Idaho’s Outstanding Preteen, McCall Salinas. While my heart sunk when she first pointed it out, that quickly changed when she explained she was a diabetic, but was too scared to get a pump because of what people would think.

That was it. I was doing it. I was going to wear the pump for McCall, no matter what people said or thought, and no matter how badly it may affect my score. I walked on stage, and the rest is history.

Kerri:  Since the competition, you’ve also encouraged others to wear their devices proudly, with the #showmeyourpump hashtag/mantra.  What’s the response been like?

Sierra:  It has been so overwhelmingly AMAZING! You have to understand, I am a completely normal person. My sisters and I are getting embarrassingly excited about all my new followers and likes. It is so crazy how many people were so inspired by me doing such a simple thing! I was prepared for a lot of negative backlash for competing in a beauty pageant with a swimsuit competition involved, but as far as I know, most everyone has been positive!

The response to my #showmeyourpump campaign has been crazy as well! I can’t keep up—it is unreal! We have had responses from diabetics all over the country, and from all over the world. I have also heard from kids with hearing aids, feeding tubes, etc. How awesome that it is having an impact even beyond the DOC! Keep the pictures coming(:

Kerri:  Is diabetes advocacy part of your competition platform?  Can you tell me about how you plan to use your voice to improve diabetes awareness?

Sierra:  It was my original platform, but before I was Miss Idaho, I didn’t have much of a voice. My platform now is actually a program my sister and I started for kids with developmental disabilities. We put on sports camps for them! The program is called Possibilities for Disabilities. Originally, we just wanted to give them the chance to participate in the fun extracurricular activities their peers do, because we think that sports and music are important to adolescents in finding their identity, discovering their passions, and building confidence. What we soon realized is that the program was doing so much more! We have students at the high school volunteer as “student coaches” and work with the campers. By placing the kids with disabilities in a fun, empowering, positive environment with their peers, it breaks down barriers and helps the kids form friendships with their peers. This has transformed their lives more than anything else! The entire culture of the high school we work with has changed towards the kids in special ed. They have formed identities beyond their disabilities, and are accepted more than they ever would be at another school. I am so excited to have the opportunity to spread Possibilities across the state, and even across the nation, as Miss Idaho!

With my diabetes, the message I try to get across to everyone I come in contact with is this: whatever obstacle they are facing in their life, they can not only overcome it, but use it to become a stronger person, as well as impact the lives of others. There is one girl in my camp who is a high functioning autistic, and has decided to put on a Possibilities camp for her senior project next year. I am so excited. She is doing exactly what I hope I can inspire others to do: take their challenges and use them to serve others.

I love Possibilities for Disabilities, but now that I have a more powerful voice as a diabetic, I am ECSTATIC to use it! Who said I couldn’t have two platforms?

Kerri:  There’s a lot of discussion in the diabetes online community about diabetes stigma.  Have you ever been discriminated against in terms of diabetes?  How did you handle it?

Sierra:  Before my family and close friends were educated, there were some hurtful comments about how my diabetes was my fault, because of the confusion between type 1 and type 2. Aside from that, I cannot recall any other negative experiences, aside from confused and slightly cold questions about my insulin pump. I have been very fortunate!

Kerri:  How can the diabetes community help support you as you make your moves for Miss America?

Sierra:  In a couple weeks, all the Miss America contestants will be publishing their “People’s Choice” videos. America can vote one contestant into the top 15! Only the top 15 get to compete in the televised portion of the pageant. It would mean the world to me if the diabetic community would help me win People’s Choice to guarantee that I have the opportunity to compete with my pump on national television!

Kerri:  Sounds like a plan, Sierra.  Is there anything else you’d like to share?

Sierra:  I am so happy I can have a voice to inspire others who are similar to me, and hope to serve the diabetes community to best of my ability this year! The best way to reach as many diabetics as possible is through the DOC and social media! You can follow my year as Miss Idaho in the following ways:

Twitter: @sierra_anne93, @missidorg
Instagram: missidahoorg, sierra_anne_nicole
Facebook: Miss Idaho Organization

I have also had a lot of people ask me about sending letters and gifts! I adore snail mail, so everyone is welcome to send mail to:  Sierra Sandison, P.O. Box 6159, Twin Falls, ID 83303.  I love you all so, so much! Thank you again for all your support!

Thanks, Sierra!  You can follow more from Sierra on her personal blog, Miss Idaho, and via the #showmeyourpump hashtag.  We’ll be following your journey to Miss America this fall, and supporting you along the way!

