Month: July 2022

Tips, tricks, and tools for a broken toe

by Dana Lewis

When I broke my toe last week, I went back and re-read my post that I wrote with what was helpful when I broke my ankle 3 years ago. As I thought, there were still several pertinent ideas and tools that were useful for a broken toe. But I’ve also discovered a few more specific to broken toes, so this post covers a quick summary of the ones I’ve used for both a broken ankle and a broken toe, and which new tools I’ve found useful this time around. (All links are Amazon affiliate links.)

The biggest help I found from my previous post was a reminder that yes, it hurts to break a bone, and yes, I am going to be fatigued for a long time as my body heals and regrows bones. Thankfully it’s “just” a (pretty badly) broken toe but it’s less bone to regrow than a trimalleolar ankle fracture!

Tips, Tricks, & Tools for living with a broken toe, written by Dana M. Lewis

Things that I had from last time that were immediately useful:

  • Crutches. (I bought my forearm crutches from the ER in New Zealand, and then kept them for just in case someone ever needed crutches again. So luckily, I had crutches for getting to urgent care, otherwise I probably would’ve had to crawl down the hall to our car.)
  • Laptop lap desk, also using the same one I had from before.

What I wish I still had and got again or thought about getting:

  • Shower bench. We gave ours away, and it took what felt like a long time for the one I ordered this time to come (I ordered Wednesday and it came Saturday). Shower benches make a huge difference for safely getting clean and my overall quality of life, as I love showers. I’ll probably keep ours in the back of the closet from now on, like the crutches, so we don’t have the same hassle we did this time with trying to get it to our house.
  • Knee scooter. Again, we gave my knee scooter away. This time I got a hands-free crutch (below) but still thought a knee scooter would be useful around the house, especially if the forearm crutches bothered my hands. I jumped on one of our local “buy nothing groups” to see if someone had one I could borrow, because I remember seeing people asking for and giving away scooters. I actually found a recent post where someone asked and multiple were offered, and reached out to one of the people who had offered one up. She not only lent it to me, she ended up bringing it over and dropping it off so Scott didn’t have to drive to go get it! It’s also a much more robust knee scooter than I had before – I call it my all-terrain scooter – and it’s fantastic for being outside on my beloved paved trails for exercise, but it is a little less optimal for getting around corners inside the house. For my broken ankle, the one I had before was perfect. For a broken toe and my desire for outdoor activity, this one (again, I borrowed one but it looks like itis this one) is perfect for me right now.
  • Cast bag for keeping my foot dry in showers. We gave the one I bought last time away, and I wish I had one even though I don’t have a cast. I have my foot taped and I dislike the feeling of the wet tape on my foot for hours after the shower. I didn’t buy another one, but I would’ve used it if we still had the one from before.
  • Pouch/bag for crutches. I pulled out the same pouch I had used before that’s on a long drawstring to wrap around my crutch handles. It’s a little floppy given they are forearm crutches, but I use the pouch to occasionally carry my phone across the house if I don’t have pockets in my shorts, or a 12 oz can of soda. (Otherwise for carrying stuff around, the basket on the knee scooter is more ideal).

Here are some things I had this time that were helpful that I didn’t have from last time:

  • Hands free crutch. ( This is the one I got.) This is designed so your leg is secured with your weight resting through your knee, and your knee is held in a 90 degree angle with your foot pointed out behind you. You can walk around the house or outside with it. My main issue with it is that you can’t change the angle of your knee, so you can’t sit down with it (including for the bathroom), so you have to unstrap it every time you want to sit down. If you’re up and moving around for a few minutes, or going out for a walk, then the hands-free crutch is awesome and I really like it. For moving around inside the house for a quick trip – like to go from a chair to the bathroom or to go grab a drink – I would just as likely choose my crutches or the knee scooter, depending on what was nearby.But the main reason I got the hands-free crutch was because with my broken ankle, I had 6 weeks in a cast and then a boot where I slowly resumed weight-bearing activity. That was a long time with my ankle not moving, and my ankle and my right hip ended up being really weak by the time I returned to weight bearing. Given that I’m not immobilized in a cast this time, I’m trying to keep my ankle moving in the air and also keep my right hip more active. The hands-free crutch felt expensive since I wasn’t getting it as my primary mobility aid, but I can already physically feel a difference for getting to use it to go on short walks in terms of not losing as much muscle in my hip and leg as I would if I was just scootering or crutching around. Also, the mental health benefits of having a variety of activity options – either hands-free crutch walks or scootering – is really nice.PS – one more tip, make sure to measure the circumference/width around your thigh. I was on the upper end of thigh size for their recommended use case with this hands-free crutch. As soon as I got it, I saw why. They have these adjustable pieces that get set to help keep the device against your upper thigh. They can go wider than the circumference they describe, but then it won’t be as secure on your upper leg. If I was an inch or two above the recommendation, I might have still gotten it, as I’m not planning to do more than straight forward walks with it, but something to consider, if you’re trying to work on your feet with it or move around with kids more nimbly, is that it may influence your balance on it if it’s not as tight.
  • Tape. At urgent care, they used BRIGHT PINK in your face medical tape that sticks to itself. They told me I could change it for any other tape if it got debris in it and it stopped sticking to itself. It was really tight across my whole foot and bothered me all day and the first night, so we ended up cutting it where it was across the left side of my right foot (by the big toe), then using other tape that I already had to re-wrap the entire thing. The pink tape is still there, but the “hold the tape to the entire foot” tape is now purple (way better color to look at) and the tightness across the top of my foot is no longer as painful.I happened to already have this roll of tape because I also use this tape sometimes to put lambs wool and wrap it around my toes to prevent blisters with ultra running, which is another great use case for it.
  • Another thing I have now that I didn’t use last time is easy to open pill containers for pain relievers, that can hold several doses at a time. Last time I described leaving a pile of ibuprofen on my bedside table, because we didn’t have kids or pets in our household. Now we have (adorable) kittens, so I can’t leave medication out. I have these multi-day pill containers that take up a lot less space than traditional multi-day pill containers, and the reason I got them was to have multiple compartments that take up less space (I don’t use days of the week at all). So I have one of these filled with ibuprofen and tylenol, each in several compartments, and one sits on my bedside table and one sits on my desk so that I have the medication in arm’s reach for whenever it’s time to take it, without having to get across the house to find it.
  • The other thing I didn’t have last time that’s not likely going to be used by everyone with a broken toe is these multi-compartment pill containers (in purple!). I use these for enzymes (pancreatic enzyme replacement therapy (PERT) for exocrine pancreatic insufficiency (EPI or PEI)), which I have to take any time I eat something. Like pain medication, it’s nice to have these in arm’s reach. I bought these when I found out I had EPI and keep 1-2 filled to throw in a bag for when I go out. However, I ended up filling several more (it came in a set of 7) and now have one on my bedside table, in the living room, and at my desk so again, they’re always in arms reach. I have multiple enzyme options (one prescription type, two over the counter type), and so what I like about these is one side is a larger compartment where I have the two over-the-counter enzymes dumped in, and then the more expensive prescription enzyme pills I put 2-3 in each of the four smaller compartments, which makes it easy to see at a glance when a container is running low and needs to be swapped out or re-filled.
    One purple multi-pill organizer filled with multiple types of pills, in a tray that holds 7 of these containers.
  • Small fridge or insulated bags. We bought a small fridge a while back which can be plugged into a wall or in the car, and it’s come in handy for broken toe/non-weight bearing life so I can have extra hydration in arm’s reach. Last time, I used a portable cooler/cooler bag with ice packs in it to keep a day’s worth of drinks and snacks nearby. Having lots of hydration without having to ask Scott to keep bringing me drinks is nice for both of us, so having the fridge is nice. If I didn’t have the fridge, I’d be using our insulated bags that we use every weekend for car trips. And if I didn’t have cooler bags, I’d be using a styrofoam box with ice packs instead. (If you have any type of meal delivery service, save one of the boxes and some of the ice packs in the freezer, and you can keep food and drinks nice and cold by rotating out the ice packs every few hours or once or twice a day, depending on the size of the box and the ice packs!)

By the way – if you end up on this post searching for tips about broken toes, it might be worth still reading my other post about returning to weight bearing after a broken ankle as it has tips and reminders about the level of fatigue ANY broken bone brings, even when it’s “just” a toe!

New Research on Glycemic Variability Assessment In Exocrine Pancreatic Insufficiency (EPI) and Type 1 Diabetes

by Dana Lewis

I am very excited to share that a new article I wrote was just published, looking at glycemic variability in data from before and after pancreatic enzyme replacement therapy (PERT) was started in someone with type 1 diabetes with newly discovered exocrine pancreatic insufficiency (EPI or PEI).

