Type 1 Tightrope

Speaking the language

This was the first thing I posted about on this blog. I think it is critically important. The article I posted was about using person first language that emphasizes a person before their disease. It emphasizes using stigma free, strengths based, and language that fosters collaboration between patients and providers.

Coming back from diabetes camp has been challenging. Being back in an environment where these guidelines from the ADA are not followed is dehumanizing as a person with diabetes. I attached a video here to summarize that article and why it’s important. Here is Maureen McGrath, a nurse practitioner who has had type 1 for 42 years and has been providing clinical care for 20 years to children with diabetes.

It’s time for a language shift, it doesn’t take longer to call me a person with diabetes rather than diabetic. It does take effort to break a habit but on behalf of myself and all the kids I have the honor of working with, please try.

https://vimeo.com/262115012/0bea8164f7

MINIGLUCAGON!

I discovered mini-glucagon or mini-gluc as med staff at DYF Bearskin camp a few years ago. As a kid who lost her low blood sugar awareness early and ended up needing glucagon on more than a few occasions, this, like diabetes camp, was another thing that I wish I had known about earlier.

First, to refresh, glucagon is a hormone that acts as the counterpoint to insulin. Insulin takes sugar out of the blood stream and puts it into our body. Glucagon takes glycogen stored in the liver and releases it as sugar into the bloodstream. When for whatever reasons, our blood sugars are low and we can’t take sugar by mouth, glucagon gets the sugar we need into our bloodstream without it.

Glucagon is traditionally administered as an intramuscular (IM) injection, the dose is either 1mg or 0.5mg. The needle is enormous and terrifying to everyone involved and because it’s an IM injection, it hurts. I am unclear why this method stuck because: 1. The dose of .5mg is way higher than necessary for children and adults and causes unnecessary side effects. 2. IM and subcutaneous injections are absorbed at the same rate.

This is why many people have adopted mini-glucagon as the preferred method of administration. Here’s an outline:

Mix the saline and glucagon powder in the vial as you normally would. Swirl, don’t shake, until all the powder is dissolved in solution
Take an insulin syringe which you more than likely still have from early diabetes days. The dosage is 1 unit per year of age your child is. If your child is <2, give 2 units. Otherwise give 3 if your child is 3 up to 15 units if your child is 15. After 15, the dose stays exactly the same, 15 units.
Give as a subcutaneous injection, the exact way you would give an insulin injection. Pull up a small amount of fatty tissue and inject.
Blood sugar should rapidly and reliably rise.

One of primary side effects of glucagon is hyperglycemia, lower doses make this better. Other common side effects are nausea, vomiting and the worlds worst head ache. I call it the glucagon hangover and it is rough. Again, the lower dose reduces these side effects.

Needing to give glucagon is a terrifying event for any parent and if this adds another layer of panic, ignore it. If EMTs are involved they will happily ignore you, IM glucagon works just fine and will do the trick.

Finally, if you ever have a night, or day for that matter, when it seems like no matter what you do, you can’t get a blood sugar up no matter the quantity of sugar you force your child to eat or drink- try a mini-glucagon. Especially if it’s the middle of the night. As camp medical staff I got a taste of being on the other side of lows that won’t come up and I can’t tell you how overjoyed I was to discover mini-glucagon in those cases. It hasn’t failed at camp yet, I use them myself, I find otherwise they all end up expiring when they can be helpful even if you don’t have an emergency.

NOTE: GLUCAGON, once mixed into solution, EXPIRES AFTER 27 hours. So sadly you have to waste the rest of the solution in most cases.

type 1 diabetes t1diabetes

Células madres (stem cells, I like the spanish translation more)

Remember that month or two ago when I said I wasn’t hopeful about cure research? Perhaps I spoke too soon. The lab of Matthias Hebrok at UCSF specializes in stem cell research. They have figured out how to better create insulin producing and glucose sensitive Beta-cells from stem cells. The article was published in the journal Nature February 2019, volume 21 and is titled “Recapitulating endocrine cell clustering in culture promotes maturation of human stem-cell-derived Beta cells” in case you’re interested. If you dig around you can find a full and free article.

