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I’ve Ran Out of Infusion Set Placement Sites

My infusion set sites are becoming more and more difficult for me to keep fresh. I can’t wear an infusion site on my stomach. I’ve explained this in the past, but basically, I’m too fat. I have too many “rolls” in my stomach that when I bend or stretch or exercise, the rolls do what they do and roll up. When this happens, no matter what kind of adhesive is being used, the site falls off.

I’ve tried different infusion sets over the years with the trials of all the pumps that I’ve used and they are all the same. So, I just don’t think there’s much that can be done about it.

So, I’m stuck with the upper portion of my buttocks and the mid to top area of my quads. There are only so many spots in these areas that I can inject an infusion set. This is why I take so many insulin pump breaks because I just need to allow these areas some time to “heal”

The other issue is that I use too much insulin. I’ve decreased my usage compared to the last several years, but it’s still not where I want it to be. This leads to the area under the site filling up with insulin too quickly and then pushing up on the cannula which then leads to the infusion site leaking.

This then leads to frustration, which leads to pump breaks, which leads me to not want to be surrounded by all this diabetes technology and just taking it old school to no pump or CGM. That can sometimes lead to bad news, however, I’ve had some success in the past with using Tresiba and Novolog, but that’s a different story for a different time.

All that being said, I am still excited for the MiniMed 670G and can’t wait to get started on it (don’t know when I will yet).

Any recommendations from y’all on some more interesting places to try the infusion site?

Any and all help is totally welcome.

Endo Appointment Review – Another Great Discussion

Last Monday was my endo appointment. Unfortunately, I didn’t realize it was my endo appointment, so I didn’t get any blood work done before hand. This would usually be a waste of an appointment, but I’m thankful for the 630G and a lot of great data that we could discuss anyway.

First, we started with an in-office A1C, for whatever that’s worth. 8.1. Not very good. I knew it was going to be high because I spent 45 days without going to the gym and visiting my family in PA, which I tend to eat pretty bad while up there. My weight was down, but only about a pound, not too happy about that.

We couldn’t go over any labs, which I was curious to know where my triglyceride numbers had gone to. Previously, they were amazing, 6 months after being at “heart attack” levels. I’m going to get my blood work done this week, so I am lucky to have an endo that is willing to review my reports after an appointment and send me an email with any recommendations or updates after viewing that.

I had two main concerns going into the appointment, which is how we start out, her asking me, what’s been going on? Morning and after meal spikes. In the morning, as soon as I wake up, my blood sugar just starts to shoot up. Without eating, without drinking anything, just as soon as I wake up, it just shoots up. I do drink coffee pretty soon after I wake up, but I’ve purposely held off on the coffee for a little while and the same thing happened.

What I’ve done in the past is just take a 5-7 unit bolus as soon as I wake up. No real rhyme or reason behind it, just give a little extra insulin to combat that spike that I know is coming. Then, I need to cut out all carbs during breakfast, well as many as I can. I typically eat a 3 egg omelette with cheese or ham in it. When I do this, it definitely helps stabilize my blood sugars until lunch.

But, then that’s when the next issue happens (depending on what’s for lunch). If I eat what I’m supposed to which is a salad with no croutons and a vineagar based dressing, then it doesn’t spike that bad. I can usually control this lunch spike. 

On a good, normal day, I will then hit the gym. This brings down any high that I had and usually drops me pretty low. This is where I see a fun amusement park looking slide on my CGM. This is followed up with a nice, cold Gatorade that also puts back into my body 120 calories that I just burned off.

Dinner is my biggest problem and my biggest spike. Dinner is where I tend to slip up. When I am on my healthy eating habits, none of this happens. So, that is the root cause of the problem. Eating healthier. Unfortunately, I eat unhealthy way too often. When I do, I eat a lot of carbs. Those carbs then cause a spike. I have tried all of the different times to take insulin before eating my meal. I’ve taken insulin 15 minutes before and pre-bolused… same thing. I’ve taken it 30 minutes before, same thing. I’ve taken it the same time I eat, 10 minutes after…. it doesn’t matter.