If you’re not aware of exocrine pancreatic insufficiency, it occurs when the pancreas no longer produces the amount of enzymes necessary to fully digest food. If that occurs, people need supplementary enzymes, known as pancreatic enzyme replacement therapy (PERT), to help them digest their food. (You can read more about EPI here, and I have also written other posts about EPI that you can find at DIYPS.org/EPI.)

But, like MANY medications, when someone with type 1 diabetes or other types of insulin-requiring diabetes starts taking them, there is little to no guidance about whether these medications will change their insulin sensitivity or otherwise impact their blood glucose levels. No guidance, because there are no studies! In part, this may be because of the limited tools available at the time these medications were tested and approved for their current usage. Also this is likely in part because people with diabetes make up a small fraction of the study participants that most of these medications are tested on. If there are any specific studies on the medications in people with diabetes, these studies likely were done before CGM, so little data is available that is actionable.

As a result, the opportunity came up to review someone’s data who happened to have blood glucose data from a continuous glucose monitor (CGM) as well as a log of what was eaten (carbohydrate entries) prior to commencing pancreatic enzyme replacement therapy. The tracking continued after commencing PERT and was expanded to also include fat and protein entries. As a result, there was a useful dataset to compare the impacts of pancreatic enzyme replacement therapy on blood glucose outcomes and specifically, looking at glycemic variability changes!

(You can read an author copy here of the full paper and also see the supplementary material here, and the DOI for the paper is https://doi.org/10.1177/19322968221108414 . Otherwise, below is my summary of what we did and the results!)

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In addition to the above background, it’s worth noting that Type 1 diabetes is known to be associated with EPI. In upwards of 40% of people with Type 1 diabetes, elastase levels are lowered, which in other cases is correlated with EPI. However, in T1D, there is some confusion as to whether this is always the case or not. Based on recent discussions with endocrinologists who treat patients with T1D and EPI (and have patients with lowered elastase that they think don’t have EPI), I don’t think there have been enough studies looking at the right things to assess whether people with T1D and lowered elastase levels would benefit from PERT and thus have EPI. More on this in the future!

Because we now have technology such as AID (automated insulin delivery) and CGM, it’s possible to evaluate things beyond simple metrics of “average blood sugar” or “A1c” in response to taking new medications. In this paper, we looked at some basic metrics like average blood sugar and percent time in range (TIR), but we also did quite a few calculations of variables that tell us more about the level of variability in glucose levels, especially in the time frames after meals.

Methods

This person had tracked carb entries through an open source AID system, and so carb entries and BG data were available from before they started PERT. We call this “pre-PERT”, and selected 4 weeks worth of data to exclude major holidays (as diet is known to vary quite a bit during those times). We then compared this to “post-PERT”, the first 4 weeks after the person started PERT. The post-PERT data not only included BGs and carb entries, but also had fat and protein entries as well as PERT data. Each time frame included 13,975 BG data points.

We used a series of open source tools to get the data (Nightscout -> Nightscout Data Transfer Tool -> Open Humans) and process the data (my favorite Unzip-Zip-CSVify-OpenHumans-data.sh script).

All of our code for this paper is open source, too! Check it out here. We analyzed time in range, TIR 70-180, time out of range, TOR >180, time below range, TBR <70 and <54, the number of hyperglycemic excursions >180. We also calculated total daily dose of insulin, average carbohydrate intake, and average carbohydrate entries per day. Then we calculated a series of variability related metrics such as Low Blood Glucose Index (LBGI), High Blood Glucose Index (HBGI), Coefficient of Variation (CV), Standard Deviation (SD), and J_index (which stresses both the importance of the mean level and variability of glycemic levels).

Results

This person already had an above-goal TIR. Standard of care goal for TIR is >70%; before PERT they had 92.12% TIR and after PERT it was 93.70%. Remember, this person is using an open source AID! TBR <54 did not change significantly, TBR <70 decreased slightly, and TOR >180 also decreased slightly.

More noticeably, the total number of unique excursions above 180 dropped from 40 (in the 4 weeks without PERT) to 26 (in 4 weeks when using PERT).

The paper itself has a few more details about average fat, protein, and carb intake and any changes. Total daily insulin was relatively similar, carb intake decreased slightly post-PERT but was trending back upward by the end of the 4 weeks. This is likely an artifact of being careful to adjust to PERT and dose effectively for PERT. The number of meals decreased but the average carb entry per meal increased, too.

