Room Service for the Rebel Pancreas: My Recap of the Lilly Diabetes Innovation Summit

*Knock at the door*

I answered, in my pajamas with my hair totally disheveled, no coffee consumed yet.  At the door was Anna*, a kindhearted employee of the hotel who was delivering fuel in the form of diabetes-friendly scrambled eggs… and, yay!, lots of coffee.

“What brings you to Cambridge?” Anna asked, striking up a friendly conversation.

I explained that I was a diabetes advocate there for a Pharma innovation event bringing together bloggers, media, pharmaceutical and diabetes industry folks, and others to work toward a better future for all people with diabetes.

Anna’s mind was blown.  The excitement on her face said it all.

She had recently been diagnosed with diabetes and was in the process of sorting out treatment with her doctors.  Anna was reinvigorated by the idea that other people with diabetes, and those who care about them, got together to engage so passionately.  She had felt alone this entire time.  Now, a spark of possibility was visible.

That interaction, albeit brief, stayed with me during the Lilly Diabetes Innovation Summit, the event I had briefly discussed with Anna.  Anna was a reminder of why we need more hope infused into diabetes management for all types of diabetes (and, human beings!).  Even with all of the knowledge, resources, and tools available, diabetes is a heavy presence to carry by oneself.  Wherever the future takes us with diabetes, it should lessen this load in order to improve quality of life (QoL) for everyone touched by this condition.

***

Before I dive deeper here, let’s take an Intermission to talk disclosures, and my own related stances, for the sake of transparency:

I was invited by Lilly to attend the Diabetes Innovation Summit (sponsored by Lilly) at the Cambridge Innovation Center on May 3-4, 2018.  I accepted the invitation.  Lilly covered my travel, hotel, and incurred expenses for this event. 

I am under no obligation to write about this, but, as you can see here, I willingly chose to do so.  Opinions expressed are my own.

Advocates do this on their own free time.  It is an honor to get to advocate like this, but I want to make sure readers hear directly that this involves a lot of hard work, too.  

The devices which we viewed at the Innovation Center were prototypes, and constituted proprietary information.  Lilly answered what they could, and acknowledged that they could not share everything related to development at this time.  We were unable to take photographs of the laboratory, nor device prototypes.  Thanks for your understanding. 

I will try my best to convey what I learned in this blog post, much of which is paraphrased from the various sources we met while in Cambridge.  I also live-tweeted important snippets of the event when time permitted.  Please see my tweets from May 3-4, 2018, for that information.

The only diabetes story I can tell best is my own.  I will never proclaim to represent The Whole community of diabetes because that would be an absolute disservice to everyone else’s individual diabetes, and life, experiences.  That said, I do try to put a face to what makes diabetes advocacy so important: the human beings behind everything that we do, who deserve improved quality of life with diabetes.  It is for this very reason that I believe advocates should always be present at events like this.  I am grateful to have the opportunity to advocate at this level, and I want to thank Lilly for hosting us.  Thanks also to MSL Group for coordinating our travel and schedules so that things ran smoothly.

I grapple often with my own nerdy healthcare interest in the good provided by Pharma [life-saving and life-sustaining prescriptions being one example, and good employees who have personally been kind to me throughout my own life circumstances being another], and the legitimate, persistent, life-altering concerns of access and affordability that the diabetes online community (DOC) knows firsthand.  I could have articulated these concerns more clearly in the past, and I am owning that here.  This time around, I brought up access whenever I could, as did many other advocates in attendance.  Our points were received well [I do not believe various points of view necessarily need to be mutually exclusive], and I hope the future becomes brighter through this honest engagement.

This blog is thorough in its length and detail in order to provide you with lots of information, as requested. 

This concludes Intermission.

***

The Summit kicked off on Thursday morning with introductions at the Cambridge Innovation Center. In attendance were Lilly folks who worked on-site in Cambridge, as well as others visiting from the Lilly headquarters in Indianapolis. (There are currently about forty employees at the Cambridge Center as a point of reference).  We also caught up with diabetes advocates and media writers- some old friends and others new fast friends for me.

As some background in layman’s terms, Lilly- together with external collaborators to be discussed later in this post- plans to create a “connected diabetes ecosystem.”  Essentially and ideally, consumers can expect a “smarter” diabetes management system encompassed by a hybrid closed-loop insulin pump and/or an insulin pen with a computerized “brain” attached.  Lilly stressed the urgency of a comprehensive design that allows users to simplify the amount of effort involved in daily diabetes management.

The bells and whistles supporting this ecosystem will likely include a distinct phone app software, algorithms relying on intelligent trend analyses, continuous glucose monitoring (CGM), blood glucose meter results, and, of course, the individual characteristics and experience of the user with diabetes, combined with their healthcare team’s wisdom.  There was also heavy suggestion of a potential “coaching” program a la other diabetes apps like MySugr.  For this description, I have paraphrased a bit from Wil Dubois of Diabetes Mine, who does a great job articulating the connected ecosystem details concisely here.

After breakfast and coffee, we took a tour of the laboratory.  Lilly is the Willy Wonka of pharmaceuticals, whether in Cambridge or Indy, and I mean that respectfully.  Every tool and gadget imaginable can be found in the Cambridge lab, and Lilly has the capabilities to make a fully-functioning product right there in one spot.  This includes on the molecular level with insulin manipulation. Lilly can sketch a concept, generate a prototype, and produce a design all in a day’s work, with additives such as 3-D printing aiding this process.  Growing up in the Boston area, I know firsthand how much brilliance and ingenuity is centered in the Cambridge hub, and Lilly has chosen to develop its systems here for good reason.

