Monthly Archives: June 2013

#DSMA June Blog Carnival. #Diabetes Devices.

June’s DSMA Blog Carnival prompts us to think about the many devices we use in our daily lives with diabetes, and asks some great questions:

Regardless of which type of diabetes you have – T1 T2 or T3 – you probably use one or more diabetes devices on a daily basis. For this post, when we refer to devices we mean blood glucose meters, insulin pens or pumps, and all other diabetes medications. This month we’re going to revisit the May 15th chat on Diabetes Devices and really think about what we use. We’d like to know:

How do you select the diabetes devices you use? To others looking into new or replacement devices, what would be your best advice to someone shopping around?

This really brings back some memories for me. If I may, let me give some advice by telling you how not to choose devices.

First, let’s talk about meters. After my diagnosis, I just accepted the first meter that was handed to me, and I used it for about ten years. I mean, they wouldn’t give me something that helps determine how I use insulin and the various ramifications of said usage without it being 100 percent accurate and never failing? Right?

Wrong. It’s not that my meter wasn’t good for its time (it was 1991, after all– only 45 seconds to get my BG!), but I didn’t even think of whether there might be an alternate meter I could use. And if the one I had was still working, why would I need a new one? Then came the day that an endocrinologist asked to see my meter, and she laughed at me when she saw it. She said, “You know, meters have really come a long way since the Mesozoic Era”. I had no idea. It simply didn’t occur to me that things could change, and meters could be even better. From then on, I tried to keep an eye on the latest improvements in meters and test strips, so even if I wasn’t changing meters, I would know if there was a major improvement of some kind that should prompt me to upgrade this very important device. Lesson: Stay current… maybe something better, or at least more useful, is out there.

Now, let’s talk about insulin pumps and infusion sets. When I first decided to start pumping insulin instead of injecting it, I had really only seen or read information on one pump product. So when my endocrinologist (who I had just started seeing six months earlier) said I should read about additional manufacturers of insulin pumps, I took her advice but didn’t really change my opinion about what I wanted.

In the end, I chose the pump that I’m using today for a couple of good reasons, and a few bad reasons. Chief among the bad reasons were the fact that I didn’t really consider the other pumps. I had my mind set on one only, and that’s the one I chose. Also, and this is very important: I didn’t ask anything about any other pump, and I didn’t get any demos or trial runs of any other pumps. This is completely not like me, and I want to kick myself every time I think about it. I should have done trial runs of other pumps. I should have listened to the sales pitches from the other reps (because that’s what you get… sales pitches). I should have asked a lot of questions.

I can’t say that I’m unhappy with my choice of pumps. What I have works very well, and it’s amazingly reliable. Those are big metrics for me. So I’m pretty happy I wound up with the pump I’m using. But I really wish I had done a little more due diligence, so I would be absolutely happy and sure of my choice. Lesson: Be an informed patient and consumer. It can only benefit you in the long run.

These are a couple of examples that I can point to in saying: Don’t make my mistakes. Learn about potentially new meters, medications, and yes, insulin pumps if you’re using one or plan to use one in the near future. Ask a lot of questions. A lot. Here’s an idea: Why not reach out via social media to get feedback on something you’re thinking of? Most of you know how responsive the DOC (Diabetes Online Community) can be, and how we’re very good at giving you the unvarnished truth. Finally, if you can, ask to do a trial run of your potentially new device so you can be even more sure you’re making the right decision.

I can’t guarantee that following this advice will help you land the perfect device to help you manage your diabetes better. But I do know this: More information will help you make the best choice you can make. And who wouldn’t be happy with that?

This post is my June entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/
 
 
 

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Wordless Wednesday… Do As I Say, Not As I Do.

From the Do As I Say, Not As I Do Department…

DSC00856

I started the day with about 20 units left in my reservoir. I thought I would make it back home after work before that was all gone, but, well, you know how things happen… Sometimes things happen that are out of your control.

I wound up getting home about half an hour later than I expected. The good news is that my pump, though scratched and extremely dirty, was still pumping. Despite what the display in the photo shows.

