tag:blogger.com,1999:blog-48235970614665903612024-03-14T06:28:31.157-04:00Type 1 Diabetes Twilight ZoneLearning, fighting and living with Type 1 Diabetes, but never surrendering. After 27 years I'm still figuring it out.Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-4823597061466590361.post-36991077402022683542021-08-24T10:30:00.000-04:002021-08-24T10:30:10.801-04:00It's Complicated: Eating with Diabetes--When Your Stomach is Broken<p> Last night I came across a Tweet from Ginger Vierira (<span style="color: inherit; font-family: inherit; font-size: inherit; font-style: inherit; font-variant-caps: inherit; white-space: inherit;">@GingerVieira) that caught my eye. I thought about it for a few minutes before responding (always a smart thing on Twitter). </span></p><p><span class="css-901oao css-16my406 r-poiln3 r-bcqeeo r-qvutc0" style="border: 0px solid black; box-sizing: border-box; caret-color: rgb(15, 20, 25); color: #0f1419; display: inline; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Helvetica, Arial, sans-serif; font-size: 23px; font-stretch: inherit; line-height: inherit; margin: 0px; min-width: 0px; padding: 0px; white-space: pre-wrap; word-wrap: break-word;">How has type 1 diabetes affected your relationship with food?
I'd like to included your answers in an article I'm working on! Feel free to reply to this tweet or send me a DM if you'd like to contribute. <3 Thank you! </span><span class="r-18u37iz" style="-webkit-box-direction: normal; -webkit-box-orient: horizontal; caret-color: rgb(15, 20, 25); color: #0f1419; flex-direction: row; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Helvetica, Arial, sans-serif; font-size: 23px; white-space: pre-wrap;"><a class="css-4rbku5 css-18t94o4 css-901oao css-16my406 r-1n1174f r-1loqt21 r-poiln3 r-bcqeeo r-qvutc0" dir="ltr" href="https://twitter.com/hashtag/t1d?src=hashtag_click" role="link" style="border: 0px solid black; box-sizing: border-box; color: #1b95e0; cursor: pointer; display: inline; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; list-style: none; margin: 0px; min-width: 0px; padding: 0px; text-align: inherit; text-decoration: none; white-space: inherit; word-wrap: break-word;">#t1d</a></span><span class="css-901oao css-16my406 r-poiln3 r-bcqeeo r-qvutc0" style="border: 0px solid black; box-sizing: border-box; caret-color: rgb(15, 20, 25); color: #0f1419; display: inline; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Helvetica, Arial, sans-serif; font-size: 23px; font-stretch: inherit; line-height: inherit; margin: 0px; min-width: 0px; padding: 0px; white-space: pre-wrap; word-wrap: break-word;"> </span><span class="r-18u37iz" style="-webkit-box-direction: normal; -webkit-box-orient: horizontal; caret-color: rgb(15, 20, 25); color: #0f1419; flex-direction: row; font-family: -apple-system, BlinkMacSystemFont, "Segoe UI", Roboto, Helvetica, Arial, sans-serif; font-size: 23px; white-space: pre-wrap;"><a class="css-4rbku5 css-18t94o4 css-901oao css-16my406 r-1n1174f r-1loqt21 r-poiln3 r-bcqeeo r-qvutc0" dir="ltr" href="https://twitter.com/hashtag/type1diabetes?src=hashtag_click" role="link" style="border: 0px solid black; box-sizing: border-box; color: #1b95e0; cursor: pointer; display: inline; font-family: inherit; font-size: inherit; font-stretch: inherit; font-style: inherit; font-variant-caps: inherit; line-height: inherit; list-style: none; margin: 0px; min-width: 0px; padding: 0px; text-align: inherit; text-decoration: none; white-space: inherit; word-wrap: break-word;">#type1diabetes</a></span></p><p>It's a complicated issue. In a nutshell, with Type 1 Diabetes (T1D) we have to calculate how many carbohydrates we eat and administer an appropriate dose of insulin. Okay, it's a lot more complex--meauring blood glucose (BG), adjusting the insulin dose to get to a target, etc. If you've done it, you know.</p><p>But her question is complex, too. Insulin is expensive as hell and more than a few people follow a diet low in carbohydrates that requires a lower dose of insulin. If you can't afford it, the obvious solution is to use as little as possible. <a href="https://www.npr.org/sections/health-shots/2018/09/01/641615877/insulins-high-cost-leads-to-lethal-rationing" target="_blank">Tragically, so-called "insulin rationing" can be deadly.</a> Too many people are forced to do that and it'll definitely affect your relationship with food.</p><p>It's long been proven that keeping blood glucose as close to normal as possible leads to fewer diabetes complications. The <a href="https://pubmed.ncbi.nlm.nih.gov/2882967/" target="_blank">Diabetes Control and Complications Trial</a>, or DCCT, was so conclusive that it was ended early so that the information could be shared promptly. Consequently there is a school of thought that the healthiest strategy is to best manage T1D a "low carbohydrate" diet is the way to go. Dr. Richard K. Bernstein is the acknowledged pioneer if this approach and it's most vocal advocate. Details, pros and cons can be found <a href="https://www.verywellhealth.com/bernsteins-diabetes-diet-overview-2241679" target="_blank">here</a>. Again, like insulin rationing, if you want (or feel the need) to follow this approach, it'll also inform your relationship to food.</p><p>There is another way of thinking about carbs and diabetes: if you know how many carbs are in a meal, and how your body utilizes insulin, then you can eat like a person without diabetes--within reason. I'll put an emphasis on "WITHIN REASON." A <a href="https://www.mcdonalds.com/us/en-us/about-our-food/nutrition-calculator.html" target="_blank">Big Mac, large fries, large strawberry shake and an apple pie has 283 grams of carbohydrate</a>--103% of the recommended daily allowance (their number, not mine). Whether you have T1D or not, that'll give your pancreas some serious pain.</p><p>But what if your stomach doesn't work right? To review 8th grade anatomy, after you swallow food it enters the stomach. Acidic digestive juices are secreted and along with the stomach contracting to mix it up, after a while it empties from the stomach and enters the small intestine. If there is a problem with how the stomach contracts, or passes it to the small intestine, you might have <a href="https://gi.org/topics/gastroparesis/" target="_blank">gastroparesis</a>. "Paralyzed stomach" is a loose translation, and <a href="https://pubmed.ncbi.nlm.nih.gov/20922192/" target="_blank">this complication affects 1 in 3 people with T1D</a>. I've been wrestling with it for over a decade and I can tell you it makes living with T1D a monumental challenge. Here's why:</p><p>When we inject (or pump) insulin at mealtime, we are counting on the predictable rate of action of insulin. We are also counting on the speed that the carbohydrates start getting converted to glucose. Done right, blood glucose will rise (it does that in people without T1D) but not too much. But with gastroparesis, the food is held in the stomach for too long, or it empties too slowly. Consequently the insulin starts working but if there isn't any of that food to work on your BG will dive. That's bad and can result in <a href="https://www.healthline.com/health/hypoglycemia" target="_blank">hypoglycemia</a>, or low BG. Normally you <a href="https://www.cdc.gov/diabetes/basics/low-blood-sugar-treatment.html" target="_blank">treat the low BG with carbs</a>, but now you have just added more carbs on top of the carbs from the meal. Guess what: your BG is going to spike, likely resulting in <a href="https://www.ncbi.nlm.nih.gov/books/NBK430900/" target="_blank">hyperglycemia</a>. The solution to that is more insulin. Welcome to the Gastroparessis Hamster Wheel.</p><p>There are dietary recommendations on how to eat with gastroparesis. The <a href="http://www.healthsystem.virginia.edu/docs/per/gastroparesis-diet-tips/handout_view_patient/@@getDocument" target="_blank">University of Virginia's guide</a> is well respected, as are <a href="https://aboutgastroparesis.org/treatments/dietary-lifestyle-measures/basic-dietary-guidelines/" target="_blank">tips from the International Federation For Functional Gastrointestinal Disorders</a> or IFFGD. Both are useful and naturally before starting this, or any diet or treatment for T1D always talk to your doctor or a <a href="https://www.diabeteseducator.org/living-with-diabetes" target="_blank">Diabetes Care and Education Specialist</a>.</p><p>So how do you manage T1D with gastroparesis, and how does that inform our relationship with food? I'll describe my experiences in future posts. In the meantime, be well and stay safe!