In the bioengineering lab, we spoke directly with the designers working on the Lilly products in the pipeline.  We met a specialist in fluidics engineering, who was also the father of a child with type 1 diabetes.  His job entails deciphering how fluids such as insulin will maneuver safely and effectively in diabetes technology, using various valves and pressures.

We moved on to the Formulation Lab and were instantly struck by that all-too-familiar perfume scent otherwise known as “Insulin.”  Here, giant vats of insulin and biologics can be tweaked to ensure safety and efficacy under certain circumstances, such as temperature stability and absorption areas/rates which drive outcomes and value.

Lilly Lab photo

One photo that was okay’ed to take outside of the lab: A live VLNS lab rat, white coat and goggles on point!  ^

Next up was the Lilly Panel Question and Answer Session, in which Lilly employees provided us with more detail about the ecosystem, and where it plans to take us.  For as long as I can remember, various connections of mine affiliated with Joslin Diabetes Center in Boston have said, “You have *got* to meet Dr. Howard Wolpert!”  Well, finally, here was my opportunity.

Lilly May 2018 Panel

Dr. Wolpert is now working at the Lilly Cambridge Innovation Center, and he lived up to all of the good things others have said about him.  I got to chat further with him at dinner, and was totally impressed with his empathy and understanding for what we go through day to day with diabetes.  After all, he is married to a researcher with type 1 diabetes, so he gets it.  At the Lilly panel, Dr. Wolpert acknowledged how diabetes management has not aligned well with patients’ lives and individual nuances in the past, and Lilly’s innovation is an opportunity to change that for the better.

We also heard from Lilly’s Matthew Clemente, Chief Technology Officer; Rhett Alden, Chief Digital Architect; Kevin Cammack, Senior Brand Director at Lilly Diabetes; and Marie Schiller, VP of Connected Care and Site Head in Cambridge.

Multiple daily injections (MDI) are a market access point for the connected ecosystem. Selling points of the smart insulin pen include dosing suggestions based on tracked meal, exercise, and stress (measured by cardio rates) insights.  Bluetooth and phone app guidance help the user to have some of the perks formerly only available with insulin pumps, while maintaining the simplicity of using insulin shots.  While the design is still in the works, the pen may be in the form of a disposable platform, or possibly a small attachment piece.

Rapid usability feedback sessions, in which Lilly designers garner input from consultants and patients, drive the user-centered design approach.  Personalized preferences may be honored with on/off, opt-in/opt-out toggle features.  For example, not everyone may want constant notifications or loud alarms, and users may be able to adjust these options accordingly.  If their interests change the following week, they can update selections to reflect this.

We were among the first people in the world to see Lilly’s automated insulin delivery prototype.  In terms of length, width, and height, the pump prototype reminded me of the small Altoids tin shown in my palm in the photo below, if only the tin were circular.  Flexibility, usability, safety, and “upgradability” were all important factors in Lilly’s design. Lilly aims to make diabetes management simpler, not just for “uber-users,” but for anyone of any health literacy background.

Altoids tin

This pump can be worn in the usual injection/infusion site areas of the body.  The pump’s short tubing will connect to standard Luer Lock infusion sets already in existence, but we are pushing hard for Lilly to design their own infusion sets as well.  The option to secure the pump directly to the body with medical tape, similar to how many of us wear the Dexcom transmitter, is a possibility.  I also hope to see a pump clip in the future.

While there will be smart phone interoperability with this pump, the pump can also run in automode if the controller is not present.  (Currently, there is no screen included on the body of the prototype pump itself).**  The efficacy of certain features is still being worked out, but one example in mind is a button on the pump’s outer shell** with pre-set bolusing capabilities.  So, for example, if you lose your smart phone in a taxi after a wild bachelorette party, you might still be able to press a button and give yourself a pre-determined dose of insulin as needed.

On the flip side, safety could be an issue there.  For example, you might have thought you pre-set the “button dose” to 0.25 units of insulin, but in reality, it had been set to 1 unit many months ago.  Suddenly, the lost phone in the taxi cab is not such a big deal…  There is also the idea that people are rarely detached from their phones nowadays, which bolsters the notion of phones homing the algorithms.  I give Lilly tons of credit for being cognizant of these scenarios and actively working towards user-friendly, reliable, safe, innovative features.  Lilly knows insulin well, but they are also proving to take the various elements of insulin’s delivery to new heights.

The pump will be piston-based with a flexible reservoir, and can hold 3 milliliters (mL) of insulin volume.  Sites will be intended for three days of use.  Dexcom G6 will communicate with this pump, and a model-predictive control algorithm will guide the way.  Clinical studies are currently ongoing.  How one will obtain Lilly’s hybrid closed loop system when the product arrives on the market is still in the works as well.  A journalist in attendance noted the benefits of healthcare providers writing a prescription in one fell swoop, which would cover all of the moving pieces for the automated system.

Similarly to the way Anna’s breakfast delivery re-fueled my hungry stomach (and spirit), Lilly’s ecosystem is sort of like ordering room service for your rebellious pancreas.  The keyword we heard the most while in Cambridge was FLEXIBILITY.  Lilly recognizes that each person with diabetes is a unique individual, and management styles should reflect that accordingly.  By catering to users’ personal preferences, Lilly hopes to make engagement easier.  Diabetes management features, a la carte, so to speak.  For the advocates in attendance, this is all awesome, so long as the ultimate price tag is more reasonable than hotel room service mark-ups.