The main difference assessed between the cells they were able to produce and prior beta cell models was the presence of scaffolding that allowed the cells to mature more fully. The consequences of this maturation were significant. The highlights as I see them are below:

They definitively prove that the issue of clustering the endocrine cells leads to more fully matured cells or what they call in the article enhanced beta cells or eBCs. They prove this on a number of levels: through testing glucose sensitivity, I.e: these cells produce insulin at high glucose concentrations and stop at low levels. The also prove this by looking at genetic markers of mature beta cells. The genetic markers of mature cells are present in the eBCs. There are also smaller amounts of so called “disallowed genes” that interfere with cells ability to produce/decrease insulin in response to glucose levels. Cheers to the Aggrewells-400s they used to create happy little beta cell houses.
The eBC cells are functional after transplantation within 3 days! Up to now the beta cells formed from stem cells have required 2-6 weeks following transplantation to become functional. These are far more functional in insulin production and faster than all other man-made beta cells. Boom!
When tested in mice with diabetes induced by treatment with STZ (streptozotocin) the eBC stem cell grafts were able to keep the mice blood sugars under control. The blood sugars of the group of mice without the grafts unsurprisingly, went super high.
The grafts were happy and healthy in the mice bodies after 8 months. Up to now beta stem cell grafts have turned into messy disorganized blobs after just 3 months. The eBCs more closely resemble functional Beta cell tissue.
So the eBC grafts are better, faster acting and lasting than all others to date in an in-vivo model.
That is GD exciting.

Some things I’m concerned about

The potential of growing cancerous tumors instead of beta cells d/t incomplete filtering of cells. Stem cells, due to their very magical nature can turn into all sorts of things. The stakes are then raised when these cells are filtered for a very specific purpose. That filtering better be GOOOOOOD.
When will this get approved, especially in the US? The only current FDA approved use of stem cells are hematopoietic progenitor cells to treat certain cancers and blood disorders. These cells have been studied for therapy for roughly 50 years. As much hype there has been around stem cells, as therapy, it’s still in early stages. The article discussed an 8 month study of efficacy but we’ll need more than that, in more than mice for clinical trials to begin. Which is just step one of the process. Given the cost of type 1 in the United States it could possibly be moved along faster.
In the article they discuss the 2 phases of insulin production. The first being the immediate insulin release directly from beta cell stores that happens when we eat. Apparently eBCs produce lower levels of insulin than adult beta cells. The second phase of insulin delivery in eBCs is also not sustained. Reading the article I was unclear if this was a good or bad thing but I imagine that the second release is also important for blood sugar regulation. These glitches I’m less worried about than the former two but it does give me some pause. Though I guess beta cells on the struggle bus are better than what I’ve currently got going on.

So that’s my summary but check it out for yourself!

https://www.nature.com/articles/s41556-018-0271-4

I take some joy in the fact that just like you can’t manage diabetes on your own, Beta cells can’t get where they’re going without being clustered together and snuggling. Cheers to getting support, holding on to hope and giving the deuces to T1d!

Also, cheers to all these people who hang out long lonely hours in a lab to figure things out and babysit fussy cells and make magic like this happen. Specially the middle authors cause we know you did most of the grunt work:

Gopika G. Nair, Jennifer S. Liu, Holger A. Russ, Stella Tran, Michael S. Saxton, Richard Chen, Charity Juang, Mei-lan Li, Vinh Q. Nguyen, Simone Giacometti, Sapna Puri, Yuan Xing, Yong Wang, Gregory L. Szot, Jose Oberholzer, Anil Bhushan & Matthias Hebrok

References: Nair, G., et al. Recapitulating endocrine cell clustering in culture promotes maturation of human stem-cell-derived Beta cells. Nature, Cell Biology 21, 263-274 (2019).