</p>Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-37494439698684535972021-08-16T14:52:00.002-04:002021-08-16T15:04:05.246-04:00Continuing Education For Patients<p> "I don't know what I don't know." That thought crosses my mind a lot, whether it is using my computer, figuring out whether to take a class, or in managing my Type 1 Diabetes (T1D). Fortunately in the case of people with diabetes (PWD) we have a great resource ready, willing and able to help. Those professionals are your friendly, neighborhood Diabetes Care and Education Specialist. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYKOT0Rfl7yLhGICl1eYq2zt2QAQg0pg_lAJN8_11pk4_KKzSg1axnFPlSVxqrv7hFPy9WyNdqfhm72v1VLzSJ0a5Ebi8aFmoY1A_f_oSa_0EcmntP2O20sORcA562xzj5PPJlUaJk-W8/s385/NMAH-AHB2016q088944.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Blood Glucose Test Strips" border="0" data-original-height="370" data-original-width="385" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYKOT0Rfl7yLhGICl1eYq2zt2QAQg0pg_lAJN8_11pk4_KKzSg1axnFPlSVxqrv7hFPy9WyNdqfhm72v1VLzSJ0a5Ebi8aFmoY1A_f_oSa_0EcmntP2O20sORcA562xzj5PPJlUaJk-W8/w200-h193/NMAH-AHB2016q088944.jpg" title="BG Testing circa 1994." width="200" /></a></div>Let's face it: the newly diagnosed PWD gets hit with a ton of information and lifestyle changes beginning the minute they are told "you have diabetes." When it happened to me in 1994, I had to learn about mixing Regular and NPH insulin, reading a blood glucose test strip by holding it next to the strip container and comparing the colors, as well as learning all about meal exchanges. Thank God times have changed. What hasn't changed is that I was lucky to have a trained pro (called a Certified Diabetes Educator, or CDE back in the old days) to teach me in those first scary and overwhelming days. <br /><p></p><p>Now that we have rapid acting insulin, continuous glucose monitors (CGM), insulin pumps and apps to help figure out carb counting, the daily life of PWD is both easier and safer. But as tools and techniques have changed, how have we addressed growing and updating the knowledge we need to live our best diabetes life? We still have an army of trained, dedicated pros, but how are they keeping us current on best practices, tips and tricks? </p><p>In my case, somewhere along the line the "<a href="https://diabetesed.net/page/_files/THE-DIABETIC-EXCHANGE-LIST.pdf" target="_blank">Meal Exchange List</a>" got dumped and replaced with "<a href="https://www.cdc.gov/diabetes/managing/eat-well/diabetes-and-carbohydrates.html" target="_blank">Carb Counting</a>." If I recall correctly, when that change happened there wasn't a push to retrain patients that I was aware of. Somewhere along the line it came up in conversation and I got a 'down and dirty' explanation on how to count carbs and we figured out how to dose insulin with that information. </p><p>When I started using a CGM in 2005 the process was more formalized. Dexcom had training materials that my CDE and I used to learn how to use it and check my proficiency. When I moved from multiple daily injections to pump therapy (first with Medtronic and now with Tandem) a similar formula was used. For the most part, these big changes in how I manage diabetes have been big events where my DCES gave me training and checked my knowledge and skills before turning me loose.</p><p>But what about the skills and knowledge gaps that I don't know about? Usually those might be identified in an appointment with my Endocrinologist or DCES if my A1C is out of whack or CGM data uncovers an issue with lows or post-meal high blood glucose readings. I could also look at the <a href="https://www.diabeteseducator.org/living-with-diabetes" target="_blank">ADCES patient education pages</a>, and comprehensive as it is, it doesn't directly fulfill my individual needs. But what about things that aren't obvious, or that it might take a longer conversation to uncover?</p><p>Here's a thought: patients could benefit from formalized "Continuing Education" just like our professional care team does. Ideally it would leverage online skill and knowledge assessments. We all do online surveys from time to time so this isn't anything revolutionary or new. This would allow our DCES to tailor our training to address what we need without taking up precious appointment time. It would be limited to the areas pertinent to our type of diabetes, the tools we use, and the skills necessary to have a healthier life.</p><p>Would it put DCES out of business? No--if anything it would increase the number of patients they can help by making more efficient use of the time they spend with patients. Identifying their needs before they walk in the door would allow more time to be spent on teaching as opposed to assessment and then teaching. The patient and the DCES would focus on skill and confidence building within an evidence based framework. No more shooting in the dark or wondering if the patient has the knowledge they need or if an opportunity was missed.</p><p>Continuing education for patients: it is long overdue.</p><p><br /></p>Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-59276686822187051232021-08-04T13:12:00.029-04:002021-08-04T13:22:28.480-04:00Screwy A1C? Maybe its Your Kidneys...<div data-draftjs-conductor-fragment="{"blocks":[{"key":"1v297","text":"You've got an appointment with your GP or Endocrinologist coming up and they set you up for a Hemoglobin A1C test. You get it done and on the big day it is higher than you expected. Annoyed, you start thinking of how in the world was it so high when your finger sticks seemed decent or your Continuous Glucose Monitor (CGM) data looked pretty good. If you are like me, we start thinking of how we're going to explain this. Before the appointment starts you feel like your already on defense.","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"6u6mh","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"666b9","text":"To begin with, let's review what an A1C actually is. According to the CDC, it is a blood test that measures your average blood glucose over the last three months. Specifically, ","type":"unstyled","depth":0,"inlineStyleRanges":[{"offset":70,"length":3,"style":"UNDERLINE"}],"entityRanges":[{"offset":70,"length":3,"key":0}],"data":{}},{"key":"855sj","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"a575h","text":"\t\"When sugar enters your bloodstream, it attaches to hemoglobin, a protein in your red blood cells. Everybody has some sugar attached to their hemoglobin, but people with higher blood sugar levels have more. The A1C test measures the percentage of your red blood cells that have sugar-coated hemoglobin.\"","type":"unstyled","depth":0,"inlineStyleRanges":[{"offset":2,"length":302,"style":"ITALIC"}],"entityRanges":[],"data":{}},{"key":"b2t97","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"dvj0u","text":"So what does this have to do with kidneys? First, if you have Diabetes there is a 1 in 3 chance that you have Chronic Kidney Disease (CKD is a complication of diabetes more accurately called Diabetic Nephropathy). Second, if you have CKD you could also have anemia. If your kidneys are not working well, they may not be making the red blood cells your body needs. The American Kidney Fund does a great job explaining the details of anemia. If your doctor hasn't told you that you are anemic, a quick look at any of your hemoglobin tests will indicate that if the numbers are on the low end. Even if you don't have CKD, you still could have anemia. One study of 200 patients found that 22% had anemia, and of those 41% had normal kidney function and in 27% the cause could not be determined. ","type":"unstyled","depth":0,"inlineStyleRanges":[{"offset":50,"length":82,"style":"UNDERLINE"},{"offset":365,"length":75,"style":"UNDERLINE"},{"offset":649,"length":25,"style":"UNDERLINE"}],"entityRanges":[{"offset":50,"length":82,"key":1},{"offset":365,"length":75,"key":2},{"offset":649,"length":25,"key":3}],"data":{}},{"key":"6d7co","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"29o0m","text":"But what does this have to do with your A1C? Studies show that anemia has an impact on A1C, and one study cautioned that anemia should be fixed before A1C results are used to guide diabetes treatment decisions. That study has links to other published studies reinforcing the point.","type":"unstyled","depth":0,"inlineStyleRanges":[{"offset":96,"length":114,"style":"UNDERLINE"}],"entityRanges":[{"offset":96,"length":114,"key":4}],"data":{}},{"key":"2522t","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"fgt4r","text":"So as a patient, how do you explain this to your doctor when they inevitably say something like \"your A1C is too high\" or \"you need to do better at controlling your diabetes.