I’ve since changed my site and reservoir, and given my pump a thorough cleaning. I promise.
 
 
 

Interview with another clinical trial participant.

MB
Mary Beth Wyss is a friend of The Great Spousal Unit, going all the way back to college in Ohio back in the 80s. Today she lives near Dayton with her husband after raising two great kids, one of which is in college in Dayton and one of which is serving in the military abroad. We’ve been fortunate enough to share decades of vacations and graduations and weddings, and everything in between.
 
 
 
 
Because Mary Beth is a friend of Maureen’s, and because we live almost 600 miles away from her now, I don’t talk to her a lot. Still… for about twenty years, she was the only person I knew with diabetes. When I was thinking of going to an insulin pump, Mary Beth was the one with experience enough to know whether it would be worth pursuing. When I had questions about medications or something a doctor was telling me, or if we just needed to commiserate about a bad diabetes day or bad diabetes month or bad diabetes year, well, you probably understand. We haven’t talked a lot over the years, but whenever I’ve had a question about diabetes, she’s always been there with the straight answers.

When I heard recently that she’s part of a clinical trial testing a new medication to help treat Diabetic Macular Edema, I had a lot of questions.

The following is the unedited, straight version of Mary Beth’s experiences. Even if they’re tough to read in spots, I hope you’ll read through to the end. I promise you, it’s worth it. I think you’ll get a better understanding of how important a role clinical trials play in the future of Diabetes, and all our lives.
 
 
Stephen: First tell me a little about your story. When were you diagnosed, etc. If you want to talk about the family, how things have changed since diagnosis, or anything (or nothing) else, that’s okay too.

Mary Beth: I was diagnosed at the age of 24 – one year after I was married. I had an eye infection that wouldn’t clear up after 3 months of treatment. The lead doctor in the practice had “turned me over” to one of their associates, who kept repeating the exams and telling me to continue with the drops until I finally called the office and demanded to talk to the lead doctor again. After examining me, she told me that there had been no improvement and that usually indicated that there was something else playing into the equation and she suggested a full medical work-up. She contacted my family physician who ordered a barrage of tests (EKG, EEG, Blood work, etc). When I returned to the office to review the test results, they told me it was diabetes. My blood sugar was 435 the day they did the tests. I started oral medication, my blood sugar dropped and my eye infection went away.

Stephen: When did you first get a diagnosis of Diabetic Macular Edema? What was that like? How did it make you feel? Did it change how you feel about living with diabetes?

MB: About 10 years ago I started having trouble with my vision in my right eye. My eye doctor told me that it wasn’t something he could treat and he recommended me to a Retina Specialist. I spent most of the day in the specialist’s office, going through retina scans, having dye injected into my blood stream for pictures, etc. Finally they told me there was bleeding and swelling behind the retina and he performed a laser treatment. It was scary. I had to hold really still for what seemed like an hour. Afterwards I couldn’t see very well because of what he called “sun spots”. But the treatment helped and that’s all that mattered. A few years later the problem returned and I started seeing a different set of Retina Specialists. They recommended steroid injections in the eye (my right eye). Yeah – it was a bit frightening because they were actually sticking a needle in my eye! But there was such an amazing effect – like immediate improvement – that eventually I started asking for the injection. The results lasted a year at first, then 6 months, then 3 months and then they had no effect at all. And the left eye began to show symptoms similar to the right eye, so I had to start getting injections in both eyes.

The right eye continued to reject the injections and my vision was going downhill fast. They tried injections of other medications, then laser treatment, then a combination of the two medicines and finally a combination of laser and injection but with no results. About that time one of the doctors at the practice told me there was nothing more they could offer to fight this disease and called it Diabetic Macular Edema. That’s the first time I ever remember hearing that name. I came home and researched it on the internet and – sure enough – the symptoms were the same. And I realized that it wasn’t something that had just developed – it was my Diabetes coming back to haunt me.