As noted previously, Lilly’s pump will connect with standard Luer Lock infusion sets already in existence on the market.  Having experienced the havoc-wreaking of defective insulin pump infusion sets repeatedly in the past, infusion set reliability is huge to me in any diabetes innovation going forward.  The fanciest pump in the world is not worth much if insulin is not getting absorbed into the human body properly.  Among others in attendance, I also encouraged Lilly to consider using their engineering brainpower to create their own high-quality infusion set product.  I feel so adamantly about this that I have offered to meet with Lilly to discuss this further, as I am only a short car ride away from the Innovation Center.  And I sincerely hope we make a point to follow up on this together.

All that said, when I was sick on the couch with ketones while going through the faulty infusion set fiasco (not developed by Lilly) a few years back, I never could have imagined I would get the chance to discuss the design of future products directly with the manufacturers.  On a personal level, this brought me full circle as to what I have endured with diabetes technology, and how I can play my own small part in making things better because of these stories.  Health tech is positively life-changing when it works as intended.  But we have to do our best to ensure safety and quality so that human beings are not hurt in the process when bumps in the road appear.  Lilly was absolutely cognizant of these concepts and open to hearing us out, and I believe this reinforces another reason why advocates are always needed at these events.

A Lilly panel Q&A would not have been complete without diabetes advocates raising the issues of access, and raise the issues we did.  I was proud of our cohort for our expression of a life and death topic in our community.  Insulin is the fuel running these technological developments, and, as an essential for people with diabetes, insulin is the starting point from which other access flows.

I reminded the panel that Lilly is in a unique position as a diabetes pharmaceutical giant now dipping into other aspects of diabetes management and innovation.  They have the ability to set the tone regarding access to this innovation, and, due to the sheer number of people living with diabetes worldwide, their business will be viable no matter what.  Making these services available to diverse groups of all backgrounds – particularly those vulnerable in socioeconomic and psychosocial facets – would be an admirable route with positive ripple effects throughout healthcare.

To Lilly’s credit, they listened and acknowledged our points.  Marie Schiller sticks out to me for repeatedly noting that any innovation Lilly develops is moot if it cannot get to the people it purports to serve (paraphrased here).  Through various testing and outreach opportunities, Lilly intends to make access more equitable.

Day 2 brought us to the external collaborator panel, where we heard from representatives of Dexcom, DEKA Research and Development Corporation, Rimidi, and Canada’s McGill University.

Lilly External Collaborators Panel May 2018

In summary, the panel relayed their great trust in Lilly’s ability to make an advantageous product for the diabetes community.  Heck, that’s why they are joining forces with Lilly!  Dexcom’s Dana Cambra discussed how the Dexcom G6 has changed everything for the better, boasting a new algorithm, membrane, and applicator.  Lilly’s Marie Schiller discussed how insulin is a “really hard molecule” in terms of manipulation, and how DEKA’s expertise can provide a mechanical solution.  Rimidi offers an intuitive EHR (electronic health record) platform which could suggest certain treatment options (such as Lilly’s future ecosystem) to patients identified as possible candidates.  McGill’s Dr. Ahmad Haidar is the brain behind the algorithms used in Lilly’s designs.  Dr. Haidar emphasized lessening the diabetes managerial burdens we currently face through this technology.

“Adherence” data on insulin remains somewhat scarce.  [I still do not love ‘compliance’ or ‘adherence’ terminology, as, arguably, the issues lie within our broken healthcare system much more than they do with patients’ willingness to feel better].  We can download pumps and CGMs, but that still only gives us a tiny glimpse into reality.  Through clinical studies, Lilly will be able to garner more useful, in-depth information, to include smart insulin pen dosing details.  Lilly’s partnership with Tidepool could be one example of how Lilly learns more about people with diabetes through data analysis.

This panel was as good a place as any to chime in about access.  I wondered aloud how much our diabetes data is saturated by the health-literate, privileged folks who just so happen to be the type to engage with diabetes tech.  I also asked how anyone- whether an informed blogger, or an Average Joe Diabetes, might eventually take the first step to gain access to this multifaceted diabetes management system.  The short answer is that such points of entry are still being ironed out as the system develops over time.

In my opinion- earned by hours spent fighting with insurance, just like every other person with diabetes- solutions to these kinks need to be highly prioritized in order to make the Lilly ecosystem quickly accessible, and successful, for all.  The advocates in attendance suggested that Lilly work closely with diabetes clinics and healthcare providers in various locations, treating diverse demographics, in order to support awareness and feasibility of these future options.

We also briefly discussed the healthcare industry trend towards value-based care.  With healthcare providers and patients, alike, being impacted by outcomes data, innovation such as Lilly’s will have to prove its worth, too.  I voiced concern- which goes far beyond Lilly’s innovation and more so towards this value-based trend in general- that there will always be patients, particularly in complex autoimmune disease situations, whose outcomes will not align with the extraordinary effort they put into chronic disease management.  I asked the rhetorical question of how we will support them so that they do not fall through the cracks.  Lilly takes angles like these into consideration when targeting therapies to deliver on individuals’ needs, and the short answer here is that they anticipate that their innovation and collaboration will prove helpful.