\" Yeah--that annoys me, too and if you're going to hunt bear, bring the big guns. Last month, I had a first appointment with a new GP and knew this conversation was coming. What I did was to do a little homework beforehand.","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"cj0pg","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"at7b3","text":"First, I got the results of my most recent A1C, hemoglobin (HGB) and red blood cell (RBC) tests. On April 30, 2021 my A1C was 8.6%. Ugh! My hemoglobin on June 16, 2021 was 9.7 (normal range is 12-17 g/dL) and the RBC was 3.13 (normal is 4.2 to 5.4 M/cmm). ","type":"unstyled","depth":0,"inlineStyleRanges":[{"offset":248,"length":8,"style":"{\"FG\":\"#4f4f4f\"}"}],"entityRanges":[],"data":{}},{"key":"7o72i","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"33n7h","text":"Next, being a Dexcom CGM user I went into their Clarity online system and ran a custom report. I configured it to start on April 30 and going back 90 days so that the CGM data would match the same period the A1C was supposed to measure. I printed it out to take to the appointment. ","type":"unstyled","depth":0,"inlineStyleRanges":[{"offset":0,"length":282,"style":"{\"FG\":\"#4f4f4f\"}"}],"entityRanges":[],"data":{}},{"key":"c6m2m","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"eqroq","text":" ","type":"atomic","depth":0,"inlineStyleRanges":[],"entityRanges":[{"offset":0,"length":1,"key":5}],"data":{}},{"key":"aiavl","text":"One thing about CGM reports: I've found that a lot of my doctors are impressed with the technology and once they understand it they find it is a useful tool. A lot of specialists don't have the time to learn about it and that is where we can be our own best advocates. More than once I've carried a copy of the summary page when I thought glycemic control might be part of our conversation. By and large when I show it to them, explain how I use it to optimize control of my diabetes it helps reassure them that I am an informed partner in achieving the best possible outcomes we can achieve by working as a team.","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"bb4t3","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"dvij3","text":"I also printed out a couple of the articles listed above to give to the doctor. First to add some credibility to what I'm saying I wanted to send a signal that I'm relying on vetted, peer-reviewed information--not some Facebook charlatan. Second, with the way doctors have jammed schedules and also want to stay informed, I was trying to support him with both challenges.","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"d4ebh","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"6aha9","text":"When appointment day arrived, one of the first things the doctor said was \"you need to get your A1C down.\" I replied, \"Well doctor, I have CKD and anemia. That skews the A1C higher than what my Continuous Glucose Monitor data shows. The A1C is just one data point, but the CGM takes a measurement every 5 minutes which provides 25,920 glucose reading over the same 90 days. While my lab A1C was 8.6%, the equivalent A1C based on CGM data was 7.6%\"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"8se68","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"1n05f","text":"I didn't bother explaining the virtues of Time In Range (the emerging gold standard of glycemic control) or standard deviation or other statistics. Our time together is limited and my role is the patient getting care and not an educator. But in the end, I made my case, got the care I needed (for the most part) and hopefully impressed my doctor with the impression that I was an informed partner.","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"1f36b","text":"","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"c52qs","text":"I hope this is helpful and that you don't need to actually need to use this.","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"52ovj","text":"Kindest regards,","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}},{"key":"7jrbh","text":"-Tom","type":"unstyled","depth":0,"inlineStyleRanges":[],"entityRanges":[],"data":{}}],"entityMap":{"0":{"type":"LINK","mutability":"MUTABLE","data":{"url":"https://www.cdc.gov/diabetes/managing/managing-blood-sugar/a1c.html","target":"_blank","rel":""}},"1":{"type":"LINK","mutability":"MUTABLE","data":{"url":"https://www.cdc.gov/diabetes/managing/diabetes-kidney-disease.html","target":"_blank","rel":""}},"2":{"type":"LINK","mutability":"MUTABLE","data":{"url":"https://www.kidneyfund.org/anemia/#how_does_ckd_cause_anemia","target":"_blank","rel":""}},"3":{"type":"LINK","mutability":"MUTABLE","data":{"url":"https://ashpublications.org/blood/article/126/23/4545/93585/The-Prevalence-of-Anemia-in-Diabetic-Patients-with","target":"_blank","rel":""}},"4":{"type":"LINK","mutability":"MUTABLE","data":{"url":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7336595/","target":"_blank","rel":""}},"5":{"type":"wix-draft-plugin-image","mutability":"IMMUTABLE","data":{"config":{"alignment":"center","size":"content","showTitle":true,"showDescription":true,"disableExpand":false},"disableExpand":false,"src":{"id":"4674f5_d6cf6370e03c45dab89e0520594924cd~mv2.jpg","height":912,"width":1877,"original_file_name":"Screen Shot 2021-07-28 at 12.03_edited.jpg","file_name":"4674f5_d6cf6370e03c45dab89e0520594924cd~mv2.jpg"}}}},"VERSION":"8.46.0"}" style="white-space: pre-wrap;"><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="foo-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="foo-0-0"><span data-offset-key="foo-0-0">You've got an appointment with your GP or Endocrinologist coming up and they set you up for a Hemoglobin A1C test. You get it done and on the big day it is higher than you expected. Annoyed, you start thinking of how in the world was it so high when your finger sticks seemed decent or your Continuous Glucose Monitor (CGM) data looked pretty good. If you are like me, we start thinking of how we're going to explain this. Before the appointment starts you feel like your already on defense.</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="80bek-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="80bek-0-0"><span data-offset-key="80bek-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="dl0hd-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="dl0hd-0-0"><span data-offset-key="dl0hd-0-0">To begin with, let's review what an A1C actually is. According to the </span><a class="_2qJYG _2E8wo" href="https://www.cdc.gov/diabetes/managing/managing-blood-sugar/a1c.html" rel="noopener noreferrer" target="_blank"><span data-offset-key="dl0hd-1-0">CDC</span></a><span data-offset-key="dl0hd-2-0">, it is a blood test that measures your average blood glucose over the last three months. Specifically, </span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="5haq9-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="5haq9-0-0"><span data-offset-key="5haq9-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="7cmeu-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="7cmeu-0-0"><span data-offset-key="7cmeu-0-0"> "</span><span data-offset-key="7cmeu-0-1" style="font-style: italic;">When sugar enters your bloodstream, it attaches to hemoglobin, a protein in your red blood cells. Everybody has some sugar attached to their hemoglobin, but people with higher blood sugar levels have more. The A1C test measures the percentage of your red blood cells that have sugar-coated hemoglobin."</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="fs6cv-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="fs6cv-0-0"><span data-offset-key="fs6cv-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="2496i-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="2496i-0-0"><span data-offset-key="2496i-0-0">So what does this have to do with kidneys? First, </span><a class="_2qJYG _2E8wo" href="https://www.cdc.gov/diabetes/managing/diabetes-kidney-disease.html" rel="noopener noreferrer" target="_blank"><span data-offset-key="2496i-1-0">if you have Diabetes there is a 1 in 3 chance that you have Chronic Kidney Disease</span></a><span data-offset-key="2496i-2-0"> (CKD is a complication of diabetes more accurately called Diabetic Nephropathy). Second, if you have CKD you could also have anemia. If your kidneys are not working well, they may not be making the red blood cells your body needs. </span><a class="_2qJYG _2E8wo" href="https://www.kidneyfund.org/anemia/#how_does_ckd_cause_anemia" rel="noopener noreferrer" target="_blank"><span data-offset-key="2496i-3-0">The American Kidney Fund does a great job explaining the details of anemia.