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Newly diagnosed

First, remember that puppies exist in the world and are amazing!! And then…

Take a deep breath. You are okay. Your child is okay.
There is a lot of information on the internet. Some of it is lovely, some of it is garbage. Don’t get sucked into rabbit holes, run it by your diabetes provider and remember that what was once true for diabetes is very different now.
Please I beg of you, do not restrict your children’s food. Fast acting sugars like juice, soda, simple sugar candy(skittles, starbursts, sour patch, sweet tarts, etc) should be avoided except when correcting lows. Otherwise, do not restrict, it causes more problems down the road than having a general healthy diet for the family and counting carbs carefully. Your child should eat what everyone else eats. There is a reason that people with type 1 are more likely to suffer from eating disorders. Restriction doesn’t help this.
Take deep breaths when you encounter people who think they know what diabetes is and what your children should eat. It’s the worst and it is something you and your child will deal with forever. Educate if you want to, run away if you don’t, that’s not your job.
More deep breaths. Know that there is solid, published and repeatedly proven evidence that with effort, your child will live a long healthy life. Complete with you eventually being able to feel comfortable leaving your child on their own in college or at work and babies if they want them. And all the good things in life.
There are very few careers off limits for people with diabetes. One of them is a commercial airline pilot and I hope that will eventually change. There are branches of the military you can’t join, you can’t be a special agent in the FBI. Basically if you could possibly pose an “imminent threat” as a result of your diabetes, companies can legally discriminate (SIGHHHHHH). Otherwise the world is your oyster.
All of the focus is likely on your child and that is to be expected. Please also remember that this is devastating for more than your kid. Take time for yourself. Grieve. Get rid of any guilt you’ve got cause without a doubt this is not your fault. More importantly, guilt can cripple people from making hard but critical decisions.
Speaking of those hard decisions; your child, will at some point, get burned out and stop taking care of themselves in healthy ways. It is at these points that it is critical that you step in and support. Sometimes that support is saying: I need to know you’re safe, you must show me you can check BG 4 times a day in order to go out with friends. This is not mean, this is for their health and safety and they may hate you for it now but they will value it later (I speak from experience on this one). Sometimes support looks like giving them a diabetes vacation where you physically grab their fingers and check their BG, count their carbs and dose their insulin and try and hold onto as much of the weight of diabetes as you possibly can.
Remember that you are AMAZING, and so are your little champions managing this with you. Remember to acknowledge your effort and theirs, even if it’s not “perfect,” it’s still an incredible feat to walk around the world with T1d and act like it’s no big deal.
More breathing

Josh Tree as metaphor

I was in Joshua Tree over New Years with some of my favorite people. It was unlike any other place I’ve been. I’ve seen desert in Arizona but this was nothing like it. I couldn’t figure out what I liked so much about it but it just felt good to be there, it was so alien, it made everyday life feel very far away. As we were hiking around one day I noticed a plant growing on a rock. I couldn’t see topsoil, just a pretty flower growing out of a rock. And it hit me. I am the flower!! Technically, by laws of biology I should not be alive. If I grew up before 1920 I would not be. My great grandfather died on a vacation after his doctor told him about this new oral insulin he could take so he left his insulin bottles at home. Turned out the doctor was wrong! My husband hates when I talk like this because what does that mean? What does it matter? And I don’t know, maybe it doesn’t and maybe there’s no connection between a desert plant growing on a rock and my experience with diabetes but sometimes it does feel like living on a rock. But making something beautiful out of it. Collecting all the information, wisdom, support and shelter I can and making a go of it. Living with diabetes is so hard, its a constant and frustrating battle but if we have the support, it’s a battle we can win. I believe in that with every piece of me. I hope that my patients can feel my hope even when they’re tapped out. It’s an injustice to be a 9 year old kid and have to come to terms with your mortality. And sure, there is a gift in that because you look at things differently when you can’t take them for granted. Differently and more closely. But it also just sucks and we’re a bunch of heroes for making flowers out of it.