We later participated in a lively ideation session led by Matchstick LLC, complete with colorful graphics drawn on the spot by ImageThink.  Here, our hosts picked our brains regarding design.  For our example, we created our ideal smart insulin pen, complete with the likes of insulin dosing memory and suggested/predictive dosing capabilities; sound, which could be formatted to suit the user, and also to ensure safety (clicks based on number of units could help prevent or alert to inadvertent overdose, for example); and phone app support.  The pen would likely be in a disposable format, rather than having a “smart” attachment, and it would hold 300 milliliters (mL) of insulin- mitigating insurance coverage arguments being one reason we leaned this way.

Lilly Insulin Pen Design Workshop May 2018

Smart insulin pen design poster by ImageThink. ^  Insert all obvious Friday afternoon jokes from the crowd, too.

I departed from the Lilly Summit feeling more optimistic than I have felt about diabetes technology in a long time.  After going through my past insulin pump trials and tribulations, I need something new and exciting to hang my hope hat on, and I feel that the Lilly innovation is that hope.  We require more options in diabetes-land, and Lilly is a Goliath that can compete in a revolutionary manner.**  I want everyone with diabetes to have access to optimal tools for diabetes management, and my hope also rests on the idea that we can make quality of life better for all of us through such accessible means.

Thanks again to Lilly for hosting us!

 

 

For more information on the Lilly Diabetes Innovation Summit, check out these previously-published pieces linked from:

diaTribe

Stacey Simms

Diabetes Mine

 

 

* Name changed for privacy purposes.

** Updated later on May 21, 2018, for clarity purposes.

 

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Tequila Shots?!

Okay, Lantus shots.  Almost as much fun, right?

Many thanks to Jeremy of 70-130.com for his insightful piece on various insulin pump and insulin injections perspectives.  I found it therapeutic to reflect on my journey from shots to pumps and back to shots again.  You can read Jeremy’s blog profiling some #doc viewpoints here.

 

 

 

 

“I never meant to make you cry, but tonight / I’m cleanin’ out my closet.” -Eminem

My apartment could easily get selected for a TLC special entitled Hoarders: The Diabetes Edition. I have mountains of old supplies stocked up just in case the apocalypse ever occurs and I for some reason need a 6-year-old infusion set for an insulin pump that I no longer utilize…  (Note: Proper medical guidance instructs never to use expired supplies.  I am in no way recommending that you do so.)

I have trouble discarding diabetes supplies because they represent my lifeline, even if they are expired.  The thought of running out of supplies freaks me out.  Temporary relief arrives when my mail order pharmacy prescriptions knock at my front door, providing life in predetermined 3-month packages per my insurance provider.  But what if I drop and shatter a vial of insulin accidentally?  I may need my fridge stockpile to get me through until my next order.  Most of us are privileged enough to obtain medication through various means, however much of a longwinded telephone loop-de-loop headache that process may render.  If we lived somewhere else or during some other time, we may not have been able to count these blessings.  My bedroom’s diabetes supply closet is a constant reminder of this privilege.

There are certain items that I can’t bring myself to throw out, but probably should.  I returned to multiple daily injections in December after going through the hardest time of my life- a period in which the only type of infusion set that would work with my body type just so happened to have a product defect in multiple lot numbers.  I spent a majority of my time on the couch chasing ketones and brainstorming with insulin pump company representatives and my medical providers as to how we could correct this problem.  I fought going back on shots tooth and nail, bitter that an infusion set component measuring only a few centimeters long could have such dire effects on my health when it was not functioning properly.

“My quality of life will be ruined on shots!” I exclaimed.

“Can you honestly tell me that you have much quality of life right now?  You’re on the couch with ketones every day fighting for your life,” my wise doctor replied.

And so I finally caved and returned to a Lantus and Humalog regimen.  It was rocky at first, but I am now enjoying my time (mostly) ketone-free.  The blood sugar management still has its ups and downs, an inherent trait of type one diabetes.  There are days when I miss the insulin pump’s fine-tuning aspects wholeheartedly.  I still glance down at my waist to check the time on my pump from time to time, only to discover that what was once such a major part of my life is not there any longer.

When I first transitioned off of the pump, my resentment was palpable. Screw you, pump! I’m moving on! This was a mental game in which I tried to convince myself that this was the right move.  A majority of modern day diabetics use pumps, and I felt crazy that this was not a viable option for me.  Yet time and time again, my infusion set changes proved that this was not working for me personally.

Subsequently, I grieved the pump’s loss under a mask of anger and sarcasm.  During some particularly emotional days, I still think it’s Halloween mask time.

Yet after this struggle, there remains a part of me that cannot bear to throw out the pump supplies.  They have defects, so I cannot donate them to charity for fear of putting someone else through ketone hell.  Instead, they crowd my coat closet by the front door, my bedroom closet from floor to ceiling, the space under my bed, and other spots below stacks of grad school books. I might need these supplies again one day, right? They are a lifeline to another time, another method of managing this jerk of a disease.

Perhaps I will try again.  Not yet.  But perhaps.  The pain is still too raw and we still have too much work to do on the shots before a new decision can be made.

I would be lying if I said that I am not still processing my frustration and disappointment in the entire faulty infusion set situation.  Heck, I’ve certainly blogged about it enough.  But I am more cognizant of the concept of forgiveness and enjoying the present moment now.  I saw firsthand how quickly health can change, what it feels like to watch yourself dwindle away into nothingness.  If it was not for determined doctors and nurses who believed me and did not give up, I may not still be here.  But I am here, so I need to make the most of this life.