</span></a><span data-offset-key="2496i-4-0"> If your doctor hasn't told you that you are anemic, a quick look at any of your hemoglobin tests will indicate that if the numbers are on the low end. Even if you don't have CKD, you still could have anemia. </span><a class="_2qJYG _2E8wo" href="https://ashpublications.org/blood/article/126/23/4545/93585/The-Prevalence-of-Anemia-in-Diabetic-Patients-with" rel="noopener noreferrer" target="_blank"><span data-offset-key="2496i-5-0">One study of 200 patients</span></a><span data-offset-key="2496i-6-0"> found that 22% had anemia, and of those 41% had normal kidney function and in 27% the cause could not be determined. </span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="cnh6j-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="cnh6j-0-0"><span data-offset-key="cnh6j-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="332n4-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="332n4-0-0"><span data-offset-key="332n4-0-0">But what does this have to do with your A1C? Studies show that anemia has an impact on A1C, and </span><a class="_2qJYG _2E8wo" href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7336595/" rel="noopener noreferrer" target="_blank"><span data-offset-key="332n4-1-0">one study cautioned that anemia should be fixed before A1C results are used to guide diabetes treatment decisions.</span></a><span data-offset-key="332n4-2-0"> That study has links to other published studies reinforcing the point.</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="2psue-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="2psue-0-0"><span data-offset-key="2psue-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="datk6-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="datk6-0-0"><span data-offset-key="datk6-0-0">So as a patient, how do you explain this to your doctor when they inevitably say something like "your A1C is too high" or "you need to do better at controlling your diabetes." Yeah--that annoys me, too and if you're going to hunt bear, bring the big guns. Last month, I had a first appointment with a new GP and knew this conversation was coming. What I did was to do a little homework beforehand.</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="5r0to-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="5r0to-0-0"><span data-offset-key="5r0to-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="9pr0q-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="9pr0q-0-0"><span data-offset-key="9pr0q-0-0">First, I got the results of my most recent A1C, hemoglobin (HGB) and red blood cell (RBC) tests. On April 30, 2021 my A1C was 8.6%. Ugh! My hemoglobin on June 16, 2021 was 9.7 (normal range is 12-17 g/dL) and the RBC was 3.13 (normal is 4.2 to 5.4 </span><span data-offset-key="9pr0q-0-1" style="color: #4f4f4f;">M/cmm). </span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="4pu0g-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="4pu0g-0-0"><span data-offset-key="4pu0g-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="3p408-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="3p408-0-0"><span data-offset-key="3p408-0-0" style="color: #4f4f4f;">Next, being a Dexcom CGM user I went into their Clarity online system and ran a custom report. I configured it to start on April 30 and going back 90 days so that the CGM data would match the same period the A1C was supposed to measure. I printed it out to take to the appointment. </span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="7ns2o-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="7ns2o-0-0"><span data-offset-key="7ns2o-0-0"><br data-text="true" /></span></div></div><figure class="_3Ecss _2xaV9" data-block="true" data-editor="editor" data-offset-key="964ri-0-0"><div class="_1UlcP _3PaWO _2PdJ9 _1O2_H _3L9s_ _3MfUJ f3bms4w _32sdV undefined _20u8Q" data-focus="true" role="none" style="cursor: default; position: relative;" width="20"><div class="_2o-_D" data-hook="imageViewer" role="button" tabindex="0"><div class="_3lvoN f3bms4w"><img class="_5JW6l _36UM9" height="226" src="https://static.wixstatic.com/media/4674f5_d6cf6370e03c45dab89e0520594924cd~mv2.jpg/v1/fill/w_1480,h_719,al_c,q_90/4674f5_d6cf6370e03c45dab89e0520594924cd~mv2.webp" style="opacity: 1;" width="467" /></div><div></div><div></div></div><div class="_34x7u" data-hook="componentOverlay" draggable="true" role="none"></div></div></figure><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="cb9l4-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="cb9l4-0-0"><span data-offset-key="cb9l4-0-0">One thing about CGM reports: I've found that a lot of my doctors are impressed with the technology and once they understand it they find it is a useful tool. A lot of specialists don't have the time to learn about it and that is where we can be our own best advocates. More than once I've carried a copy of the summary page when I thought glycemic control might be part of our conversation. By and large when I show it to them, explain how I use it to optimize control of my diabetes it helps reassure them that I am an informed partner in achieving the best possible outcomes we can achieve by working as a team.</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="atbe0-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="atbe0-0-0"><span data-offset-key="atbe0-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="8kc7a-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="8kc7a-0-0"><span data-offset-key="8kc7a-0-0">I also printed out a couple of the articles listed above to give to the doctor. First to add some credibility to what I'm saying I wanted to send a signal that I'm relying on vetted, peer-reviewed information--not some Facebook charlatan. Second, with the way doctors have jammed schedules and also want to stay informed, I was trying to support him with both challenges.</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="7v8ad-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="7v8ad-0-0"><span data-offset-key="7v8ad-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="dkc3t-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="dkc3t-0-0"><span data-offset-key="dkc3t-0-0">When appointment day arrived, one of the first things the doctor said was "you need to get your A1C down." I replied, "Well doctor, I have CKD and anemia. That skews the A1C higher than what my Continuous Glucose Monitor data shows. The A1C is just one data point, but the CGM takes a measurement every 5 minutes which provides 25,920 glucose reading over the same 90 days. While my lab A1C was 8.6%, the equivalent A1C based on CGM data was 7.6%"</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="dcohr-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="dcohr-0-0"><span data-offset-key="dcohr-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="e9q56-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="e9q56-0-0"><span data-offset-key="e9q56-0-0">I didn't bother explaining the virtues of Time In Range (the emerging gold standard of glycemic control) or standard deviation or other statistics. Our time together is limited and my role is the patient getting care and not an educator. But in the end, I made my case, got the care I needed (for the most part) and hopefully impressed my doctor with the impression that I was an informed partner.</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="8hsjl-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="8hsjl-0-0"><span data-offset-key="8hsjl-0-0"><br data-text="true" /></span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="5l5b4-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="5l5b4-0-0"><span data-offset-key="5l5b4-0-0">I hope this is helpful and that you don't need to actually need to use this.</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="st6e-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="st6e-0-0"><span data-offset-key="st6e-0-0">Kindest regards,</span></div></div><div class="jwLWP _2hXa7 Zn7O0 public-DraftStyleDefault-block-depth0 public-DraftStyleDefault-text-ltr" data-block="true" data-editor="editor" data-offset-key="a5hcn-0-0"><div class="public-DraftStyleDefault-block public-DraftStyleDefault-ltr" data-offset-key="a5hcn-0-0"><span data-offset-key="a5hcn-0-0">-Tom</span></div></div></div>Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-25630827896039866152018-02-22T10:51:00.002-05:002018-02-22T10:52:39.391-05:00Coaching in Type 1 Diabetes: A Patient's PerspectiveOne of my "Twitter Buddies" is a Certified Diabetes Educator who is working on an advanced degree. On Twitter she asked the question, "Okay, working on a school discussion. No better people to ask them those with DM themselves: What's your favorite coaching strategy from your HCP to help you prevent complications? #DSMA" Since my answer would run longer than 280 characters, here goes.<br />
<br />