Tallygear Winners!

The Tallygear giveaway was fun to run because it helped contribute to a discussion about how people in the diabetes online community are tackling diabetes-related stigma.  The comments section had some great points about erasing diabetes stigma, and I wanted to highlight a few:

“Today I had a good discussion with my sister about the different challenges I face (35 years worth!)—– things that I usually keep to myself for fear of ‘boring’ someone. We both learned something special.” – Deb

“Isabella just started a Dexcom trial so she now has two devices on her 3-year-old body (Omnipod, too). When we go places I never encourage her to wear clothes that cover up her devices. I’d rather people see them and ask us what they are so we can spread awareness and educate them. In fact, Isabella is proud to show off her pods that we decorate…sometimes you forgot that even 3-year-olds can fight off stigmas, too.” - Kristina

“I am stupidly proud to admit that I am becoming a ‘regular’ at my gym. More people wave, say hi and even start conversations with me. More often people are asking me what my D-devices are. And I am more and more comfortable in telling them. And if further asked I actually find a little happiness in explaining what my (and our) T1D is and they actually want to know more. Erasing #dstigma one workout at a time and it really feels awesome. Really.” - Marie C

“I try to help change the perception of T1 by showing my friends/family that my daughter can do ‘normal’ activities and eat ‘regular’ foods!” - Zak

“I work as a nurse in a hospital and while my unit is not diabetes-specific, nearly all of my patients have some form of diabetes. While I don’t think it is appropriate to tell them about my diabetes, I try to have real conversations with my patients about managing their diabetes as effectively as possible. My hope is that I am doing my small part to reduce the #dstigma by giving people the chance to talk openly about their disease.” - Melissa

“My answer to reducing the #dstigma is to talk about my experiences. I don’t hide the fact the I have diabetes, and am always happy to answer questions. Can’t change the world all at once, but a little bit at a time can go a long way.” – Mark

Loopy hates stigma but loves ribbons.

And now, the winners!  The winners of the Tallygear giveaway (chosen at random by the Rafflecopter widget, which tallied blog comments and Twitter interaction) are Jen L, Gisela, and Kristina G! Thanks for joining the diabetes stigma (#dstigma) discussion and sharing your perspectives.  I’ve sent you an email and will send out your Tallygear fun stuff in the next few days.

Thanks to Tallygear for making this giveaway possible (be sure to check out their website and peruse their fashionable, and functional, products), and thanks to you guys for being an advocacy force that is changing the way society views diabetes, one moment at a time.  Like Mark said, “Can’t change the world all at once, but a little bit at a time can go a long way.”

What Do You Want to Talk About?

Last night’s #dsma chat was a particularly good one, because its intention was to generate discussion and feedback about what people in the diabetes online community (DOC) want to talk about.

Over the last ten years, the diabetes community has created some effective and supportive roots on (in?) the Internet. We are a vocal and passionate group of people (living with diabetes ourselves or caring for someone touched by diabetes) and the community seems to help people who are looking for their peers, looking to change something, or simply looking to share their stories. No matter what your level of involvement might be, the DOC is a place where you can find your footing.

So this question of “What do you want to talk about?” is a great one because it can help serve the needs/ hit the goals/ scratch the itch.

The evolution of the DOC is constant, and powerful, and we all have a chance to influence and shape it.  What’s important to you?  What do you want to talk about?

(And if you’re looking for more information on how to jump into the #dsma Twitter chats without losing your mind, check out this Diabetes and Twitter 101.)

We Are Not Waiting: CGM in the Cloud (Part 2).

Continuing from last week, I’m picking up this morning with Laurie Schwartz, mom to Adam (T1D) and an active and supportive voice in the CGM in the Cloud group.  In the last week, I’ve had many interactions with people from the CGM in the Cloud group and every single person has been happy to share their experiences, eager to share their expertise, and more than patient with my questions because their goal is to help people.  Laurie is no exception.  Laurie Schwartz is a retired dentist, now residing in Colorado and partnering with her husband in life, love, home-education of three kids, and pursuing a better understanding in diabetes management for her son.  And today, I’m really pleased that she offered to share her experiences with CGM in the Cloud here on SUM.

Kerri: What’s your connection to the diabetes world?