When the trouble first started I sensed it had something to do with the Diabetes. Diabetes is a sneaky disease and doesn’t show its effects at first. You can go years “cheating” and not pay any consequences. I guess that’s what makes it so easy to cheat. You sneak one treat and no one sees; and there is no backlash. So you try for another and another. And as long as you don’t get caught, you don’t see the harm. But then the symptoms appear and you realize that once they finally start to show, it’s too late. You can’t change your ways and make everything better. Years of “cheating” has now taken a toll on your body and you can’t reverse it. Once the symptoms start, the best you can do is figure out how to deal with them and prolong the inevitable. My eyes were the first warning shot that I got that there was a problem. They were my “Achilles heel” if you will. Diabetics are prone to heart issues, kidney issues and eye issues. My heart and kidneys are strong; guess my eyes are taking all of the abuse.

Stephen: What kind of treatments did you undergo after the diagnosis?

MB: I sort of already went into this but I’ll elaborate, in case I forgot something. The first injection was at the ophthalmologist’s office after they realized things weren’t getting better. They told me they were giving me a steroid injection, which didn’t faze me because I’d had them before for joint pain. Then I realized the injection was going in my eye! I had driven myself to the appointment so I had to call my husband to come and take me home afterwards. He had a friend drive him to the eye doctor’s office so he could drive my car and not have two cars there. I was trying to talk myself into relaxing and detach myself from the reality of the situation when I realized my husband’s driver was being attended to because he almost passed out when he saw what they were doing! They do numb your eye before-hand with a topical steroid. And then they inject a numbing drug, kind of like they do at the dentist to numb your mouth. You don’t actually feel the injection – more of a pressure as they poke. The worst part, to be quite honest, is when they put the specula in to hold the eyelids open. There is a foreign object in your eye, so your eye is trying to push it out. Oh, and at that time they were putting Betadine solution in the eye to help prevent infection. Betadine solution tends to absorb moisture so your eye starts burning and watering, trying to put the moisture back in.

The second treatment was the laser treatment. They prep you to tell you that you need to sit very still and not move your head. And you need to hold your eye still so they don’t laser something other than their intended target. You realize how serious this is and that you could make one false move and go blind. No problem. (Editor’s note: WTF? Seriously? I hope you’re joking here!) Your eye is dilated so they can see deep into the back of your eye. And they’re shining bright lights into your eye (laser) so you tend to want to blink. And your eye waters. As the lasers continue, it gets harder and harder to hold your eye open. And they shoot the laser several hundred times. I usually ask how many times they plan to laser so I can keep count and know when the end is coming. Afterwards, all you see is spots in front of your eyes so it’s hard to walk, read, watch TV, etc.

At one point in time – out of desperation I guess – they tried combining the laser with the injection. After lasering the eye – 200 or so zaps – they injected the medication in hopes that they would play well together. Nothing happened. My eye felt very “picked on” but there was no improvement. The last thing they did was to inject two different medications into the right eye. The result: Nothing but blurriness in the right eye for weeks. Unfortunately, they tried this right before we left to go on a cruise so I was no help with the driving down and saw very poorly on the cruise. Luckily I was with family and they covered for me.

Stephen: How did you find the study you’re participating in?

MB: The last time I went to see my Retina Specialist and there was no improvement, one of the doctors “leveled” with me and told me they had done everything they could do with what was FDA approved. He told me to look into clinical trials. He explained that the drugs were trial medications and had not been approved by the FDA, but they were safe. He also explained that most studies offer the medications for free and some doctors write off what insurance doesn’t cover, to get you to participate in the study. Lastly he told me, “Today’s trials are tomorrows medications. If you want to get treatment now you have to help with the research.”

I came home and sat down at my computer and started researching “clinical trials.” I typed in Diabetic Macular Edema and spent hours pouring over the results. I found trials in Maryland, Wisconsin, North Carolina, California, etc. Most of the information suggested finding one nearby because of the frequency of the visits and the expense of travel. After months of searching I was beginning to get discouraged. And then an advertising campaign started up for the Wexner Medical Center at The Ohio State University. All of these people kept talking about the wonderful things they were doing and how marvelous the facilities were. So I started digging through the website until I found the Ophthalmology Department and I found the contact information for the chair of the department. I sent him an email, explaining my situation, and asked if there were any trials going on that would help. He gave me the name and contact information for one of their doctors and I called his office.

