Our Lives, Quantified: My Adventures at Stanford Medicine X

This is the second of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Much of my first day at Stanford MedicineX left me feeling like I didn't belong there. I wasn't an innovator, or a CEO of anything (except, perhaps, CEO of my type 2 diabetes), and I wasn't quite sure what my voice was going to be at this conference. I wasn't even close friends with any of the other diabetes advocates who were attending. I felt, well, maybe I was a bit bold in having applied for this conference. But by the time our orientation dinner came around, I became a bit more confident in myself.

Carb centered food everywhere.
How apropos. 

Dinner was had at the quirky, randomly decorated Buca di Bepo restaurant (where you have to cut through the kitchen to get to the dining room), and there I found some comfort. Many health advocates of all walks of life, with all sorts of conditions, all in my same spot. Some with a few more dollars than I, some with fancy positions; some with just their blog. All just like me. People, passionately believing in raising patient awareness, having a friendly dinner and conversations of where they'd been on their various health journeys.

Things were going to be alright. I could do this, I thought. The twitter voices of the many I had met, now echoed into my reality. The voices of those surviving and thriving with breast cancer, rare diseases, heart conditions, liver transplants, rheumatoid arthritis, asthma, Crohn's disease, and of course... diabetes, among many others. Stanford's Med X was going to be patient centered, and we were going to take front row seats into a whirlwind of personal stories, and imaginative ways in which silicon valley wants to make an impact.

Day 1: The Self Tracking Symposium

"The best way to anticipate the future is to fully understand the present ...  the best way to design useful tools is to notice and respect what people are already juggling in their lives." -- Susannah Fox, Pew Internet & American Life Project, on the future of self tracking.

Pretty sure this app's not
going to help anyone, though.

I'm no stranger to self tracking. There's self tracking everywhere. Track your weight, track your heart rate during exercise, track your laps, track your steps, track your BMI, track your waist circumference, track your period, track your basal temp, track your anything, and everything. There are even many apps and things out there to help patients track these things, as well as their glucose levels, or their insulin and medication usage. MedX discussed several of those apps during various startup and innovation segments. Those can be useful, in their own level... and some will be so revolutionary, that they will no doubt, forever change the ease of use of many of our medical services, and ideally, save us a lot of money as a whole (patient, industry, nation, etc.)

But what I wasn't aware of... was that the science community was on to us. On to us patients who actually self track for something more meaningful than this. Some of us patients self track because we are our OWN science experiments... because clinicians have stopped paying attention to us, or acknowledging our conditions. Because we need meaningful ways to learn, and track patterns, and self adjust for the daily grind of managing cumbersome chronic health conditions. Because those things are never found in textbooks, and are seldom ever discussed by medical professionals. Yes, some of us self track because we want to live another day, month, year, or decade... and because we want to be heard by our medical team -- and we need a voice, and we need ammunition. We need co-operation. We need acknowledgement. Sometimes, we may even need a diagnosis.


So, meet Allan Bailey. Allan Bailey is one of the self trackers. One of us. There were other self trackers, with very impressive stories to be told... but Allan Bailey has been living with type 2 diabetes for the last 27 years (onset at age 18), so I find myself a bit biased to bring him up. Allan is one who seriously took matters into his own hands... and paid for it big time. Yes, and he paid for it to the tune of around $2K. You see, Allan got pretty tired of being given the runaround as to why his blood sugars were always so all over the place... he was told his control was 'okay' and kept being treated by conventional medical standards, but Allan was not satisfied. Allan was already living with heart complications, and four stents in one vein. So... Allan bought himself a CGMs (a continuous glucose monitoring system), to really help him learn why his blood sugars were all over the place. I'm really not sure how he managed to arm wrestle his clinician into prescribing him this device, but Allan had to pay for it out of pocket, in full. Of course, it didn't take long for him to see who the real culprits in raising his blood glucose were: breads, grains, etc. Carbs. Allan never imagined that his CGM would turn into this instantaneous feedback loop for what he ate, nor that it would turn into a behavior modification device that would lead him to euglycemia, and weight loss. Doctors never care for prescribing CGMs to persons with type 2 diabetes -- usually only to those living with type 1 diabetes, particularly because it has alarm systems to help deal with potentially dangerous low blood sugar levels, and because of how costly it is. (Nevermind that the cost of complications from uncontrolled diabetes far outweighs a $2K device, and it's supplies.) Allan now has an A1c of 5.1%, has greatly improved his health, and reduced his medications.