We discussed that it seems like an insulin sensitivity issue. Where I place my infusion sites is the same areas I’ve been doing it for 11 years. I also use a lot of insulin, so within 2 days there’s nearly 250 units of insulin that has been delivered through that cannula. This is where the problem exists… too much insulin.

We felt that all of these spikes can be resolved with less insulin. So, like I try and do with any problem, we reverse engineered it. I’m using a lot of insulin because of lack of exercise and poor eating habits. So, if we change these two items, I will need less insulin, which will have an effect on my insulin sensitivity. Less insulin being delivered in a short period of time, will allow my body to absorb this insulin and allow the insulin to do what it needs to do.

We also discussed several other things. The use of Metformin as an additional treatment to people with type 1. Invokana being used as an additional med used also.

She knows that I do not like adding additional medications to my list of ones that I’m already using. This is why she will make a recommendation, tell me to do my own homework, talk with people in the DOC and then come back with a decision. So, for now, the goal is to accomplish this all naturally with better eating habits.

There is also the idea of quitting pumping all together and just doing MDI again, but I don’t know if I’m ready for that.

Taking Insulin Pump Breaks

I don’t think that I have ever written about my pump breaks on here, but I know that I have mentioned them on Twitter before. Basically, at least once a month I like to take a break from my pump.

The first question that you may ask is, “does this have an impact on your blood sugars?” You’re damn right it does. But, I don’t care.

Let me explain.

I don’t care because sometimes I get frustrated by my pump. I may have 3 consecutive days of needing to change infusion sets for whatever reason. Maybe one fell off doing hours of yard work in 90 degree weather. Maybe I decided to take a nice, long, hot relaxing bath which made the infusion set adhesive wear away and easily fall off afterwards. It may even be possible, that I just don’t feel like inserting a new infusion set that night, so I just go a couple of nights without wearing one.

Warning….if you live your diabetes life on label and the thought of people doing crazy, off-label stuff makes you upset, then please do not read any further, because the following is definitely not prescribed, nor approved of by my doctor (and not really me either, but sometimes, I don’t care and my sanity means more to me.)

I always have a full supply of syringes as backup. When I am off the pump, I just use a vial and a syringe…take it back old school. When it comes to basal insulin, well, here is where we trail off that on-label track.

I have two options during these times. My doctor gives me samples of Levemir every so often. If I have a sample pen of Levemir at home, then I use that. I know what your next question is…. “Aren’t the pens only good for 30-ish days after you open them?” Yes, but like I said, if there is still insulin in it, I’m going to use it. One pen only gets me through about a week, which is about all the time that I need for my break. If there is some leftover for next month’s pump break, then I will use it again. If the insulin isn’t effective, then I won’t continue to use it. I will either open up another sample that I have, or, just not use any basal insulin at all.

What?

Yes, during majority of my pump breaks, I don’t actually use any basal insulin at all.

During the day, I keep a close eye on my blood sugar, but when I eat a meal, I will be sure to take what I need for the bolus, and then check again in an hour. If I determine I need more, then I will take more. Basically, I will give myself the 3.5 unit basal amount that I use per hour. During these times, my goal range is a bit higher, I am satisfied with anything under 220. I know that sounds like a crazy idea, that I would be happy with a blood sugar of 220, but remember above when I said, I’m willing to sacrifice an hour or two of a higher blood sugar in order to have sanity and not drive myself crazy having to put in another infusion set that just keeps seeming to fall out.

I do NOT recommend this for anyone. Don’t even talk to your doctor about this method. If you need to take a break from your insulin pump, then do so, but make sure you speak to your doctor about how exactly it would be best for you. Be sure to have an equation figured out to determine what your amount of Levemir or Lantus would be based on what your total daily basal usage is.

I have a tricky calculation, but it never seems to work, so I usually just use the calculation every time, then adjust the next night and then the night after that. Then when I go on the next pump break, I start off where it was working before.

How do you handle breaks from your insulin pump? I would love to hear your stories. Please share in the comments below or on Facebook.