Just in case I ever need the insulin pump collecting dust on a shelf, its infusion set and reservoir packages will decorate my room for now.  Whenever I move to a larger residence, I will box them up and put them in a storage closet, packed away neatly with the other memories of my life.  Out of sight, out of mind.

Honestly, though, whether insulin pump enthusiasts or shots supporters, we do not need bigger apartments with huge walk-in closets.

What we really need is a cure.

pump boxes

I Can Because Someone Believed That I Could.

I was running late one day during junior year of high school and our Spanish teacher, Ms. K., questioned me in front of the class.

“Why were you late again, Ally?”

“Umm… we got out of Math late today.”

“Fair enough.  And who is your Math teacher?”

“Mrs. H.”

“Okay, I’ll chat with Mrs. H. later on today.”

Umm, what?!!  Well, there goes my great excuse!  Mrs. H. knows that we were not late today! 

As my classmates filed out into the hall at the conclusion of class, Ms. K. held me back, deciding to give me one more opportunity to come clean.

“Ally, why were you late?  For real.”

“I didn’t want to say it in front of the class, but I was having issues with my blood sugar,” I replied, staring at the floor.

“I’m so sorry.  I wasn’t thinking of that earlier.  Anytime you have to leave the classroom and do whatever you need to do- please just take care of yourself, okay?” Ms. K. responded, suddenly concerned.

“Okay.  I’m sorry again.”

When I tell that story to my coworkers, I usually tell it as a joke.  In my head I know full well that it is a rationalization: Hardy har har, see, diabetes comes in handy sometimes!

The truth of the matter is, being so far removed from that incident in high school, I’m not entirely sure what actually transpired when I look back now. My best guess is that diabetes became a convenient excuse when I saw that I was going to be disciplined; there was not a major diabetes emergency going on that made me late for class. In that case, I owe Ms. K. a coffee/beer with my apology the next time I see her.

At the same time, did diabetes sometimes make me late because I had to make an extra stop at my locker to check my blood sugar, or go to the bathroom when my blood sugar was too high, or scarf down a granola bar when I was low? Absolutely. The mature thing would have been to discuss this with my teachers beforehand so that they knew that I was trying my best. Alas, I was a dorky high school kid just trying to fit in.

You are in the driver’s seat of your life; diabetes is just the pesky younger sibling trying to hang out with the cool kids. Do not let diabetes be the excuse that gets you out of detention. If you mess up, take responsibility. But also recognize that diabetes does like to throw some wrenches into the mix of life, and you should be upfront with those who may need to understand. Tell your teacher or your boss if you are not feeling 110% one day and need to take a breather outside. I wish that I had fostered that discussion in hindsight.

In grad school I have been blessed with professors who have taken a keen interest in my academic development. I am open with them about diabetes because I am more comfortable in my own skin now compared to high school. On the particularly rough days with my insulin pump problems in the fall, my instructors showed me selfless compassion. They respected that no matter how sick I was, I was going to get my work done on time and do it well. (Something about stubborn Italian pride, right?) Yet on many occasions, they held me back after class- not to scold me for being late, but to make sure that I was okay. Every ounce of hard work that I put into my degree is a reflection of the confidence that my instructors hold in their students’ abilities.

I can.  You can.  We all can.

I can because academic instructors believed that I could- diabetes and all.  In the process, I started to believe, too.

gpa

“Shots, Shots, Shots, Shots! Everyyyybodyyy!!”

(Thank me later for getting that LMFAO classic stuck in your head.)

May 6 will mark six months since my return to multiple daily injections (MDI), or, as I like to say, “shots.”  Let’s call it like it is, people.  It’s sticking a needle in your arm, butt, back, stomach, leg many times per day to deliver life-sustaining medication.  It is not a cure, but it gives us life each day.

At a recent doctor’s appointment I proclaimed, “This rollercoaster isn’t working.  I need to return to the pump!”

To which my doctor countered, “And you told me the same thing about the pump before you went back on shots, Ally!”

I responded with a stunned face that only a googley-eyed emoticon can convey.  My doctor was right.  Diabetes is not as simple as insulin pump versus shots versus Afrezza versus whatever floats your boat.

If I have learned anything in the past six months, it is just how different everyone’s diabetes is and just how different our treatment methods may be- whether out of personal choice or simply out of necessity.  I’ll give another plug for Spare a Rose here: Most of us in the #doc are blessed to have any access to insulin, never mind the added bonus of having some flexibility in treatment options.

With that said, I know I seem like a broken record about the insulin pump.  I want to set things straight here once and for all, while providing an update about my shots journey for those who may be interested.

Insulin pumps, when functioning optimally, are amazing devices.  Going on the pump in high school opened up a whole new world to me.  My parents breathed a sigh of relief that I could enjoy being a dorky kid with a bit more freedom back then.  There are things that I miss immensely about insulin pumping: fine-tuning insulin doses, temporary basals, basal adjustments in one minute flat, carb-count/correction factor/insulin on board “wizards,” stability in blood sugar values on the good days.

If the pump works for you without many issues, all the more power to you. I want you to use whatever makes you feel healthy and happy- the same goals that I want for myself. In my rare case, going on shots had to serve that immediate interest in order to save my health. Do what works for you.

You can achieve a healthy lifestyle on shots, but it is more of a clunky, awkward sort of dance.  Once that Lantus is injected, it’s there for the day.  On Friday, my pancreas decided to rev up a notch (sarcasm), and for some odd reason I could not get my blood sugar to rise all day despite having taken the same dose of Lantus that I take every single day and hardly bolusing Humalog.  I force-fed myself almost all of the leftover Easter candy to no avail.  Good Lord did I miss the temp basal feature of the pump then! I longed for the personalized touches of modern technology that brick and mortar insulin injections simply do not afford.