I essentially have two distinct health care teams. My primary care provider is a GP who treats veterans in the Veterans Affairs healthcare system. That patient population likely has fewer people with Type 1 Diabetes than a more diverse population than those seen by a GP in private practice. He generally helps me with regular health concerns. When it comes to Diabetes, he generally defers to my Endocrinologist while at the same time helping me get care for some of the Diabetes-related issues.<br />
<br />
The other part of my team is led by my Endocrinologist who divides her time between the VA and work in a teaching hospital. This gives her intimate familiarity and experience at helping me manage the nuances of Type 1 Diabetes.<br />
<br />
When I first met my PCP several years ago, he reviewed my electronic health record and said, "You need to get your A1C down." This is something I already knew going back to 1994 when I was diagnosed and shortly after the <a href="http://www.nejm.org/doi/full/10.1056/NEJM199309303291401" target="_blank">Diabetes Control and Complications Trial </a>was published. That trial basically said there is a definitive scientific basis for the notion than lower blood glucose levels result in a lower incidence of common complications arising from Diabetes. What my PCP was saying was something I already knew, was something I was working hard to accomplish on a daily basis, but because of challenges from other complication it was something I was unable to do.<br />
<br />
I told him something along the lines of "I've read the DCCT, I know what it says, and my Endocrinologist and I are working real hard at optimizing my A1C. However, between <a href="https://www.niddk.nih.gov/health-information/digestive-diseases/gastroparesis" target="_blank">gastroparesis</a>, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4499525/" target="_blank">hypoglycemia unawareness</a>, <a href="https://clindiabetesendo.biomedcentral.com/articles/10.1186/s40842-015-0001-9" target="_blank">impaired kidney function impacts on insulin efficacy</a> and despite frequent blood glucose monitoring, use of a Continuous Glucose Monitor and the most advanced insulin pump available to me, this is (for now) as good as it gets." What I was communicating was that I am aware of the importance of lowering my A1C, but am also knowledgeable about my illness and the various factors in my particular situation that make this goal challenging. I also said, "What I need help with from you is in managing these variables." I was asking for his expertise and experience and showing him that I was going to be cooperative and willing to do my part with helpful guidance from him. Just saying "You need to lower your A1C" was simple but not helpful - what I was looking for was concrete, actionable and realistic tools and tips to meet that objective. So far, with that common outlook in place, this relationship has worked out pretty well.<br />
<br />
With my Endocrinologist, the coaching relationship is a bit different. I am fortunate that our relationship is (as I see it) a fully collaborative partnership. As we discuss my case, we take into account clinical best practices and work them into realistic lifestyle choices that will most safely lead to optimal glycemic control. She is in close contact with my gastroenterologist, nephrologist and cardiologist as well as my PCP - the idea being that she stays informed about the other issues having a bearing on my Diabetes management.<br />
<br />
While my healthcare team helps "Coach" me to be as healthy and happy as I can be with all of these challenging conditions, I believe that just like an athlete, coaching can only do so much - the actual performance is up to me.Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-31691879808395780342017-05-14T16:18:00.000-04:002017-05-14T16:18:03.031-04:00Advocating for Affordable Insulin: Thinking Outside The Box
<div>
</div>
There is no issue of greater concern for people with Type 1 Diabetes than
the rising cost of insulin. From Washington to your local pharmacy, people are
furious, frustrated and scared. While some turn to social media to vent their
anger and advocate for change, others look to Congress for a solution. The
former might make folks feel like they are doing something (and feel better in
the process). Traditional media (newspapers and TV news) have also covered the
issue of the exorbitant cost of insulin. In addition, the President and some in
Congress have said that out of control drug pricing is a problem that needs to
be solved, but beside posturing, there has not been any substantive legislation
introduced that could realistically be enacted. <br />
<div>
</div>
In other words, there is a lot of 'buzz' about the issue. Other than a
lawsuit alleging price fixing and collusion between the three major insulin
manufacturers, there aren't any prospects of a solution anywhere on the
horizon.<br />
<div>
</div>
So what is the solution?<br />
<div>
</div>
Each of the three major insulin manufacturers (<a href="http://www.lillydiabetes.com/" target="_blank"><span style="color: blue;">Eli
Lilly</span></a>, <a href="http://en.sanofi.com/healthcare-solutions/diabetes/diabetes.aspx" target="_blank"><span style="color: blue;">Sanofi</span></a> and <a href="http://www.novonordisk-us.com/patients/products/diabetes.html" target="_blank"><span style="color: blue;">Novo Nordisk</span></a>) are publicly traded
corporations. They view their primary obligation to provide value to their
shareholders. Love it or hate it, that is why they exist.<br />
<div>
</div>
Since they are focused on pleasing their shareholders, we could look at
reaching equity owners as to get these corporations to manage insulin
pricing differently. Sanofi currently has 2.584 billion shares trading at
$49.21 each. Novo has 1.96 billion shares trading at $40.60 each. Lilly is
priced at $80.19 per share, and with 1.103 billion shares outstanding has the
lowest market cap of the three at $88,500,000,000. Unless you are Warren Buffet
or Bill Gates and you put all your money into just one of these, you don't have
the financial horsepower to bend them to your will. Scratch that idea.<br />
<div>
</div>
Who sets insulin prices in the first place? Most likely it is a team of
financial and managerial accountants who consider cost data, sales forecasts
and guidance from senior management among other considerations. After crunching
the numbers they arrive at a figure, it is approved by the executive(s)
empowered with that authority, and then put into place. As conditions
change, that price will be evaluated and the process repeats. But if they
arbitrarily drop the price, revenue will fall and the bean counters will have
to make it up somewhere else in order to (as always) keep investors
satisfied.<br />
<div>
</div>
Maybe appealing to the Chairman or CEO would work, right? If we leaned on
him hard enough, couldn’t he just say 'the hell with it - we need to make
insulin more affordable, so we are dropping the price to $X.XX per vial.' Well,
no - for a couple of reasons. Like the bean counters, they are responsible for
keeping the shareholders happy by maintaining optimal profitability. Secondly, making
one group of customers happy would probably infuriate other customers. Dropping
the cost for patients with diabetes would mean raising prices on products used
by other patients. Placate the second group and the process is repeated ad
nauseum. One thing Chairmen/CEOs avoid like the plague is unnecessary turmoil. Annoying
customers and investors isn’t part of their job description. Which of us goes
out of our way to jeopardize our livelihood - especially for a constituency
that will likely be unsatisfied and won't do anything for us? Finally, they get
paid to take heat when it comes, and part of that is weathering a storm – like insulin
prices.<br />
<div>
</div>
So who can get things done? The Board of Directors. They set the strategic
direction of the corporation. As long as shareholders are generally happy,
directors are empowered to do almost anything they want. By and large they
have pretty wide latitude. Normally a Board wouldn't get so far into the weeds
as setting prices for a product, but if there is enough pressure on them to get
involved, they just might. Also, they aren’t the public face of the
corporation. Nobody raises hell with them, so what a Chairman/CEO might brush
off as part of their job might be enough to get a Director to ask hard
questions. The kind of questions that a Chairman/CEO and his subordinates would
have to answer. <br />
<div>
</div>
Here would be my plan of attack:<br />
<div>
</div>
I’d go after the Directors of Lilly. Sanofi and Novo Nordisk are
multinational corporations that are headquartered overseas. They’d be less
vulnerable to public heat in America than Lilly would be.<br />
<div>
</div>
I’d look at their <a href="https://www.lilly.com/who-we-are/governance/board-of-directors"><span style="color: blue;">Board of