type 1 diabetes

Resiliency and Type 1 Diabetes

Before starting nursing school, I worked at UCSF as a clinical researcher. I got to lead a group of Type 1 teenagers through a group of cognitive behavioral therapy sessions where we discussed, among other things, something called the ABC model. A stood for Event. This can be anything, such as: I test my blood sugar and it is 364. B stood for Belief, for example: I am an idiot, I always forget to give insulin before lunch. C stands for consequences of those beliefs: Disengage from my self care, lose faith in my ability to mange diabetes effectively, stop trying. The aim of the sessions was to demonstrate that how we think about the things that happen to us has a tremendous impact on our actions AND we can change how we think about the things that happen to us with practice.

I loved these groups, we got to talk about all of the things that are obnoxious about diabetes: when your sites fall out, when you squirt blood from your infusion site when you take it out, how everyone has an opinion about what you can and can’t eat, how parents can sometimes only seem to care about diabetes, and not you, etc. And we got to walk through that internal monologue that we all have but rarely think about. There were always stumbling blocks, such as the fact that a lot of people don’t think their beliefs can be changed (untrue, we all have patterns and we can change them), the misconception that we were trying to create sunshine out of garbage (also not true, the value in assessing our beliefs is only to determine their validity) and the simple fact that it takes work and teenagers are burned out as it is. But I liked to believe that there was some impact there, there was maybe value in talking through these ideas, at opening up someones mind to the fact that yeah, sometimes your blood sugar is 364 and sometimes it’s true that you did mess something up. But that doesn’t make you an idiot, just a human. My blood sugar is high because I forgot to give insulin before lunch has different implications than my blood sugar is high because I’m an idiot. You can’t always control high blood sugars, but you can control how you think about those blood sugars.

The results from our first group of kids were finally published and it looks like the intervention was successful. That kids who were in our group versus the control group had reduced diabetes distress, increased glycemic control, increased resilience and decreased depressive symptoms at one year out from when they participated. And that feels pretty amazing to me. I’m still a little bummed that all the kids who participated weren’t able to be in the intervention group but I salute to science.

May our automatic thoughts when bad things happen be gradually more accurate, cause it makes a difference.

type 1 diabetes penn resiliency program

The artificial pancreas dream

Having diabetes for 23 years can make you pretty cynical. I feel that since diagnosis a cure was “just around the corner!” “certainly in your lifetime!” “just wait!” As an adult I thought I might want to go into cure research rather than clinical work. So I visited labs at UCSF working on the cutting edge of immunology and genetics, unraveling all the pieces of how our bodies get confused and start the warpath towards beta cell destruction. It’s beautiful work, often lonely, and mostly thankless. And while I believe in that work and am so thankful that smart people are out there doing it, I’ve tempered my excitement about it. It helped to sit down with people in those labs and have them plainly state the hurdles and have one particularly lovely principal investigator tell me “science works at it’s own pace, while it’s possible that this will happen in the next twenty years, the greater probability is that it won’t.” They’re having better luck with delaying the progression of type 1 once the cascade starts. That is awesome, but it doesn’t help people like me.

So while I love science, it’s not where my hope is currently placed for diabetes miracles. I’m more hopeful about the artificial pancreas. I was tempering my excitement about that device until I found out there was a glucagon stable for more than 24 hours. My opinion is that insulin dosing can’t be as aggressive enough to keep post-prandial blood sugars down without having the counter-regulatory hormone glucagon in the mix. Up until recently (September 2018) the only liquid soluble form of glucagon was degraded within 24 hours, so you would have to trade out your site and cartridge every day and that’s prohibits everyday wear. And then dasiglucagon came around, hooray! They messed with the structure of glucagon to not alter it’s efficacy and also make it more stable. Because it’s an analog and not something our bodies normally make there are concerns that long term use of it may be dangerous but it’s in phase 3 testing with children right now and it’s been shown to be safe and effective in adults in the short term. Also, there have been studies done with dogs that demonstrate it’s long term safety. But those are dogs…Another hitch in the magic is FDA approval, it is likely that countries without the United States’ regulation body will get approval for public use of this a lot faster than we will in the states but whatever, it’s still exciting.