Laurie:  Diabetes has been a very large and recurring theme in my life since 1980.  
I have lived with diabetes from the perspective of a child watching a diabetic parent struggle.  I have experienced the disease as pregnant woman fearing the damage to an unborn child when diagnosed with gestational diabetes. The most emotionally challenging connection is definitely as a parent caring for a child with this disease.  Recently, I have added the view from an early diagnosis for myself as I become more and more glucose intolerant.

My father was a brilliant physician who suffered for decades from the complications of insulin dependent type 2 or he might actually have been misdiagnosed and was LADA.  His struggles with fears of lows as a surgeon, to poor control and long standing hyperglycemia from lack of frequent monitoring, to my witnessing all of the devastating complications he lived with has influenced me heavily in my approach to our son’s current management.

My third and youngest child, Adam was diagnosed in June 2008 with type 1 at the age of five years old.  Our diagnosis story is included in a book “Lifesaving Labradors.”

Kerri:  So how did you find out about the CGM [Continuous Glucose Monitor] in the Cloud group?

Laurie:  In the pursuit to have every tool possible for maintaining “normal blood sugar”,  I found myself embracing the benefits of the diabetic alert dog.  I have been active in the Diabetic Alert Dog community since training our alert dog in 2010. Willow Wonka is our son ‘s alert dog. Willow is a very skilled and polished dog, who has contributed significantly to our ability to maintain Adam’s a1c between 5.4 and 6.0 since June 2011. My use of the alert dog with the CGM has been our focus for better management.

On April 20, 2014, our close friend who heads a wonderful diabetic alert dog organization, Crystal Cockroft of Canine Hope for Diabetics, screenshot and texted me a picture of a Pebble watch with CGM information.   She thought I would like the technology.  I immediately wanted to jump on a plane to San Diego and pay any amount of money to acquire the technology.  I was shaking with excitement over the envisioned benefits the system could offer.  We had to have it!

The picture was posted on her Facebook friend’s page, Jason Adams. 
I contacted Jason minutes later on Facebook and he” heard” my desperation.  He assured me that a plane trip or an expensive fee was not required.   By April 22, just 48 hours later, we had purchased everything and had the system working.   Then, remarkably within just 3 hours, the CGM in the Cloud potentially helped us avert a dangerous medical crisis.

Kerri:  Within three hours?  What do you mean?

Laurie:  My desperation to acquire this technology resulted from a culmination of stress due to five months of bitter fighting with our mail-order pharmacy to stop shipping us 90 day supplies of warm insulin. Just the days earlier, I had finally gained approval from our insurance to receive local retail pharmacy, in the hopes it would be properly stored and handled cold insulin.  My recent success was a result of my efforts the previous week frantically arguing that bad insulin would kill my child because his body and our pump settings were all adjusted to the unknown effectiveness of warm less effective insulin. My claims were my true fears but I didn’t truly understand what that could look like.

We have had our kids in year-round swim team for four years mostly because the exercise is fantastic for blood glucose control.  We have systematically created a process to maintain stable blood sugars during practice with Adam’s consumption of simple glucose drinks.  We check blood glucose midway through practice or more frequently and one parent is always close by.

Our prior success in managing to maintain steady blood glucose even with potentially weak insulin gave us a false sense of security.  In hindsight, it was a recipe for disaster.  We were so comfortable with our carb/exercise protocol that I was even taking the alert dog to classes away from our son during some swim practices.

University of Denver Hilltoppers has 80-100 kids in the pool every evening.  On this night, when we had the Cloud system for the very first time, I was at dog agility class with Willow.   My husband was swimming his own laps in the open adult lane with Adam just 2-3 lanes away.  I watched on the CGM in the Cloud Adam’s CGM readings decreased and then report a 49 mg/dL.  I repeatedly texted my husband, then determined he was probably unreachable by text because he was swimming and for the first time since Adam was on the team, called the pool office and asked that Adam and my husband be removed from the pool to check his blood glucose.  The BG check revealed Adam was 70. For us, a BG of 70 is not necessarily an emergency but Adam had been consuming simple glucose all through the practice and should have been 100-140.   My husband gave him (an unusually large amount for us) 15 g of carbs without additional insulin, waited 15 min. and with Adam’s insistence that he was fine, let him back in the pool.  Adam got out five minutes later reporting feeling extremely low and sick.  His feelings of that symptomatic persistent low did not resolve appropriately as his BG would not increase above 70 mg/dl for about an hour even with additional large amounts of dextrose and interrupted insulin.