Now, as wonderful, encouraging, and brave as Allan's story is... it makes me angry. Very angry. Can you imagine why? Wait for it...

WHY THE HELL WOULD A MEDICAL TEAM NOT EXPLAIN TO THEIR PATIENT THAT THE BIGGEST REASON OUR GLUCOSE LEVELS RISE IS BECAUSE OF OUR CARBOHYDRATE CONSUMPTION??????????? WHY DOES SOMEONE NEED TO SPEND THOUSANDS OF DOLLARS OF THEIR OWN HARD EARNED MONEY TO FIGURE OUT THAT BREAD AND GRAINS, AND PASTA ARE LIKE POTENTIAL KRYPTONITE TO A DIABETIC? WHYYYYYYYYYYYY????????? HADN'T ANYONE EVER HEARD OF COUNTING CARBOHYDRATES, AND MEASURING PRE AND POST PRANDIAL RESPONSE? YOU CAN DO THAT, AND PLOT YOUR OWN BELL CURVE WITHOUT THE NEED OF A FANCY $2K DEVICE!

This, of course... is not Allan's fault in any way. Allan was a creative person, and did what he HAD to do... and is now very healthy for it. All the power to him.

My story could have well been Allan's. Except that I ate food, noted what I ate, tested every 30 minutes, spent a heck of a lot of money on test strips (even discounted ones) as well as relying on the kindness of strangers for them, and quantified this information on a spreadsheet. It didn't take long for me to bring a 10.5% A1c to 5.3%, and it has remained below 6% ever since my diagnosis. But, like Allan, I was given a big runaround for a while... When I was diagnosed, my clinician initially refused to accept I had diabetes of any kind, even though I had such a high A1c and had multiple fasting blood glucose tests well above 200 mg/dL. And when she did concede I had a problem, she merely said "I'll google the ADA website, and tell you what you need to do." HECK, I CAN DO THAT, MYSELF! Why was I wasting my precious time in her office, for that?!?

I'd love to have a CGMs, because who doesn't love to see instant graphs and things... and I am SURE that it helps a lot with compliance (and yes, it probably adds to guilt, too, when we fail.) But it's sad that persons with type 2 diabetes routinely get denied useful, powerful, quantitative technology... and this denial is not limited to the CGMs. Many patients are denied an adequate numbers of testing strips, or even a meter at all! But what good would these tools do a person with type 2 diabetes if what they are denied is the most important thing of all... KNOWLEDGE?

. . . 

At the previous dinner, when meeting several of the other "ePatients" attending Medicine X, I had a few, sort of incredulous questions as to the state of type 2 diabetes care... and the adequacy of that care, and education for the patient. What about the ADA, I was asked? Yes... what about it? In the words of Amy Tendrich, "Patient advocacy groups are not really patient advocacy groups."

I really hope that Allan's story was able to bring even a snippet of acknowledgement into our reality as persons with type 2 diabetes, the reality and importance of self tracking, and the need for patient inspired/centered care and technology. I know that I was FLOORED to see a different take on the usual 'just diet and exercise' testimony.

Guest Blog Post: A Diabetes Service Dog for Sarah

Here at the Angry Type 2 Diabetic, we see 'ourselves' as a voice to ALL persons with diabetes... So, even though we generally use this space to share about our own type 2 diabetic experiences, we'd like to cheerfully lend the spotlight, this week, to our friend, Michelle. Michelle is a wonderful mom to a type 1 diabetic child, and she has a very important message to share with ALL of you. You may find Michelle's regular blogging space at The Tightrope Tango, and show her some follow love.  

My name is Michelle, and first I want to thank my good friend Lizmari for lending me space on her awesome blog. Lizmari is an awesome advocate for all people living with diabetes, regardless of type. She’s also the reason we enjoyed some pretty awesome Ice Cream Sundae’s last August.

Most people I talk to (and I talk quite a lot these days) have never heard of a diabetes alert dog. We all know about Guide Dogs for the Blind, and most of us have heard of dogs to assist people with other disabilities such as mobility, seizures, hearing, etc. Diabetes alert dogs are specially trained dogs that focus on the scent of their person, and let that person know when their blood sugar begins to drop to an unsafe level. These dogs are most commonly used by people with type 1 diabetes, but some with type 2 diabetes are also using diabetes alert dogs to keep them safe.