There are about five companies that are working on the bi-hormonal artificial pancreas. The one that’s most accessible, i.e. they have a decent website, is something called the iLet, a device made by the company Beta Bionics. Their website: https://www.betabionics.com/ describes the device with lots of high fiving themselves and flat blood sugar graphs. It’s exciting, I doubt this will hit the market while I’m alive due to FDA regulations (new drug, new device) but maybe. Things are happening.

Another doubt, because I can’t stop myself from finding reasons to not get excited, is with sensors. The Dexcom G6 is great, don’t get me wrong, and the guardian sensor is SO MUCH BETTER THAN the old Medtronic harpoons, but they’re flawed. Especially when BG are moving quickly, which is exactly when we need insulin/glucagon. I wonder when someone will come up with a sensor that reads blood instead of interstitial fluid. Until then I worry that these devices may work well sometimes but possibly be way off target when the sensor fails or is simply 50 points away from what my blood sugar is. When the machine is making decisions on it’s own, I need to have more confidence than I currently do with sensors.

This was supposed to be a hooray! Look at what is coming, uplifting sort of post. I think I blew it…I will do better next time

type1diabetes betabionics dasiglucagon

Things I wish I could go back and tell baby Sarah

1. Blood sugars are just numbers. They are data. Information. Pieces of a puzzle that help you make decisions. They are not a character assessment. They are not your value as a person. Wanna know why your blood sugars are high? Cause you have diabetes and that’s just part of the game.

2. Diabetes is hard work and you are amazing for dealing with it. Everyday, without a break. Even when you’re being a kid and not checking and not covering all your snacks. You’re still thinking about it, and carrying it around, and nobody gives you any credit for it. And you deserve it. All the time.

3. Give your mom a break. She’s annoying cause she loves you so much.

4. You need support. As much of it as you can get. You are NOT a burden to ANYONE. People want to support you and better understand what your life with diabetes looks like. Allow them to say hey! Can I count your carbs for you this meal? Can I deliver your bolus? Can I check you blood sugar? Can I grab you juice when you’re low? Will you tell me what you look like when you’re low? What about high? Encourage people around you to ask: “How can I help you?” and think about ways for them to do that.

5. Get a therapist so you can talk through all the rage you have around being diagnosed with diabetes and having your childhood taken away. The earlier you can assess that rage and get control over it the better you will be able to handle the day in and day out management of diabetes.

6. Go to Bearskin Meadows Camp. A place where everyone gets your life so you actually feel seen. Where having diabetes makes you cooler and you get to feel less alone.

7. Never forget that you are an amazing hero who deals with so much garbage that people never have to consider and you act like it’s nothing. And it’s not nothing. No credit, no cape, but you are a hero. Don’t forget that.

8. When people talk to you about complications to try and scare you into taking care of yourself I want you to imagine a giant hammer coming out of the sky and squishing them dead. Those people don’t know what they’re talking about and you are going to be just great.

9. Know that someday, you’ll be in a place where you have accepted diabetes as a part of your life and do have tons of support from people you love. You’ll have a husband who knows how to change your pods and can spot your lows before you do and a dog that alerts when you have low blood sugars and friends who know what glucagon is and how to use it. And you actually do get to hang out with tiny treasures with diabetes and telegraph your love and concern for them as a health care provider. And sadly, diabetes doesn’t ever get easy, but it does get easier.

mentalhealth chronic illness type 1 diabetes

Exercise-things I wish I knew before I ran a marathon

Disclaimer: This is not medical advice, everyone is different, exercise affects our bodies in wildly different ways and what works for me may not work for you AT ALL. These are just helpful things I learned about over time.