I would ultimately like to ease into an “untethered” regimen of background Lantus in case of pump failures coupled with insulin pump usage again. However, this is quite complex, and we are not quite there with the shots yet. More details need to be worked out in terms of my basal and bolus plans. We are not settled into our comfort zone at this time, but we will get there.  For now, we are enjoying the fact that insulin is getting into my body without technological glitches causing ketones each day, a freedom that I will never take for granted again.

Many topnotch brainiac doctors have looked into my pump issues. We know that the product did not work for me personally. But we also know that a pump-centric solution has not yet been provided. Right now, we do not need to add another factor to the equation. We’ll give shots a shot (see what I did there?) for another few months, at least.

I find myself daydreaming about a cure so often now: the party on the tropical island with the entire #doc; the sugary drinks consumed without having to stop and bolus- whether that be via insulin pump or shots; the happy kind of tears.

As a child when that elusive diabetes cure was “ten years away” (cue inside diabetic joke laughter), my father used to tell us about the enormous cure party we would have. There would be a table in the middle of the front yard with a sledgehammer on it. We would smash my blood glucose meter, syringes, and other diabetes supplies into tiny pieces to signify victory over a vindictive disease.

The sentiment was well-intentioned, although today I must admit that I laugh a bit at that particular daydream. If I were cured tomorrow, all of those diabetes supplies would immediately be donated to people who needed them in the interim. The supplies have nobler uses than being crushed by a sledgehammer.

We should be thankful for the supplies that we have keeping us alive right now. If an insulin pump does its job for you, perfect. If Afrezza is your drug of choice, inhale away. If shots suit you better, go for it. However you choose to do so, just fight the good fight until there is a cure.

Please keep those cure daydreams alive by continuing to advocate so well. #weneedacure

Pros and Cons, Do’s and Don’ts, X’s and O’s

001

I could write a 200-page manifesto about the ups and downs of 2014 while insulin pumping and then transitioning to shots, but for the sake of not straining our eyes by reading a mile-long exhaustive blog post, here are some main points worthy of highlighting:

Pros of Shots:

  • I know with certainty that insulin is getting into me.  A reliable insulin delivery mechanism is something that I will never take for granted again.  There is something to be said for a good, old-fashioned jab with a syringe.  Plus, ketones have packed up and moved out for now.
  • The mental relief that this offers is difficult to articulate.  We are slowly but surely building back trust: a trust in insulin that it will do its job, a trust in eating a nutritious meal and knowing that insulin in my body will cover that food, a trust that I will not wake up in the middle of the night in a ketonic state, and- frankly and in violation of the “double negatives rule”- a trust that I will not not wake up one day due to ketones.
  • Trusting in the doctors’ knowledge:  While taking over twenty units of long-acting insulin such as Lantus after a decade of pumping might not be a big deal to some diabetics, for me it was a huge mental mountain to wrap my head around.  Multiple doctors chimed in throughout this process, thankfully.  One in particular yielded emails at all crazy hours of the weekend.  And the other reassured me over the phone that I would be okay, her voice calm and confident.  On the first day of injecting, I said a quick prayer and reminded myself that these doctors went through graduate and medical school and have been doing this for many years; I had to believe in their expertise.  So far, they have proven that they know their stuff!
  • Taking long showers without rushing to get out and reconnect to life-sustaining medical equipment.
  • Only one insertion (Dexcom) about every two weeks.
  • Wearing only one site (Dexcom).
  • Crossing a “Never Have I Ever” trump card off my list- at least if playing with other diabetics.  (I never liked that game, anyway).  “Never have I ever given myself an insulin injection in the stomach…”  Oh wait, I just did it three times today without flinching.
  • Finding the humor in the situation.  For example, shooting up at a rest area recently while a horrified mother spotted me and promptly peeled out of the parking lot, the wheels of her minivan screeching, after she unfairly assumed that I was a heroin junkie.  Far from it…
  • I don’t need a behemoth-sized-suitcase filled with back-up pump supplies when I travel.
  • Trying new things:  Even three months ago, I never would have consented to trying a different way.  I have the #doc and some very patient, compassionate doctors to thank for renewing my strength and for holding me up on the bad days.
  • Honesty.  This process has made me more upfront with myself and my doctors.  For years, I skirted around the issues, felt trapped in one method of diabetes treatment, and perhaps did not accept how multifaceted my insulin pumping problems had become.  No one likes to feel desperate, but I can see in my old blog posts, emails to pump reps, tears cried to my doctor, and so on that what I was doing on the pump was not working as optimally as it is intended to; hence, we needed to at least try something else.  A few weeks later, here we are…

Cons of Shots:

  • I’d be lying if I said I didn’t miss the pump (very strong emphasis on the “good pump site” days).  The stability in my blood sugar was better on the pump, but perhaps some of the severity of the recent “shots rollercoaster” is the fact that it’s only a few weeks into the trial and we have a lot of insulin dosing details left to address.
  • The pump is much more convenient.  Out of habit, I still reach down to my side to take a correction bolus with my invisible pump friend, only to find him missing in action.  I am in the process of waiting out an insulin pen prescription, and I hope that this makes things a bit easier in the day-to-day aspects of shots.  Currently, I prefill some syringes with typical Humalog doses or I manually fill the injections, making it a somewhat timely and tedious process.
  • Shots require more thinking.  I have to really focus when I draw up the amounts.  I quadruple-check that I have drawn up twenty-three units of Lantus, rather than Humalog.  (My doctor recommended using nail polish on the insulin boxes and bottles to help differentiate between them.  I know that there are colored lids, ties, etc., that you can also purchase.  The bottom line is that you want something that will catch your eye and make you focus on taking the correct type of insulin).
  • Where, oh, where, have my temp basals gone?  Plus one for the pump in that regard.
  • Once the insulin is in you, it’s in you for the day.  Currently, I take one Lantus dose daily, but we may transition to twice a day for some fine-tuning.  I am too high during the daytime, but at night I crash harder than a college kid at her first keg party.
  • Bruises.  Lots of them.  My hand-eye coordination has always been a bit defunct (i.e. my kindergarten teacher sent a note home telling Mom to have me practice cutting and coloring in-between the lines over the summer).  Perhaps this deficit is why I simply suck at shots.  It’s the opposite of “you can give it out but you can’t take it.”  Actually, I am pretty darn good at taking shots without any tears, but when it comes to giving them, the “stab repeatedly” method doesn’t work so well.
  • Lantus burns.  It’s not excruciating, but it’s there.
  • Socially, it’s either inject in public, or scurry off to the bathroom for every injection.  Because I find that I really have to concentrate when taking Lantus to make sure I’m drawing up the right dose, of the right medication, at the right time, I often take that shot in the bathroom at work so that I can have some privacy to focus.  I do not have much shame about taking injections in public, but it is more the “always having to have the diabetes conversation” element that I sometimes would rather avoid.  However, I have done many injections in my abdomen at work and in the local coffee shops, and no one has noticed.  On the plus side (I think?), my friends are eager to puncture my skin with a needle whenever they can have the chance; so far, I trust my mediocre injection skills over theirs.

Do’s of Shots:

  • Consult your doctor(s).  Consult the diabetic online community.  Weigh your options.  Take action if you are ready to try something new.
  • Write down all your pump information, such as basal rates and carb ratios, so that you have it handy if needed in the future.
  • Tell someone what you are doing.  Transitioning from the pump to shots after many years of pumping is scary and it is an educated-guessing-game under the guidance of medical professionals, as most diabetes-related things are.  During this time, there is a slightly-elevated risk that something out of the ordinary may happen, such as a severe low blood sugar due to an inadvertent insulin dosing mishap.  I emailed a few friends at work one day when I was not feeling well, on the off chance that an emergency did occur; I told them the name of my diabetes clinic and some basic information about my transition back to shots, on the very rare chance that I may not be able to articulate these facts myself to an emergency responder if a bad situation occurred.
  • This is another reason to have proper medical identification.  You can read more about this under disclaimers and disclosures, but MedicAlert has served me well for over twenty years.  I feel comfort in knowing that my medical and contact information is stored in their database, and that if I were ever unconscious an emergency responder would know that I was type one diabetic simply by reading the back of a MedicAlert medical identification bracelet that I wear at all times.
  • Restock on supplies: glucose tabs for the car, juice at the office, etc.
  • Understand that you may require more insulin in your boluses than you currently do on the pump.  My correction factors and insulin to carb ratios have changed significantly as we iron out the Lantus details.

Don’ts of Shots:

  • I do not regret trying shots.  My doctors and I were ready to do this in this moment.  In hindsight, however, I picked a rather difficult first week to test out multiple daily injections again.  Guys: You’ve been warned.  The next few sentences discuss female stuff.  #sorryimnotsorry 
  • A few days prior to the beginning of my cycle, my hormones seem to have an epic party where they are up all night chugging Red Bull and taking vodka shots within my body.  My blood glucose refuses to budge from its perch high atop the elevated blood sugar peak, despite increased insulin doses which are sometimes quadruple my normal amounts.
  • Dealing with this frustration on top of re-learning shots, as well as having planned a purposely-conservative Lantus dosage with my endocrinologist for the first few days just to be safe, created a high blood glucose dilemma for us.  I was stuck in the 300s and 350s for days on end, and was more or less feeling miserable.  Once the hormone block party subsided, things evened out a bit and I began to feel much better.  So, for the ladies, I would recommend planning around the week of your cycle if you are interested in transitioning back to shots anytime soon.
  • Don’t switch back to shots solely because you do not want to be attached to a medical device at all times.  To be honest, I have not felt an overwhelming sense of “freedom” being without the pump; in fact, I miss it for its good aspects quite a lot.  It was cool for like, a day, to have one less site to worry about while showering, but all in all, this should not make or break your insulin management decision.
  • Don’t throw in the towel quickly.  I’ll admit, I was ready to do so based on the first few days of non-stop highs.  I verbally committed while on the phone with my doctor to try for a week, and then I tweeted it out to make sure I held myself to that goal.  On the first week of the trial, the stubborn Italian part of me was not going to give up until Saturday, which would mark the full seven days of shots.  On Thursday, I emailed another doctor and asked the question that I wasn’t answering for myself: “So, I should try this shots thing for more than a week?”  She encouraged me to continue with the shots.
  • I was looking for her affirmation and for someone else to make the tough call, and I am happy now that she gave me the tough answer.  It was a difficult first week, but by the second week it was infinitely better.  Now on the third week, we still have things to tweak and my blood sugars are far from stellar, but I do feel better and there is insulin getting into my body.
  • The back to the basics, simple things about insulin are now appreciated more than ever.  I take a shot and I watch insulin do its thing.  In that regard, I am truly blessed to have access to this life-sustaining medication and to doctors who can tell me how best to use it.

