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Please don't shoot me.

Please remember the thoughts and opinions expressed here are solely my own, not NASA's, the American Diabetes Association's, or the cookie monster's.
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The difference between a fairy tale and a war story is the opening line. A fairy tale begins, "Once upon a time..." and a war story begins, "There I was...". As of today, my count is 2/2 for new endocrinologists offices.

But I realized something today that hit me like a brick wall. And please don't take this personally if you or someone you love has Type 2 Diabetes, but I think the increasing population of Type 2 Diabetics is exponentially decreasing the quality of care we, as Type 1 Diabetics, receive. Adult endocrinology clinics, in general, do not specialize in one strain or the other. So, as a Type 1 Diabetic I am funneled through a clinic where 9 (or more) out of every 10 patients are Type 2 Diabetics. And yesterday this fact was blatantly obvious. 

I don't think it's important to focus on the details of this visit, rather the growing need for a workable solution to the problem of adult Type 1 Diabetes clinics. My last endo, at Vanderbilt, was a hybrid - she worked in the pediatric endocrinology clinic 3 days/week, and the adult clinic 2 days/week. Presumably, she saw a high number of Type 1's in the pediatric clinic and was able to effectively care for her adult Type 1's as a result of being in practice. I never had to explain the physical devices and tools that I use to manage my disease, she never tried to convince me that a certain type of insulin works differently than how I experienced it (hey new endo lady: I'm pretty sure I'M the one taking the insulin and that I know how it affects ME and since you didn't even know that you can't fill an insulin pump reservoir from a pen, youaredeadtome), and so many other instances that let me know, as the patient, that she truly understood the disease and my management struggles as a Type 1.

There are many ways to slice this cucumber: Type 1 only clinics, Type 1 focused physicians within adult clinics, CDE-run appointments, virtual Type 1 appointments, etc.

I'm afraid as the number of Type 2's continues to rise, Type 1's will continue to be marginalized in adult endo clinics and many of us will experience moments like yesterday when we realize doing the right thing is a frustrating waste of time and money.

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Friendly public service announcement: if the doctor comes in and asks to see your pump, don't hand it over unless they are going to download it. At yesterday's appointment I made this mistake and noticed her aimlessly pushing buttons. When questioned what she was doing her reply was, "I have never seen one of these One Touch Pings before, how do you get to the settings?" As the pump was still attached to my body, I swiftly took the pump out of her hands, "If you don't know what you are doing, then you shouldn't be pushing buttons randomly that could deliver insulin." Ugh.

Comments

  1. Ugg! How frustrating! I'm afraid your dream of Type 1 only clinics will probably never happen as long as Type 2 continues to provide more of the bread and butter for doctors. But it seems like it shouldn't be too difficult to be trained in both to be considered a specialist. How frustrating for you!

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  2. Don't worry, nobody wants to shoot you! I've found it increasingly important to screen potential endos. Most everyone THINKS they know enough to treat diabetes, but unless they've dealt with the complexities of T1 they probably don't realize just how complex it is.

    I've "shopped" for doctors before looking for the word "diabetes" in their credentials (admittedly never Type 1, and once I ended up with a diabetes internist who wasn't even an endocrinologist!) but you bring up a very important point in checking for all of that. One more thing, if I may add, is that I found my current endo as a recommendation from my pump manufacturer's rep. If you already use a pump and need a skilled and up-to-date endo, I feel that's the way to go.

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  3. Not going to shoot you either. I'm a T2 who is on insulin as the T2 meds available just didn't work for me. I would like to back-up Scott's recommendation of working with your pump's manufacturer, but also check for diabetes support groups in your area. There is bound to be at least a few T1s in the group and you can ask them about the Endos in your area. Who is good, who to avoid-at-all-costs.

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  4. I love reading your blog! I came across it a few months back and you give me hope for my youngest (currently developing) T1. He's 6 and loves planes. I also have a husband who was diagnosed with T1 diabetes as an adult, and a 8 year-old daughter with T1. Both my husband and daughter use Medtronic pumps (our son isn't quite ready for insulin yet), and we actually use flexpens to fill our reservoirs. I know, crazy, right? My husband works as a supervisor for a road construction company, so the heat from the asphalt can ruin insulin fairly easily. And since no one wants to ruin 1,000 units of liquid gold, he carries flexpens. We attach the flexpen to the reservoir just like you would a vial, flip the contraption to where the reservoir is on the top and the flexpen is on the bottom (like you would for an airshot), dial up the insulin on the flexpen, and inject into the reservoir. Works like a charm! And if you do it at a moderate pace, you don't end up with bubbles! As an added bonus, in case you ever have to take an insulin injection, it's very easy to simply carry a few pen needles in your diabetes bag. :) I do think we're the only people we know that use flexpens to fill our reservoirs. Our endos were even surprised when we explained it to them. :) I also want to let you know how amazing you are for following your dreams! You give me hope for my son's future. I can't even begin to tell you how much that means! :)

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  5. Hi Candace!!! So nice to read your comment! Well, I feel like a complete tool for my words about not being able to fill a reservoir from a pen, but I'm so thankful to be schooled in this! I know diabetics can come up with some mad McGyver skills, but dang, you guys are at the top of my list!

    And thank you for your sweet words, it is really nice to hear that this little blog of mine can inspire parents and kids to push the Diabetes boundaries!

    ReplyDelete

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