Directors</span></a> and their biographies. Which would be most likely influenced by
the stories of patients who could not afford insulin? Maybe those with a
healthcare background – particularly in patient care? <br />
<div>
</div>
I’d look at the <a href="https://www.lilly.com/who-we-are/governance"><span style="color: blue;">members
of the Public Policy and Compliance Committee</span></a>. Part of their charter is to “…<a href="https://assets.contentful.com/hadumfdtzsru/oYlerQocI8K6q4Ucu660o/72dbdf583f33b31f3e1d2fe0a1cdcaf6/2016_12_12PPCC_Charter.pdf"><span style="color: blue;">review,
identify and when appropriate bring to the attention of the board political,
social and legal trends and issues, and compliance and quality matters that may
have an impact on the business operations, financial performance or public
image of the company.</span></a>”<br />
<div>
</div>
I’d get the contact information for each of the directors I was going to
contact. Google is your friend.<br />
<div>
</div>
I’d send each of them a one page letter. They are more personal. They are
not as easily dismissed as an email. They are not missed like a tweet (assuming
some of them are on Twitter). <br />
<div>
</div>
Here is what I would say:<br />
<ul>
<li>I’d tell my story. </li>
<li>I’d identify myself as a customer. </li>
<li>I’d tell them my very life depends on their product. </li>
<li>I’d tell them how much I pay for their product, on top of my insurance premiums and co-pay. </li>
<li>I’d tell them what I cannot do for my family or myself because of how expensive their medicine is. I’d ask them how they would deal with these challenges if they were in my shoes. </li>
<li>I’d tell them what I think is a reasonable profit for insulin. </li>
<li>I’d ask them to contact me and tell me how they will make insulin affordable, when they will do it, and what they’ll do to keep it that way.</li>
</ul>
<div>
</div>
Most of all, I’d share that with other people with diabetes. I’d tell them
what I did, who I contacted, what I said and I’d encourage them to do the same.
<br />
<div>
</div>
Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com2tag:blogger.com,1999:blog-4823597061466590361.post-29309393643122599782017-04-30T15:02:00.002-04:002017-04-30T15:02:17.431-04:00Why Insulin Pumps Work Well With GastroparesisIn a Facebook group for people with gastroparesis, a member with that and Type 1 Diabetes said that he'd been hospitalized a couple of times and that his doctor recommended that he should start using an insulin pump.<br />
<br />
Gastroparesis is a complication of Diabetes where the stomach does not digest food properly. Most usually it means that the stomach does not move food along the digestive system as rapidly as a healthy stomach. Rather, for unknown reasons the food often just "sits there." One of the symptoms is excessive fullness (picture Thanksgiving afternoon but you only had a cup of yogurt). Others include pain, cramping, nausea and vomiting. The culprit is believed to be having had high blood glucose levels for an extended period of time, though other causes are being investigated.<br />
<br />
On top of the nasty symptoms, gastroparesis makes controlling Diabetes challenging, if not impossible. I pointedly asked my Gastroenterologist what I needed to do to minimize the symptoms of gastroparesis. She said, "Get your A1C down and it will get better and possibly become unnoticeable." I passed that along to my Endocrinologist to get her advice on how to do that. She said that gastroparesis made it difficult, if not even dangerous to try and lower my A1C. Lovely. <br />
<br />
For the uninitiated, here is how a person with diabetes normally uses insulin to control blood glucose. Before they consume a meal, they will measure their blood glucose. If it is above their target, they have to figure out how much insulin to inject to get it back to the desire range. Then, they count how many grams of carbohydrates are in the meal. Once it is eaten, those carbs convert to glucose and enter the bloodstream. To counteract that rise in glucose, an individualized formula is used to determine how much insulin will be necessary. They will add those two doses and inject the insulin about the time the meal is served. Once injected, the insulin "peaks" at around one hour, then the amount in the person's system falls off gradually, disappearing completely after a few hours. This "rate of action" is designed to mimic how a person's blood glucose will rise shortly after a meal and then tail off. If the stomach is functioning properly and the person gets the calculations right, things often work out nicely.<br />
<br />
Not so with Gastroparesis. Delayed or impaired stomach emptying screws up this delicate balancing act. Say a person is about to have a meal. They measure their BG, calculate the insulin correction. They count the carbohydrates in their meal, determine how much insulin to take for the meal, then add the two doses. They do the injection and have their meal. But since the food could sit for hours in their stomach, the insulin will take effect when their isn't an increase in the BG. As a result, their BG could drop to dangerously low levels. The person then would have to take some glucose to get it back to a safe level. But after wrestling with that, the food finally starts to digest and the carbs in the meal are converted to glucose and enter the bloodstream. Now the BG rises (in my case as many as 5 or 6 hours after a meal) but there isn't any of the insulin that was injected before the meal left to push the BG back down. Now the BG is too high, and the patient has to decide whether to ride it out or to inject some extra insulin to get the BG to where it ought to be.<br />
<br />
That is how it works when using traditional shots. You could divide up the meal bolus and give yourself a couple of small shots over time, but that is unwieldy, somewhat complicated and impractical.<br />
<br />
I use a <a href="https://www.medtronicdiabetes.com/products/minimed-530g-diabetes-system-with-enlite" target="_blank">Medtronic 530g Insulin Pump</a>. It has there are several features that allow me to tailor how much insulin is delivered and when. One option is to use a "square wave bolus." This delivers the insulin at a constant rate over a user selected time period. If I was eating a meal over a long duration (say a working dinner in a restaurant) and didn't need a correction, I'd use this. If a correction was needed, I would use a "dual wave bolus." With this, you get a user selected amount of insulin immediately and the remainder is delivered over time just like the "square wave bolus." You can also add some insulin to come on the front end on top of the correction bolus and the remainder later. After much trial and error, this is what I do. Most of the time it works fairly well, but not always. If a meal is particularly heavy, I might stretch out the length of the bolus from my typical one hour to an hour and a half or even two hours. If it is light and easily digested (like a can of Ensure) then I might decrease the time period, or shift more of the insulin to the beginning of the bolus.<br />
<br />
To answer the gentleman's question of whether an insulin pump is the way to go for managing Type 1 Diabetes with gastroparesis, I'd unhesitatingly say that for many people it is. While more costly than shots, and somewhat more complicated, those drawbacks are more than offset by the flexibility it offers in dealing with a challenging and complex set of circumstances. If available to him, I'd enthusiastically encourage him to give it a try. It has made a real difference for me and given the current state of technology in diabetes management, this is the only way to go.<br />
<br />Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com2tag:blogger.com,1999:blog-4823597061466590361.post-43579620500131417152017-04-11T14:10:00.000-04:002017-04-11T14:34:41.936-04:00New NC Bill Could Get People With Diabetes Off The RoadIf you have diabetes and have an accident, you could lose your drivers license if a bill being introduced in North Carolina becomes law. <a href="http://ncleg.net/gascripts/BillLookUp/BillLookUp.pl?Session=2017&BillID=H653" target="_blank">House Bill 653</a> would require reporting if a driver with diabetes had a 'diabetic coma' and was involved in an auto accident. It would mandate a temporary, and potentially permanent loss of a drivers license. It does not include similar consequences for other drivers with recognized medical conditions that could hamper safe driving.<br />
<br />
For people with diabetes in North Carolina, getting a drivers license is no easy feat. According to the NC DMV website, "If you suffer from a mental or physical disability that might affect driving safety, a license may not be issued.
