Monthly Archives: November 2013

Clinical Trial Update, week four.

Four of the days during my clinical trial are deemed “insulin sensitivity” days.

On those days, I have to have my meals planned out, and eat them at the same time. Let me clarify what that means: I have to eat the same thing, at the same time, each of those days. Nothing extra, unless I need to treat a low, which I can only do with glucose tabs.

In addition to that, I have to stick to a strict schedule of BG checks during the day. I have to test at least seven times: Before breakfast, lunch, and dinner. Exactly two hours after breakfast, lunch, and dinner. And at bedtime. Since my days also included a snack between lunch and dinner, I checked then too. I also had a snack after dinner, but it was right around the time I needed to perform the post-prandial (after meal) check, so I killed two birds with one stone there.

Confused yet? Don’t be. We captured it all on a spreadsheet:

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SIDay2

This spreadsheet lists all of my glucose testing and meals for these days. If I needed to treat a low, I added that on. I completed and e-mailed a spreadsheet for each of these days to the research team in Virginia.

Now, the idea with the meal plan was not to eat especially healthy or especially unhealthy. In fact, I was told I could eat whatever I wanted. But once I decided on a plan, it was locked in and I couldn’t change it mid-study. The idea is to measure glucose variability on these days. And by sticking to a regimented schedule of glucose checks and identical carb intake at regular times, the research team would be guaranteed that they’d be testing apples to apples, if you know what I mean.

Regarding the meals: This is pretty much what I’m eating for breakfast and lunch most days anyway. And depending where my BG is, I might or might not have a snack in the afternoon. The hard part for me is that at the end of my workday, I’ve got a 15 minute, half mile walk up the street to the subway, which almost always drops me about 30 mg/dL (Hello Big Blue Test). So I try to be at about 120 mg/dL or so before I leave work (there’s another BG check). On all of these days, even with a snack, I seemed to be low by the time dinner rolled around. Sometimes sooner.

Dinner was definitely different on these days for me. Generally speaking, I do not do boxed dinners. I don’t even eat a lot of frozen processed food of any kind. Not because I’m a health nut. I just find doing my own thing with fresh ingredients is tastier. I know… I really like to live on the edge, right?

These days always reminded me of the early days of my life with diabetes. Inject the same amount of insulin at the same time every day… no exceptions. The diabetic exchange diet… no exceptions. Don’t eat anything more than you’re supposed to. If you do all of these things and you’re not staying in range, it’s your fault. It’s no wonder so many of us got our relationships with food messed up.

The difference here was that I knew these days would end, and I’d go back to a normal way of dealing with my diet. That made going through these days pretty easy, despite the occasional low.

It’s too bad (read: unfair) that some People With Diabetes are still made to feel this way about their eating habits. Diets that give us more flexibility in what we consume, and when, will allow us to figure out what works for us quicker and will allow us to eventually settle to a plan that works for each person individually. We’ll still have our not-so-perfect moments. But the truth is: We had plenty of those with the exchange diet too.

Again, not all studies are like this. It’s just a feature of this particular clinical trial, and I wanted to pull back the curtain a little to show you what it’s like. I think I’ve got one more update to give, probably next week.
 
 
 

Happy World Diabetes Day, 2013.

It’s World Diabetes Day 2013!

Thanks, and a Happy WDD to you too.

I’m very happy on a day like this, knowing that people all over the world—not just People With Diabetes, but people with all kinds of backgrounds, from every corner of the globe, are tuned into this one day designed to raise awareness and promote advocacy for our cause.

I am not happy about the reason for this day, and it is my fervent hope that we will one day look at November 14 as a day to celebrate a cure for diabetes.

Did you know that 382 million people are living with diabetes right now? The population of those living with the big D is growing in every country. Part of that is surely the fact that technology and drugs are better, so more of us are living longer, and that’s good.

But did you know that diabetes caused 5.1 million deaths this year alone? The long reach of this insidious disease is mind-blowing. Confession: When I was first diagnosed, one of the little factoids I found somewhere said that the life expectancy of the average male with diabetes in America was 59½. Ever since I read that, my goal has been to blast through that statistic and help skew it in the upward direction. More has to be done on a global scale… we must help those who don’t yet have access to the tools we have to manage diabetes.

Did you know that four out of five people diagnosed with diabetes live in what are considered low or middle income countries? Places where insulin is hard to come by, let alone refrigeration for it. For some, having a glucose meter and test strips is a pipe dream. Still others die simply from a lack of education about things like hyperglycemia, retinopathy, infections, heart problems, and other issues that are of particular concern to those of us living with this condition.

Those are the latest figures. They are taken from this year’s diabetes atlas, prepared by the International Diabetes Federation.

Take a look at how the numbers have changed in a year, and you’ll begin to see (if you haven’t already) why it is so important for us to:

1. Stay healthy – Live Well

2. Raise Awareness – Living well doesn’t mean it’s easy

3. Share our stories with others – By sharing our experiences, we become an example and help crowdsource ideas that will improve outcomes

Hey, we’re 382 million strong. Even if only a quarter of us do the three things above, we’ll know that nearly 100 million are making a difference—a positive difference—for people everywhere.

How are you telling your story today?
 
 
 

Clinical Trial Update, Week Three.

Remember that thing I wrote last week about testing the Dexcom G5? It doesn’t look like that’s going to happen. At least not now. There’s a delay in delivery of the device, and it may not be until next year when it can be tested.

I’m finding out that this isn’t uncommon in clinical trials. And my feeling is: Dexcom did a great job developing the G4 and making sure it was ready before it was rolled out. I’m going to trust that there’s a good reason for the delay.