What I find really interesting is the assessment we did on variability, overall and looking at specific meal times. The breakfast meal was identical during both time periods, and this is where you can really SEE visible changes pre- and post-PERT. Figure 2 (displayed below), shows the difference in the rate of change frequency. There’s less of the higher rate of changes (red) post-PERT than there is from pre-PERT (blue).

Figure 2 from GV analysis on EPI, showing lower frequency of high rate of change post-PERT

Similarly, figure 3 from the paper shows all glucose data pre- and post-PERT, and you can see the fewer excursions >180 (blue dotted line) in the post-PERT glucose data.

Figure 3 from GV analysis paper on EPI showing lower number of excursions above 180 mg/dL

Table 1 in the paper has all the raw data, and Figure 1 plots the most relevant graphs side by side so you can see pre- and post-PERT before and after after all meals on the left, versus pre and post-PERT before and after breakfast only. Look at TOR >180 and the reduction in post-breakfast levels after PERT! Similarly, HBGI post-PERT after-breakfast is noticeably different than HBGI pre-PERT after-breakfast.

Here’s a look at the HBGI for breakfast only, I’ve highlighted in purple the comparison after breakfast for pre- and post-PERT:

High Blood Glucose Index (HBGI) pre- and post-PERT for breakfast only, showing reduction in post-PERT after breakfast

Discussion

This is a paper looking at n=1 data, but it’s not really about the n=1 here. (See the awesome limitation section for more detail, where I point out it’s n=1, it’s not a clinical study, the person has ‘moderate’ EPI, there wasn’t fat/protein data from pre-PERT, it may not be representative of all people with diabetes with EPI or EPI in general.)

What this paper is about is illustrating the types of analyses that are possible, if only we would capture and analyze the data. There are gaping holes in the scientific knowledge base: unanswered and even unasked questions about what happens to blood glucose with various medications, and this data can help answer them! This data shows minimal changes to TIR but visible and significant changes to post-meal glycemic variability (especially after breakfast!). Someone who had a lower TIR or wasn’t using an open source AID may have more obvious changes in TIR following PERT commencement.

This paper shows several ways we can more easily detect efficacy of new-onset medications, whether it is enzymes for PERT or other commonly used medications for people with diabetes.

For example, we could do a similar study with metformin, looking at early changes in glycemic variability in people newly prescribed metformin. Wouldn’t it be great, as a person with diabetes, to be able to more quickly resolve the uncertainty of “is this even working?!” and not have to suffer through potential side effects for 3-6 months or longer waiting for an A1c lab test to verify whether the metformin is having the intended effects?

Specifically with regards to EPI, it can be hard for some people to tell if PERT “is working”, because they’re asymptomatic, they are relying on lab data for changes in fat soluble vitamin levels (which may take time to change following PERT commencement), etc. It can also be hard to get the dosing “right”, and there is little guidance around titrating in general, and no studies have looked at titration based on macronutrient intake, which is something else that I’m working on. So, having a method such as these types of GV analysis even for a person without diabetes who has newly discovered EPI might be beneficial: GV changes could be an earlier indicator of PERT efficacy and serve as encouragement for individuals with EPI to continue PERT titration and arrive at optimal dosing.

Conclusion

As I wrote in the paper:

It is possible to use glycemic variability to assess changes in glycemic outcomes in response to new-onset medications, such as pancreatic enzyme replacement therapy (PERT) in people with exocrine pancreatic insufficiency (EPI) and insulin-requiring diabetes. More studies should use AID and CGM data to assess changes in glycemic outcomes and variability to add to the knowledge base of how medications affect glucose levels for people with diabetes. Specifically, this n=1 data analysis demonstrates that glycemic variability can be useful for assessing post-PERT response in someone with suspected or newly diagnosed EPI and provide additional data points regarding the efficacy of PERT titration over time.

I’m super excited to continue this work and use all available datasets to help answer more questions about PERT titration and efficacy, changes to glycemic variability, and anything else we can learn. For this study, I collaborated with the phenomenal Arsalan Shahid, who serves as technology solutions lead at CeADAR (Ireland’s Centre for Applied AI at University College Dublin), who helped make this study and paper possible. We’re looking for additional collaborators, though, so feel free to reach out if you are interested in working on similar efforts or any other research studies related to EPI!