We can only attribute this never before seen persistent low to the use of the new effective insulin combined with the effects of heavy exercise on his body’s insulin sensitivity.  The timing of our access to the CGM in the Cloud was so fortunate, and I believe lifesaving.  The realization that we so narrowly escaped a tragic situation motivates me to continue to express my gratitude and assist in other T1 families learning about this amazing system.

Kerri:  That’s some tech validation, right there.  Is this in line with what you see being discussed in the CGM in the Cloud group?

Laurie:  The group was created to share the personal experiences and observed benefits of the system.  Our swim practice incident was just one instance that demonstrated that this technology advance to the CGM system was too important to keep private.

The group discussions are varied from sharing success stories, sharing how distance monitoring allows for parents to coach grandparents and friends while away with a T1 child, to assisting in technology set up questions, and to discussing future development ideas and approaches.

All of the contributions made by the group members assist in the direction of the future advancements to the system.  [Editor's note:  The emphasis added was mine, because her statement is beautifully true.]

Kerri:  How is this group moving current diabetes technology into tomorrow’s tech space?  

Laurie:  This is a technology was created out of necessity by real parents living with the shortcomings of what the industry had to offer.  The ever-growing bank of ideas and knowledge is flourishing with new approaches from all over the world.  This group is collaborating to create software and hardware advancements for T1 monitoring, data transfer, and utilizing this community’s conversation to draw the direction to which the effort should be best focused.

Kerri:  As I had asked John last week, do you fear the FDA?  Or the companies that make the CGMs?  What are your concerns about how Big Companies might view this movement?

Laurie:  I am concerned that greed or other human failings might slow the progress of this technology.  The FDA has its role to review the safety of medical devices.   In this case, the FDA has played its part by testing the inserted sensor materials, the exposure to the transmitter signal and reviewed the data reliability in studies comparing the BG and venous draws to the CGM readings.

In my opinion, the FDA has little place in restricting how the patients use their own medical data.   Once collected, the data is used for improving and intelligently monitoring diabetes management decisions and should not be restricted.  How the data is usefully transmitted is not an FDA matter, it should not be restricted or slowed.

The cloud group is not about redesigning wonderfully effective medical technology, but rather improving user interface. The biggest facet to effective diabetes management is constant awareness of your body and its metabolic status.  Making that information as convenient as glancing at your watch or smart phone is invaluable to the process. Dexcom is a leading company in the CGM industry, approved by the FDA as a medical device company and should focus its efforts on continuing to improve materials for interstitial fluid monitoring of glucose.  How the patient uses or shares the medical data should be a patient decision.  If the open market technology world designs advancements to support the Dexcom technology, the tech advancements can promote the company’s continued success in the industry.  This can be a win-win for Dexcom and the T1 community through the careful construction of continually improving the technology bridge.

Kerri:  Okay, so let’s look at some of the nitty-gritty.  How easy is it for members to get one another suited up and running on a remote device, and how does the CGM in the Cloud community help one another in this process?

Laurie:  Many new members have assisted each other in the set up process.  Jason Adams had contracted a freelance university student, Rajat Gupta to help him set up his own Cloud system.  Without hesitation, Jason shared that with me, a complete stranger, connected by desperation to help one’s child. Jason and Rajat assisted in our set up and many many more set ups since.  Rajat’s system has been very successful and easy to utilize for the non-tech families.  Our setup was literally a 20 minute process once the android, pebble watch, cords and case were purchased. Our heartfelt gratitude goes out Rajat for continuing to support this community with many uncompensated hours.

Jason Adams started the Facebook group to help share the clear benefits that having the Cloud system offered.  Since that beginning where Rajat offered an emailed application, the group has grown and and additional option to acquire the Cloud system has emerged with community support for a “Do-It-Yourself” system.  Regardless, of which way a PWD or CWD acquires the CGM in the Cloud, the system offers unique access to real time distance monitoring of CGM data.

Kerri:  And last, but certainly not least – why is this CGM in the Cloud technology important to you?  

Laurie:  Personally, every single advancement is an opportunity for better control.  I remain tormented by my father’s struggles with diabetes, and I am driven to help my child live better with diabetes.  We have many systems in place to assist us in our management goals.  We strive to maintain non-diabetic glucose ranges to the best of our ability.  The effort it takes to manage tight control is very complex. and requires constant vigilance  We appreciate various devices for their contribution and do not focus on shortcomings. We embrace any and all systems that can help us to make better, faster and smarter management choices.  We pursue the latest most accurate blood glucose meter, the least intrusive pump, the best trained alert dogs, the newest generation and best rated CGM and any extension that can be added to those systems.