Again I went through the symptoms, the chronology of the treatments, etc. The nurse told me the doctor was involved in a few clinical trials that I might qualify for but, of course, they’d have to examine me first. So off to Columbus we went to see yet another doctor. After another full day of tests and measurements and blood work and questions, I was told that I did qualify for one of the clinical trials he was about to start. He explained that they’d have to send in my information and apply to DRCR (Diabetic Retinopathy Clinical Research) to see if I was accepted. And after they applied and I was accepted, it was just a matter of waiting until they got the study submitted and the details worked out. I saw that doctor in April. I was accepted into the study in June. I started my first treatment in December. (Editor’s note: This is similar to my experience. I first stated my interest in participating in a clinical trial last June; participation in my first trial started in April.)

Stephen: Tell me about the trial– Who are the plan sponsors (NIH, a university, JDRF, ADA, pharmaceutical firm, etc.)? How long is it? What’s the treatment? Is it a control group vs. a group taking a placebo, or something else?

MB: Here is the official blurb from the Havener Eye Institute’s web page:

“The National Eye Institute is sponsoring a clinical trial to evaluate three different anti-VEGF injections for the treatment of Diabetic Macular Edema (DME).

The retina is a thin layer of tissue that lines the back of your eye. It is nourished by blood vessels that become affected by diabetes. DME is the term used for swelling in the small central part of the retina used for sharp straight-ahead vision due to diabetes.

Injections into the eye of drugs that block a substance called vascular endothelial growth factor (“anti-VEGF drugs”) have been used to treat DME because abnormal levels of VEGF can be produced by a retina affected by diabetes. These abnormal levels of VEGF can cause leakage of fluid from retinal blood vessels, which can cause swelling of the retina and potentially vision loss. There are several anti-VEGF drugs. The three drugs being studied are called Lucentis® (ranibizumab), Eylea® (aflibercept), and Avastin® (bevacizumab).”

The trial is sponsored by the National Eye Institute. It is a two year trial, although I can drop out at any time if I feel it’s not working. The treatment is another injection but not steroids this time. It’s more of a long term solution, rather than a quick fix. It is a blind study, in that we were not told which medication we were being given. There are no placebos. Although both eyes qualified for the study, I had to drop out of it for the left eye because the vision was deteriorating and we had to act on it right away. However, once one eye is enrolled, the other is automatically treated with the same medication! The medications are free, as promised. And my doctor is writing off whatever insurance doesn’t cover, so there really is no expense to me, other than gas to get to Columbus. And I get a Wal-mart or Target gift card (my choice) after every visit, so that kind of offsets the gas.

Stephen: What has been your experience with the trial? Give me the good, the bad, and the ugly… or pretty.

MB: As for the overall opinion of the trial, I’d do it again in a heartbeat! The pros definitely outweigh the cons. There is the travel to Columbus once a month (Editor’s note: about 1 1/2 to 2 1/2 hours each way, depending on traffic), which is an inconvenience at the worst. The office visit is about a 4 hour process, from the time I walk in the door of the office building to the time I leave. There’s a vision test to track improvement, an OCT scan to track swelling, the actual doctor’s exam and the injections. There’s a log being kept of the medications I’m taking and my overall health. There seems to me a lot of paperwork, but I don’t mind. The fact that there is no cost is huge! And after complaining about the Betadine drying my eyes and causing burning, they now just dab the actual injection site with Betadine, which helps a lot! The doctor and the nurses are great and we’re on a first name basis now. They are all about my comfort, from propping up my feet during the injection to bringing me a blanket if the room is cold.

Stephen: Finally… Any advice for people considering participation in a clinical trial?

MB: My advice: If there is a clinical trial out there that is looking at whatever you’re dealing with, go for it! The secret is to make sure you click with the doctor and his staff. And if you don’t, keep looking. Not only are you benefitting future generations of people suffering from the same symptoms, you’re getting treatment NOW for problems that they may not find a cure for in the near future. And the way I look at it, if I have to suffer – fine. But if I can help people along the way – even better!
 