1. People talk a lot about exercise LOWERING blood sugars, either during exercise, after exercise, etc. People don’t talk as much about exercise RAISING blood sugars. But it happens, and it happens for a reason: Your liver during exercise breaks down glycogen into glucose to feed your hungry muscles. After exercise is over your liver is often a little behind the power curve and keeps giving you glucose that you don’t actually need anymore. In a person with a functional pancreas, they just release insulin to cover the extra but we can’t do that. So then you’ve done all this work and you’re left with what? High blood sugars and no appetite? BOO.

My solutions:

-Check BG and give insulin as soon as I stop the work out. Regardless of my blood sugar and sensor reading, assume that it’s on the rise and bolus. How much was trial and error for me.

-Prolonged cool down: after the workout go for a looong walk or walk type(mild) aerobic effort. About 15 minutes usually does the trick, up to 30 if it’s been an intense workout. This requires time but it works.

-Give insulin before the workout is over, the exact timing of this requires trial and error but if I’ve been running a long time about 15 minutes before i finish I give some insulin to curb the rise.

2. Hydration status affects continuous glucose monitors. This makes sense but it’s ANNOYING. Sensors don’t read blood, they read interstitial fluid. If you get dehydrated, i.e. prolonged exercise, that fluid is less reliably telling that sensor what your blood sugar is doing.

My solutions:

-Stay hydrated, if I am going for a long run or one with limited resources(water fountains, etc) I bring a water bladder and try and take a few sips every 20 minutes. I also sweat A LOT so this might not be necessary for everyone.

-Carry my meter and double check (annoying but not more annoying than thinking I’m low for an entire run to find an hour later that I am not actually but instead high as a kite, or stopping the workout early for NO REASON!)

-Give a friend/partner the job of meeting you every few miles, having your meter ready and just requiring you to get some blood out of a finger. It feels nice to have support if you have a reliable enough person to do that. (Sidenote, parents are not always the best at this because they sometimes get confused about how to use technology to track you…)

3. Blood sugar drops at relatively reliable intervals. Without fail and no matter the basal rate, I drop after an hour of running. Again, as with everything, this was trial and error so figure out timing for yourself. And I have noticed more recently that if I’m at my highest aerobic threshold it can be faster (30 min) if I’ve come into the workout below 180.

-Eat fast acting sugar after an hour

-Eat a more complex carb source (with fat/protein) after 2 hours

-As always, being proactive with blood sugar drops really impacts both your mental state and it prevents your body wasting resources by dropping low and having the adrenaline punch. Getting low at the tail end of intense exercise can be devastating.

4. Pre-race adrenaline is real, and its real annoying with diabetes. Also, if your competition/race/meet/etc is in the AM you have adrenaline working against insulin plus wake up time cortisol working against insulin. This can turn into a real high blood sugar palooza.

My solutions:

-Bolus up to 2 times what I do on non competition days for food and correction (if needed). It scared the life out of me initially but it worked. It’s way nicer than ending up sick with ketones during a race.

-Get into stress reduction techniques. Meditation is pretty amazing and it’s power extends way past workouts. But it takes a lot of practice. Otherwise it’s easy to panic about blood sugars going up if you don’t “meditate right” (just FYI that doesn’t exist) which compounds the problem. Any other stress reduction techniques can work too.

5. High five a spectator once every mile-nothing to do with betes. I am an introvert so this was a horrible prospect for me. Until I was running endlessly and I was amazed at the amount of joy I got from picking out a stranger on the sidelines and high fiving the crap out of them. Even when they seemed to be real annoyed at having to high five me, cause that was HILARIOUS in the moment, laughter always helps a race.

Finally, be kind and patient with yourself. Remember that you are doing awesome athletic things and you’re doing them with the giant invisible burden of diabetes and acting like it ain’t no thing and you are a super hero.

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