The BG meter is a static point in time and as quickly as that reading is offered in a few short minutes a very different glycemic situation could be occurring.  Considering the margin of errors each and every BG reading may reflect, it is almost based upon tradition or superstition to why anyone uses a BG meter for making important decisions regarding the titration of a lethal drug like insulin.

The alert dogs are preemptive tools requiring proximity to the T1.  The DADs (diabetic alert dogs) give a signal that alerts us to impending changes prior to the meter and CGM. The dogs give us a heads up that we need to pay attention.  That heads up is usually significant in shortening the amount of time or our son is out of range with a high or low event.   The biggest drawbacks to their service is the necessity of proximity (limits set by distance scent can travel) and the handler’s ability to interpret and utilize the advanced warning alert.  By proper interpretation of the dogs alerts extremes glycemic events can be minimized and ranges tightened.

The CGM shows trends and data.  Reviewing data gives valuable information for discrete dosing adjustments to basal rates and bolus ratios in the short and long term.  There is overlap with the CGM high and low alarm alerts with the dog’s alerts to some extent, but not quite.   The diabetic alert dog’s alerts are usually ahead of the meter, CGM and symptoms and the CGM historically lags the event.  Similar to the dog’s scent ability, the CGM is also restricted by proximity through the limits of range of signal from the sensor’s transmitter to the receiver.
 
What the CGM in the Cloud uniquely brings to our arsenal of management tools is real time distance monitoring.  No other tool allows for the person with diabetes to have the assistance of a person at distance contribute to the management in real time.  The distance component is lacking in the current management tools.  By having the Cloud broadcasting a constant flow of information that can be accessed by interested parties, those parties can assist in collaboration for better treatment decisions, faster or slower or more discrete interventions.

From a social and emotional perspective, the Cloud system also offers a more discrete monitoring contribution.  With this technology, we can assist our child in treatment decisions in a more timely fashion but also with less unnecessary intrusions to the parent-child relationship.  We can lessen our queries for CGM readings or BG results and more unobtrusively suggest a timely intervention of a BG check, suggest a small carb snack or insulin dose.

 By utilizing the Cloud, some of the relationship interruptions caused by diabetes are minimized.

With more intelligent distance monitoring by parents; the teachers, babysitters, grandparents and parents at play dates have support staff, experienced diabetic managers on their team to help the T1 child safely stay closer to normal ranges.

For a parent to develop strategies to promote safe independence, safety need not be compromised.  Traditionally, parents gave their children carbs before bed.  The bedtime snack was to help prevent a low during the late hours.  That same snack probably caused a high but without testing or monitoring the highs were not confirmed and the child was hopefully expected to survive the night without a deadly low.  Sleepovers and bedroom assignments were dictated by proximity to parents’ bedroom because that was needed for monitoring.

Sending a child to participate in a sporting event or physical activity usually involved increasing the blood glucose, so there was a margin of error for the exercise induced energy drain.  With the CGM in the Cloud, more timely monitoring can provide the opportunity for the parents to avoid unnecessary highs as a prevention technique for lows.

The real story is in those who created this technology. The determination and drive of these parents with T1 children to work tirelessly to create a system that overcomes the limitations of current medical technology is so impressive.  The value in this system is that it was forged out of necessity.  These parents had a vision and they created and labored to succeed. 

Their decision to their solution with complete strangers speaks to their integrity and generosity.  Our interest, gratitude and support should be focused on their efforts and selfless contribution.  These individuals have careers, families, sleep-deprivation from living with children with T1 and they are not looking for the fast buck or to “cash in.”   Subsequently, others will come looking to help and develop this process. There will undoubtedly be some looking to make a quick buck,  but the developers released their work to open source for the good of the T1 community.  Regardless of who continues to develop this system, my hope is that the diabetic community will be improved as this much-needed technology continues to develop.  I offer my information as an end user of the CGM in the Cloud and my enthusiastic support of the system for its life saving and life improving capabilities.

Thank you so much, Laurie, for sharing your story.  To find out more about CGM in the Cloud, you can visit the Facebook group (up to 2,779 members now) and connect with folks who share your desire to have the data where, when, and how you want access to it.  And later this week, I’ll show you the system they helped me build and why it matters to me, as an adult with diabetes.

Follow

Get every new post delivered to your Inbox

Join other followers