A disabled person may be issued a restricted license provided the disability does not keep him/her from driving safely" The process for getting a license requires when an applicant has a medical condition that might impact safe operation of a motor vehicle is spelled out in the DMV's "<a href="https://www.ncdot.gov/download/dmv/MedicalEvaluationBrochure.pdf" target="_blank">Medical Evalution Brochure.</a>" In addition to diabetes, it lists 11 other general and specific conditions that the DMV wants to know about.<br />
<br />
If one of those conditions is <a href="https://www.ncdot.gov/download/dmv/MedicalRequest.pdf" target="_blank">reported to DMV </a>by a physician, family member, or law enforcement official, the driver can be required to fill out a "<a href="https://www.ncdot.gov/download/dmv/DL78MedicalReportForm.pdf" target="_blank">Medical Report Form</a>" and have their physician provide their observations. There is then a hearing to decide whether or not that person will be allowed to drive. If they don't like the answer, they can appeal. They can also put in a <a href="https://www.ncdot.gov/download/dmv/removal_request_form_DL-79.pdf" target="_blank">request to be removed from the program</a>. Like most things DMV, it is amorphous, tedious and annoying.<br />
<br />
But the new legislation being introduced makes keeping a license harder, is discriminatory and fatally flawed it its underlying premise. If you have a wreck and somebody figures out you have diabetes, you could be put into that program. While that process is going on (for weeks or months) you cannot drive. The proposed law is also discriminatory since it only applies to people with diabetes and epilepsy - leaving out many other conditions that could make a driver potentially unsafe. Finally, where it pertains to diabetes, it singles out drivers suspected of having an accident caused by "<a href="https://en.wikipedia.org/wiki/Diabetic_coma" target="_blank">diabetic coma</a>" - an inexact phrase generally referring to extremely high or low blood glucose. In most respects, many symptoms occur long before coma is experienced - most of which would make driving impossible long before an accident could happen.<br />
<br />
To fix this bill, several possible things should happen.<br />
<ul>
<li>It should be killed in committee. </li>
<li>All of the other conditions that are addressed in the North Carolina Drivers Medical Evaluation Program should be included in the interest of fairness, efficacy to the intent of the bill, and to ensure consistency throughout the program. </li>
<li>Table the bill and instead create a Legislative Study Commission to ensure that the intended result is achievable, done equitably and protects both individuals with disabilities and the general public. </li>
<li>Delete the term 'diabetic coma' and instead place language that is medically justifiable, objectively determined and supports the reality that diabetes effects different people in different way.</li>
<li>Delete language that arbitrarily suspends driving privileges prior to the completion of the administrative process. Such a suspension should only be allowable if there is clear and convincing evidence provided by a licensed physician that clearly states a driver cannot at any time safely operate a motor vehicle. </li>
<li>Allowance should be made for the fact that blood glucose levels may make driving unsafe at one moment and as safe as any other driver in a matter of minutes.</li>
<li>Require that evaluations for driver fitness be covered by Medicaid.</li>
</ul>
On a poersonal note: I can assure you from personal experienced that having an automobile accident while in a 'diabetic coma' is next to impossible. I've been in three 'diabetic comas' and it is hard to drive a car when you are unconscious in an Intensive Care Unit. <br />
<h3>
</h3>
<h3>
CALL TO ACTION</h3>
<br />
1. <a href="http://ncleg.net/representation/WhoRepresentsMe.aspx" target="_blank">Find your legislator</a> and encourage them to NOT sign on as a co-sponsor of this bill. Doing so would indicate support of legislation that further marginalizes people with diabetes and in a way that will not accomplish the goal of safer roadways that this legislation intends.<br />
<br />
2. Reach out to other people with diabetes in NC. Make them aware of this legislation, how it could affect them and encourage them to reach out to their legislator.<br />
<br />
3. Periodically check the bill status. When it is scheduled to come up before a committee, consider going to that meeting to personally express your opposition. That carries a lot of weigh with legislators, and is the easiest way to get a bill either changed or killed outright.<br />
<br />
<h3>
LEGISLATION DETAILS</h3>
<br />
Entitled "Report/Car Accident Caused by Seizure or Coma," <a href="http://www.ncleg.net/gascripts/BillLookUp/BillLookUp.pl?Session=2017&BillID=h653" target="_blank">HB 653</a> would require that any automobile accident that was caused as the result of a driver suffering from a 'diabetic coma' must be reported. It further requires that the DMV "shall evaluate whether the medical condition affects the driver's ability to safely operate a motor vehicle and SUSPEND THE DRIVERS LICENSE OF THE DRIVER PENDING COMPLETION OF THE EVALUATION." (emphasis added). The proposed legislation goes of to state that, "If the Division determines that the medial condition does not affect the driver's ability to safely operate a motor vehicle, the Division shall restore the drivers license of the driver at no cost to the driver. If the Division determines that the medical condition does affect the driver's ability to safely operate a motor vehicle, the Division shall cancel the drivers license of the driver in accordance with G.S. 20-15(a)(4). Upon cancellation, the driver may appeal the decision of the Division or seek issuance of a new restricted or unrestricted driver's license, in accordance with the process set forth in G.S. 20-9(g)." Finally, "reports under this section made by law enforcement officers and medical examiners are public records and are open to inspection by the general public at all reasonable times."<br />
<br />
<br />Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-33815459940317274152017-03-16T09:16:00.000-04:002017-03-16T09:16:03.321-04:00Simple Tips for Coping With Diabetes"How do you eat a whale? One bite at a time."<br />
<br />
That is what a wise old Army First Sergeant told me once when we were getting hit with a hundred tasks at once, each more important than the last. In the 12,186,720 minutes that I've had Type 1 Diabetes, that advice has come to mind more than once.<br />
<br />
We know that dealing with this is a 24/7/365 proposition. Even when we are asleep, it can still wake us up and demand our attention. Most of the time, we are on our own. If we get an hour to talk diabetes with a doctor every 3 months, that amounts to 0.046% of each year. If we are lucky, we get as much training in managing diabetes as we would if we took a CPR class. In other words, we get to mange and be held accountable (by doctors, family and friends) for mechanically managing a complex biochemical process with potentially deadly drugs using inexact tools and relying on minimal training. Oh yeah - there is no end in sight, and no reward for winning.<br />
<br />
It's no wonder that this gets us stressed out and overwhelmed from time to time. We all have days where everything works perfectly. More likely that insulin bolus is as effective as a shot of water, the carb data we use came from a practical joker, or our blood glucose meter spits out numbers that came from a lottery number generator. In other words, we do our part right but it doesn't work. All of those failures - one after the other - can destroy our confidence (a critical thing we need when trying to stay on top of a potentially deadly disease).<br />
<br />