Nevertheless, my study continues. The goal is really designed to test glucose variability anyway, and that can be done with or without a new CGM.

Last week, I made the drive down to Charlottesville for an outpatient visit to the clinical research unit (CRU) at the University of Virginia Medical Center. The team was kind enough to put me up in their research house (where they do outpatient testing of the Artificial Pancreas) so I wouldn’t have to pay for a hotel room.

The next morning, I was at the CRU at 6:30 a.m. I had to be fasting for this test, by the way. Throughout the day, there was a lot of testing going on, but I spent nearly all of my time in a hospital bed, with IVs inserted in both arms.

It was a last-minute decision to wear my YouCanDoThis Project T-shirt. I didn’t think much about it when I put it on, but as the day wore on, I think it helped me stay strong. Read on to find out why.

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There was a lot of blood drawn from those IVs. Beginning at 7:15, they started taking blood out every 15 minutes. The procedure was the same each time: Use a syringe to draw out a little blood, and discard it. Then draw anywhere from 2 CCs to 5 CCs of blood to give to a technician, who gets two BG readings from the sample. Finally, a third syringe is used to inject saline into the IV, so blood doesn’t dry up in the tubing. That’s why the first syringe was always discarded… probably saline in it, which would change the BG reading.

Dr. Sue Brown was in the room almost all the time too, monitoring my BGs and making sure things were on schedule, and we were able to share cycling stories throughout the morning.

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At 8:00 a.m., I was given a carb boost drink (chocolate!), designed to raise my glucose. It took about two hours, but I eventually got up to 297 mg/dL. Once I leveled off a bit, but while I was still high (around 10:00), I received an injection of regular insulin… right into an IV.

Then we waited about two more hours for my glucose to make it down. All the way down to 59 mg/dL. Beginning at 12:00 noon, the team started taking blood out of the IV every 5 minutes until the end of the test at 3:00.

You know, it’s a strange feeling waiting for your glucose to go up, knowing there’s nothing you can are supposed to do about it. But it’s even stranger waiting for your glucose to go down. Feeling the effects of hypoglycemia coming on. Feeling the fog entering your brain, and the world getting smaller, and talking about how you’re feeling while all of it is happening (that was not part of the testing– I just shared).

After that, they gave me a dextrose drink to help me get up to at least 80 mg/dL. Then another. Once I made it over 80 at about 1:30, they fed me lunch. A cheesy, lemon pasta with shrimp, a great salad, and fresh (no, really fresh) fruit for dessert. As you may have imagined, it was delicious. The blood draws and monitoring continued until 3:00 p.m.

Dexcom graph showing my BG variability during the test.

Dexcom graph showing my BG variability during the test.

So in all, I think there were 56 blood draws, 56 BG tests during my visit. I’ve written about this here so you could get a window into one day of my experience during a clinical trial. They’re not all like this. My previous study didn’t have any days like this.

Like I’ve said before, my job is to help researchers move the needle toward better outcomes for People With Diabetes. If that involves testing a website, or sitting still for intentionally induced hyerglycemia and hypoglycemia, it’s worth it because of what it could mean for those who need better outcomes. If you’ve been considering volunteering for clinical trials, I hope you’ll decide to do it. If you need help getting started, click the E-mail Stephen link on the top left of this page and I’ll point you in the right direction.
 
 
 

D-Athletes: Your medal is waiting.

Just a quick Friday reminder about our Diabetes Awareness Month initiative: Champion Athletes With Diabetes. Your medal is waiting!

If you’re living with diabetes, and you’re active; or if someone close to you is living with D and is active, we’ve got an honest-to-goodness medal we’d like to award you. It looks like this:

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There are only four simple things to do to get yours:

1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

I think D-Athletes are amazing. It takes a tremendous amount of planning, effort, and bravery to compete, or maintain an exercise routine. Heck, sometimes, it’s everything we can do just to walk around the block. Getting out of your comfort zone and taking that brave step is something that should be recognized and rewarded.

If it’s a big deal to you, it’s a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life. Send an e-mail for your award today.
 
 
 

Medical IDs– Update your info.

I’ve seen a few #dblog posts recently (like this one) from writers talking (and asking) about medical ID gear. So I thought I would weigh in on the subject too.

Officially, I’m still wearing my Medic Alert necklace that I purchased about 15 years ago (click here to see– no, I don’t have the beaded chain). The reasons are simple: I’m okay with how it looks, it’s durable, and it’s always around my neck. I really only take it off to swim.

But it’s not that simple. Medic Alert keeps a profile on you containing lots of information like your emergency contacts, your medical team, and more. The idea is that responders can call the number on the back of my ID, give the serial number on the back, and get all of this info in a flash. While I’ve had my necklace for a long time, I recognize that some of the important information is out of date.

How out of date? Really, really out of date.

I logged onto the Medic Alert site. Well, no, that’s not exactly what I did. I went to the site and had to create a user ID and password. It’s been so long since I updated my information that Medic Alert has gotten into the 21st Century and actually created an online way for you to update your information. For all I know, this could have occurred back in 1999, because it’s been that long since I last updated my info.

Since then, I’ve changed doctors (3 times), I’ve changed insulins (twice), I’ve added an insulin pump, and I actually got a mobile phone!

Moral of the story: It’s great to have something that alerts responders of your condition, and who to contact when you can’t do it yourself. Extra points if it looks good too. But something new and bright and shiny doesn’t help if the information associated with it is stale.
 
 
 

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