Why is this necessary? Well, a lot of diabetics either never have, or lose the ability over time to sense changes in blood sugar. My daughter, Sarah, is 12. She’s had type 1 diabetes for about two and a half years. Since the beginning she’s had trouble recognizing when her blood sugar is low, until it is dangerously low (sometimes in the 40’s and 50’s mg/dL). Normal blood sugar (for a non-diabetic) ranges from around 70mg/dL to 130mg/dL. If blood sugar drops too low, unconsciousness, seizures, and death can occur. Sarah has difficulty feeling drops in her blood sugar during the day, but she does not feel them at night, period. Since she’s been diagnosed, she has never… not once… woken because she felt a low blood sugar. That is scary. The JDRF (Juvenile Diabetes Research Foundation) reports that 1 in 20 people with type 1 diabetes will DIE of a low blood sugar. 1 in 20! That's not a typo. It's not 1 in 20,000, it's 1 in 20. (http://www.jdrftalk.org/2011/11/07/percentage-people-type1-diabetes-die-low-blood-sugar-hypoglycemia/). I can’t let my beautiful child become a statistic, so right now I set alarms for 10:30, 11:30, and 2am. Sometimes more, sometimes less, depending on her food and activity for the previous day.

But I’m not perfect, and I make mistakes.

Once, last December, she went extremely low (27mg/dL). She was unresponsive. It was only around midnight and I only caught the low because I checked on her and found that she was horribly pale and covered in sweat. I saved her life that night, because she was still dropping and the body can't sustain a blood sugar much lower than that for very long. If I hadn't checked on her, she very easily could have slipped into a coma and been gone by morning.

We tried a CGM (continuous glucose monitor) but Sarah has a metal allergy and gets a severe rash. This is where the diabetes alert dog comes in. Diabetes alert dogs are not for everyone. They require a lot of care. They eat a lot, they poop a lot. Honestly, in the beginning I thought that a diabetes alert dog was too much responsibility for a child. But my child proved me wrong by volunteering many hours every month with Guide Dogs for the Blind. She learned to handle, groom, and correct them. She grew to love her new friends, and has taken weekend responsibility for a Guide Dog puppy on a number of occasions. 

I believe that in a few years, maybe 5, maybe 20, that diabetes alert dogs will be much more common and understood. Discounting the fact that an alert dog is a living animal, an alert dog is a medical device, a tool. An alert dog is always on watch with their wonderful nose. An alert dog can think, and will go find help if their charge doesn’t respond to their warnings. Guide Dogs call it intelligent disobedience, a term that describes when a dog makes a decision to take an action outside its normal training that is in the best interest of their person. This could be a dog that leaves Sarah’s side during school to go take the alert to the teacher or other adult. This could be leaving Sarah’s room during the night to come into my room and let me know that Sarah needs help.

The last thing I’d like to say to everyone who reads this is to not discount the needs of someone with diabetes simply because they don’t have an obvious disability. Many kids, like my Sarah, are active, funny, enthusiastic, and because their health, food and activity is watched very closely, they often appear healthier than the average child their age. I’ve had a few eyerolls when I’ve told people that my bouncy child, who just exudes health and vitality, needs a service dog to keep her safe. For someone with type 1 diabetes, safe and healthy require a lot of work, lots of acting on instinct, guesswork, etc. It’s not as easy as it looks, and even with constant effort we have lows and highs that could not have been predicted. Diabetes is always. It never stops. It never goes away or gives us a break. Sarah takes large doses of insulin 4-6 times a day. Any one of those could send her to a fatal low if she or I misjudge the carbohydrates in her food or misjudge how her activity will affect her.

Can you be 100% right ALL the time?

At this time, diabetes alert dogs are not covered by insurance. Those of us who have made this choice for our child must generally pay for the cost of training the dog. My hope is that once the abilities of these dogs are more fully understood and accepted, more groups like Guide Dogs for the Blind can be formed to raise funds and provide these amazing dogs at low or no charge to the family. The first step in making this a reality is education. Tell someone you know about these dogs, and help spread the word. Even if you don’t know someone with diabetes, someone you know does.

Talk. Educate. Your words can help save someone’s life.

If you’d like to learn more about Sarah’s journey to a diabetes alert service dog, please visit either her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com. Sarah’s dog is coming from Canine Hope for Diabetics in Riverside, CA, hopefully in early 2013.