X’s and O’s:

Consider this a big virtual hug to each of you for being my sounding board during a trying time in my diabetes journey.  Knowing that someone out there was reading this and perhaps going through a similar trial, receiving innovative suggestions to insulin management, perusing your blogs and tweets, and overall feeling the strong sense of community is what made the hardest part – taking the first step, or, in this case, the first shot – totally worth it.

My long-term plan is to continue this shots trial for another month or so and then perhaps switch back to the pump with reduced pump basal rates and some background injected Lantus basal as a precaution for faulty-pump-site days.

I feel blessed to have made so many friends in the diabetic online community and to have a health care team that has steadfastly worked to make me feel better.  One day many months ago, when my head spun from ketones-induced nausea after another failed pump site, I thought to myself, Maybe I should start a blog?  There must be someone out there who “gets it,” too?  Today, having been encouraged to fight for my health through the inspiration of the #doc, I lift my very light, no sugar coffee cup to you.

Thank you…

XOXO,

Ally

Housekeeping

002Sure T Insulin at Connector Site002

Before I publish a lengthy manifesto on the pros and cons of insulin pumping versus injections in regards to my recent switch over to shots, there are a few long overdue housekeeping details that I would like to highlight for those interested.

1.)  Meeting of the Diabetes Minds

Around Halloween, I had a big appointment with an insulin pump representative and my nurse.  My doctor also sat in during her lunch break.  I know that it was around Halloween because I brought a bag full of insulin pump supplies as well as Halloween cupcakes coated in frosting (see above) as sustenance for those who were kindhearted enough to meet with me on their free time.  So, it was a meeting of the multifaceted diabetes minds, fueled by large amounts of sugar for those with properly-functioning pancreases.

We went through every scenario, including a live insulin pump site change.  They all nodded their heads in agreement when I showed them how Humalog bubbled up quickly in the reservoir.  We were all baffled as to why the Sure T infusion sets continued to pool insulin at the connector site.  And so on.  Basically, we knew there were problems, and we had to try to tackle them each individually.

2.)  Sure T infusion sets

Regarding the Sure T, I have said it before and I will continue to say it: I like Medtronic.  Their pump rep nurses were as gentle as possible when we did the “human pincushion” trial and error game of inserting into different sites during appointments over the past two years.  Those days were not easy for any of us, on a mental and physical level, but their confident reassurance that it was going to be okay is something that I will always carry with me.  Medtronic’s customer service is timely, polite, and helpful.  One manager in particular has logged dozens of hours on the phone with me while we documented and troubleshooted what we believe to be a rare Sure T product defect.  Medtronic has sent me various lot numbers of Sure Ts to try, and I have sent them back my problematic sets for analyses, the results of which are still to be determined.

In a nutshell, we have tried repeatedly to make the Sure T work for me, but maybe the Sure T doesn’t like people with very light, no sugar coffee orders.  Sure T might perform better for a different diabetic coffee enthusiast on a different day.  You tell me.

The recent product warning sent out by Medtronic is believed to be unrelated to my issue.  See image above; note that insulin droplets pool at the connector site and do not get into my body.  The proof is in the sugar-free pudding: after many site changes, subsequent ketone spikes, stubborn high blood sugars, and droplets of insulin falling out at the site, we have decided to hold off on using the Sure T until new lots are manufactured in the future.  Although I like the steel needle aspect of the Sure T, as bent cannulas cannot occur, if/when I transition back to the insulin pump after doing multiple daily injections for awhile, I will most likely give the Medtronic Quick Sets another try.

Whenever I switched a Sure T site out, I always ate low-carb for a few hours afterwards in case the insulin was not getting into me.  My fear is that someone who is unaware of this risk might consume a big pasta dinner and have an infusion set failure unbeknownst to that person, leading to a very dangerous situation very quickly.  I disclose this information so that you are at least aware of this potential problem if you also use Sure Ts.

Note: If you experience any insulin pump problems, please contact your respective pump company so that they can document the issue and investigate safely.

3.)  Bubbles in insulin pump reservoirs

I detailed this extensively in Broken Record, but to summarize briefly: These were more than champagne bubbles, they blocked proper insulin delivery, and they caused blood sugar to stagnate at high levels until the problem was identified and the reservoir changed out.

A Facebook user recommended that I pre-fill a reservoir a day before an expected site change, let it sit undisturbed to allow big bubbles to settle, and then prime those bubbles through the tubing on the day of the site change.  For some reason, letting the reservoir sit for a day helped immensely.  I also found that Novolog produced bigger bubbles which were easier to eradicate than Humalog’s millions of feisty bubbles which had a knack for procreating over time.  Get a room, Humalog love birds!

Please note that this trick is not recommended by pump companies, as insulin has been shown to lose efficacy over time in the plastic reservoirs.  However, given the frequency and degree of problems I encountered with pump site changes, I found that pre-filling the reservoir was a risk I was willing to assume, and I was always cognizant and on the look-out for problems related to this risk.  So far, the benefits have outweighed these risks.

I hope that this update is helpful to anyone who was curious about the possible solutions identified for my insulin pumping problems.  Thank you again to all who offered encouragement and advice along the way.  More to come soon with a post chronicling the transition back to insulin shots.  Yeehaw!