 
In case it hasn’t occurred to you yet, this is some seriously brave shit. Mary Beth, thank you so much for your courage, and thanks for recounting your experiences for all of us here.
 
 
 

Know Diabetes? Help Send a D-Kid to Camp.

DoYouKnowD

I saw a Tweet from Cherise Shockley this morning about the Do You Know Diabetes quiz. Novo Nordisk has partnered with the Diabetes Education and Camping Association to help send kids to D-Camp.

Take the Do You Know Diabetes quiz at www.doyouknowdiabetes.com

Novo makes a donation for every completed quiz. So share this everywhere today, help bust some diabetes myths, and send some kids to camp this summer!
 
 
Happy Friday
 
 
 

Medtronic and Dexcom in a good light.

Tuesday’s post covered a couple of potential issues with devices made by Medtronic and Dexcom. And I seem to remember a similar post that included Medtronic a couple of months ago.

Taken just as they are, these posts might give you the impression that I have a problem with Med-T and Dex. Trust me… I do not have an axe to grind. I really do try to be fair and balanced. Not fair and balanced like a certain news organization here in the States that eggs on congress to repeal the Patient Protection and Affordable Care Act (the house voted against it 37 times already), then champions House Speaker John Boehner when he states that “…creating a better environment for jobs has been and will remain our top focus”. But I digress.

What I’d like to do today is talk about the things that I really like about the Medtronic pump I have, and the Dexcom continuous glucose monitor (CGM) I’m using as part of a clinical trial. M’kay?
 
 
First, Medtronic.

The single best thing I can say about my MiniMed Paradigm® Revel™ insulin pump is that it’s reliable. It has never once failed me. Oh, I’ve gotten a motor error or two now and then, but I was always able to overcome that without too much difficulty. By “without too much difficulty”, I mean within five minutes.

I’ve also dropped my pump several times over the last three and a half years. I’ve scratched it. I’ve let it get dirtier than a medical device should ever be, and it still keeps going. It’s been on bike rides and runs and through airport security more than a few times. No problems here… still pumping.

And when it comes right down to it, what I want most out of a medical device designed to help keep me alive is reliability. My pump has that in spades.
 
 
Now, Dexcom.

There’s a lot to like about the Dexcom G4™ continuous glucose monitor. To begin with, the insertion process is simple, smooth, and often completely painless. For the study I’m participating in, I’m required to wear the sensor on my belly only, so I haven’t had a chance to try it anywhere else. But I really like the fact that I can get the sensor in easily, and that once it’s in I almost never feel it.

Since it’s not integrated with my pump, the Dexcom CGM has its own display device. Much has been written about how 21st century and sexy this little thing is. I mean, it is kinda nice, and it looks a lot like other electronic devices we all carry around every day. But I really dig two things about it. One, it holds a charge for a loooong time (and recharges quickly). And two, the range on the device is pretty good. I’ve gotten into the habit of reminding myself to put it in my pocket every time I stand up now, so I don’t leave it on a table or on my desk at work. But if I’m in a meeting in a big conference room, I can leave it on the conference table and get up to walk around the room without worrying about whether I’ll be out of range. At home, I can sit it on the front steps while I mow the front lawn (I have a small yard, but it’s big enough to be out of range for other CGMs).

Finally, I like the Dexcom Studio™ software used to track all of the data from the CGM. Lots of user-friendly, understandable graphs, charts, and other features that help me understand my glucose trends better. I could go into detail, but if you’re really interested in finding out more about it, you should probably check out the information on the Dexcom website.

I haven’t tried a lot of continuous glucose monitors (just Dexcom and Medtronic), but my impression of the Dexcom G4™ is that it’s the Cadillac of CGMs right now. If you disagree, feel free to let me know why by leaving a comment.
 
 
So you see, it’s not all bad. If you think about where we were twenty years ago, there really has been a lot of hard work done and progress made on insulin pumps and CGMs. I hope that in future years, Medtronic and Dexcom will be able to keep the best features of their current products, and improve and enhance the worst. Our lives, and the quality of our lives, depend on it.
 
 
 

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