A Pump-cation Leads to Reviewing Logging Apps

 

Does that word make you cringe too? Just when I hear it or think about it, I instantly think, “Ugh, so annoying” Even though I know in the back of my head it is worth it and the data I am going to get from it will be so much more beneficial then if I don’t do it. Why am I even bringing this up?

Last month I had a lot of vacation time with my parents then with in-laws, so there was a lot of time going in the pool and constantly being on the go. For a week, I decided that I was going to take a pump-cation also, which means no insulin pump, no CGM. So without the CGM that meant that I had no real-time data to let me know what my blood sugars were like.

I remember when I was first diagnosed, I used to like in a notebook like I was the World Blood Sugar Logging Champion. Now, I don’t even remember how I used to do it or what I used to write in that notebook.

I decided that I was just going to log them in my notes in my phone and just look over the data when I had a chance. I didn’t care to have a graph or chart or see trends, I knew I was taking a little vacation from all of that stuff. I just wanted to test, see what my number was, correct if need be, then move on and wait until the next time came, but I wanted to be able to have the info in case I needed it for some odd reason.

After that week experience I decided that I was going to start reading a bunch of reviews from others in the community about the many diabetes logging apps available. After reading a bunch, I knew that I had to just try them out myself and see which one worked the best for me.

I’m still in the process of figuring that out and reviewing a few of them myself, so I will definitely share my thoughts once I actually collect them.

What is your favorite diabetes logging app?

My Denial and Approval Process of the Minimed 530G

As some of you may know, I was offered a free trial of the Minimed 530G (Disclosure Post) and have been using it ever since. Once the trial was over, I made the decision to stay on the 530G system and the process of getting it covered by insurance was about to begin. And it was a long process.

After the first submission to UnitedHealthcare, it was denied. I received a phone call from my local Medtronic rep, as well as the marketing team at Medtronic who was working with me throughout the trial process and my endo. They all explained to me that this was a very typical response the first time around, but that they were going to submit a letter to the insurance company to get an approval the second time around.

However, the team already knew that the second claim was going to be denied as well. They explained to me that usually it takes three attempts and then after that third attempt is when it finally gets approved.

Long story short, that’s exactly how it happened.

Normally, I would have been pretty upset and irritated that every time I received a letter from UHC, it was a denial letter. But, for the fact that I already knew I would receive these denial letters, it made it a lot easier. Also, the fact that I just had to sit back and do absolutely nothing and that my healthcare team and Medtronic themselves were working for me, was pretty comforting.

After that initial denial letter, I was sent the following PDF from the Medtronic team that outline the documents needed from your healthcare professional and the appeal process and what you can do to speed up the approval process.

Download the MiniMed® 530G with Enlite® Coverage Tool Kit

Now that the process is over and the system was approved and that I have received the product in the mail is very exciting. I can’t wait to get it all set up and start using my own instead of the trial demo product.

Medtronic Customer Service

Back in January when I had the pleasure to attend the Medtronic Diabetes Advocate Forum, one of the focus areas was the Medtronic Customer Service and their StartRight program.  During the presentation, I was very excited about how much effort was being put into the Medtronic customer service team.  In the past, I have had some bad experiences with customer service.  However, Medtronic was the first medical company that actually would allow an individual rep to email me directly, and for those that know me, email is my ONLY form of communication.

When I started back up on the pump trial a couple of weeks ago, I received a phone call, voicemail and email follow up from the StartRight team to make sure that I had all of my supplies delivered, I prepared for my training and to see if I had any additional questions or concerns.  After the training occurred and I started on the pump, I received another follow up a few days later to see if there were any questions or concerns again about being on the pump or Enlite sensor.

I think that this is a great way to handle a new customer being on a product.  First, making sure that they have everything they need to get started and then provided some follow up support after they have been using the product for a few days.

Obviously, I live on social media and when I have complaints or issues that I need taken care of, I use social media to attempt to communicate with a company.  I actually prefer doing business with a company that will communicate via social or email instead of those that always just want to call and discuss things over the phone.  Have I mentioned I hate being on the phone yet?

Medtronic has been doing an amazing job with their social media customer service.  After the first few days of being on the sensor, I mentioned on Twitter that I didn’t tape the sensor down properly, so I received a reply on Twitter asking if there were any specific questions that I had, and then was provided a link to the Medtronic support page that provided more details about the taping of the sensor….perfect.

medtronic-tweet

Then, it got better the next day.  I then had an email from Medtronic titled – Additional Tape Tips.

medtronic-email

This is customization at its finest.  Although this was a pre-formulated email, it was addressed to me and made it feel customized and unique to my situation and my issues (PR companies, take note!)

The Naming of the 530G as an Artificial Pancreas

I know that I am a little late to posting my thoughts and views from the Medtronic Diabetes Advocate Forum, but better late than never.  There has been a lot of great posts and follow-ups out there to read to keep you busy.  The first topic that I wanted to touch base on was the usage of the phrase artificial pancreas and some of the backlash that Medtronic received when using that phrase for the 530G Enlite System.

When it comes to naming of things, marketing, etc. I am not too concerned with a name that is used.  I completely understand the backlash however, because of the false hope that it gives to people who hear or see the name Artificial Pancreas.  On the other hand, I am a firm believer that it is your own personal responsibility to understand the tools that you are using to manage your diabetes and to do your research.  One look at the 530G system and you would know that it’s not a true, fully closed loop artificial pancreas, but it’s a system that is helping to get closer to the end goal.

What was nice to hear was that Medtronic admitted to the mistake and also understood the backlash and made the comment that they would put more time into naming their systems.  VP of regulatory compliance, Mark McDonnell said “we’ve heard you about the term artificial pancreas”

I know that I was not alone when I say, “I don’t care what you call it, make it work and make it accurate”

I would much rather the extra time that is spent on the naming of the product to be spent on testing the accuracy.

Now, enough with the naming part of the 530G, and I encourage the debate, because I agree that the naming could be better, but also am not too upset about it.

One of the features that the 530G system utilizes to get it closer to being an artificial pancreas, is the low glucose suspend, which will suspend the pump when your blood sugar is approaching your low level that you have set up with your doctor.  This feature is great for those that go low in the middle of the night, but may not feel that they are low or do not hear the CGM beeping, vibrating or whatever other song and dance it does when you’re going low.

As somebody that doesn’t go low too often in the middle of the night, and when I do, I have had the benefit of recognizing it and being able to wake up and correct, the low suspend is not as important to me as a high glucose insulin delivery feature would be.  That is how to come closer to closing the loop and being an artificial pancreas.  Catch the spike in a BG and dose insulin as needed, but I know there are a lot of dangerous “what if’s” that come into play here, but that is where the R&D will help.

I cannot remember which Medtronic employee said this, but the comparison to a fully closed loop system and an airplane was made by saying, “Full closed loop system is like an airplane on auto pilot..there’s still a pilot there to make decisions and provide input”

The bottom line of all this discussion on the 530G and it being named an Artificial Pancreas is this. Let’s get the product where it needs to be, make it work, make it accurate, make it accessible, educate the end users and the HCP’s, and then less worry about what we should call the wonderful technology.

Asante SNAP Trial Beginning

I was approached a couple of months ago to start a trial for the Asante SNAP Insulin Pump. As you may recall, I have stopped using my Medtronic pump about 6 months ago and have been on MDI.  This will be my first time pumping since May.  I chose to wait until now to do the trial because I knew that I had my honeymoon approaching and I didn’t want to be on a trial insulin pump in another country.

In order to get started, I have to regroup and figure out all of my old pump settings as a starting point.  This is going to be a great test for the pump, because I will need to be testing my basal rates and carb ratios and sensitivity levels because I know they have changed from 6 months ago when I stopped pumping.

My training is later today, so from now until the end of the trial, you will be seeing a lot of posts, tweets, Facebook posts, Google+‘s and any other thing I use to share the info.

Wishing myself a happy pumping experience.