I've been playing the D game for 23 years. I've had ups and downs, and more than once I've wanted to throw in the towel. But we don't have that luxury. Like another friend said, "you don't have to like it, you just have to deal with it." Here's how I try to keep things on an even keel and to keep a sense of calm in the process.<br />
<br />
<ul>
<li><b>Don't beat yourself up over the past. </b>Learn from it if you can, but if your carb count was off, your bolus didn't work or that correction didn't budge your BG one iota - forget it. You can't change it - it's over. If you had a 12 hour run between 110 and 115, celebrate. Use that to leverage your confidence. Learn from the bad, celebrate the good and move on.</li>
</ul>
<ul>
<li><b>Focus on today.</b> You know what you need to do: do it right. Test before and after meals, before driving and when you feel off. Use the best available data for carb counts. Get the insulin going in a good location and on time. Every time you do something D related, do the best you can with the use of all the experience and judgement that you've accumulated in your D journey. I talk to myself silently as if I were explaining what I was doing and why to my endocrinologist or to somebody I was trying to teach. Today is the focus. If I give it my best effort, that is the best I can do. When my A1C results come back, I'll know that every day I gave it 100% and I'll be pleased with that, regardless of the number.</li>
</ul>
<ul>
<li><b>Don't sweat tomorrow.</b> If you think about how many carb counts, finger sticks, boluses and corrections that you will have to do in the next 5, 10 or 20 years (or until there is a cure) it will overwhelm you. When I was a little kid, I watched my mom take a thyroid pill. I asked her how long she would have to do that and when she said "for the rest of my life" I was freaked out. I couldn't imagine that. The same goes with my own diabetes. <a href="http://www.thomasgoffe.com/type-i-diabetes/diabetes-by-the-numbers" target="_blank">One time I counted all the shots, fingersticks, etc. that I'd done</a>. While the numbers were impressive and I thought I was one hell of a guy for having done all of that, it also made me think of what they might be a few years from now. Not good. Instead of worrying about that, I figure if I work hard today, tomorrow will take care of itself. </li>
</ul>
<ul>
<li><b>Help each other. </b>Somewhere, somebody is out there who has been where you are now. Reach out - you'll be surprised how many people like you are willing to help. Likewise, you have wisdom that might help others. (That is why I write some of these things.) Twitter, Facebook and some online communities are great places to find those folks. There may be groups in your community as well. Keep your eyes and ears open - help and support might be just around the corner.</li>
</ul>
<br />
In a nutshell, diabetes can play hell with you psychologically, but it doesn't have to be that way. Do your best now and don't think about yesterday or tomorrow. Easy to say, but hard to do. But just like trying your best today with managing your diabetes, handling the mental part works the same way. Do your best, forgive yourself when needed and keep working at it.<br />
<br />
<h3>
You can do this!</h3>
Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-28575105598489532612017-03-15T17:43:00.004-04:002017-03-15T17:43:45.774-04:00What's Worse Than A Low? A Heart Attack. Here's What Mine Was Like.When I was first told about the complications that often come with Type 1 Diabetes, blindness, amputation and dialysis (what my doctor called "The BAD Ones) were those I feared most. They also said something about cardiovascular ones like heart attack and stroke, but since those happen to millions of people, I didn't worry about them much. I should have.<br />
<br />
<a href="http://www.diabetesforecast.org/2013/aug/what-rsquo-s-behind-heart-attacks-in-type-1-diabetes.html" target="_blank">Stone cold fact: 3 out of 4 people with diabetes will die of a heart attack.</a> Two weeks ago, I almost did.<br />
<br />
<h3>
Warning Signs I Ignored</h3>
<br />
On a Tuesday, I started to notice some pressure in my chest. No big deal - I've had it before, and my cardiologist told me not to worry about it unless I had other symptoms of a heart attack. Some of those either mimic Type 1 complications (sweating-hypoglycemia; indigestion or nausea-gastroparesis) or are hidden by another complication I have: autonomic neuropathy). But when shortness of breath and pain between my shoulder blades and in the left arm started, I began thinking something was going on. Or not.<br />
<br />
Why not? Well, at most the symptoms were subtle - what I thought of as niggling. But they were persistent. After a lot of internal debate, on Thursday I decided to make the trip to the Durham Veterans Affairs Medical Center.<br />
<br />
<a href="http://wncn.com/2017/03/03/durham-va-responds-to-viral-photos-from-emergency-room/" target="_blank">At the time, their ER was the subject of some negative press and intense scrutiny over alleged mistreatment</a>. My experiences there (more than I can count) had been the opposite. Like any ER, if you aren't in extremis, you are going to wait. They'll get to you, but be prepared to be patient. This time, that wasn't necessary.<br />
<br />
<h3>
During My Heart Attack</h3>
<br />
I walked in at 3:50. I checked in and said I was having chest pain. A triage nurse heard my symptoms, took my vitals and gave me a baby aspirin. He hooked me up to an EKG, printed it out and disappeared. Within a minute they took me to a treatment room and drew some blood. In just a couple of minutes, the blood test result was back: my Troponin was at 6.56 (normal range is 0.0-0.49). One doctor explained it this way: Troponin is a heart enzyme test that shows if you are having a heart attack - it is the heart's way of say it is pissed off. Mine was. <br />
<br />
By a quarter after four, doctors and nurses came out of the woodwork. Between the EKG and the Troponin I was clearly in the middle of a heart attack. One doctor said that they were going to do a cardiac catheterization on me - the only issue was whether it would be upstairs in the Durham VAMC or across the street at Duke Hospital. In as long as it takes to make a phone call, they took me upstairs. Happily, the cardiologist doing the procedure admitted that he liked the VAMC setup better - it was newer and better equipped. <br />
<br />
They rolled my bed to the elevator and up we went. When we were in the hallway, I learned that the bed was motorized - suddenly we were flying down the halls. Once again, I was not disappointed.<br />
<br />
The procedure was no big deal from my perspective. The only moment of worry was as the medical team was going down their checklist, one of the nurses asked me if I was an organ donor and if I had an advance directive on file. I told her yes to both, but chided her in a good natured way that those questions were not the best for inspiring confidence. We all had a good laugh over that.<br />
<br />
First, my wrist was injected with a medication to make it numb. A catheter was placed in a vein in my wrist and snaked up to my heart. A dye was injected and filled the arteries of my heart. The doctor could see it on an x-ray screen. (The last time I had a 'cath' I was able to watch, but this time some of the equipment blocked my view.) I heard him describe the percentage and length of the blockages he found on my right coronary artery. Both were 99% blocked, one section was 23mm long, the other just 12. A balloon was used to clear both of them and a wire mesh called a stent was used to prop both of them open. Operation over.<br />
<br />
From start to finish, the procedure took maybe 30 minutes, and it was barely an hour after I'd walked in the ER. Next stop: the Cardiac Intensive Care Unit. After the usual questions (how to you feel, are you in any pain, etc.) the next item on the agenda: dinner. <br />
<br />
<h3>
What I Learned</h3>
<div>
Part of my heart died. Starved of blood, a portion of the heart muscle died - getting stiff like a leftover hunk of porterhouse in the fridge and not nice and supple as it was before. In future tests, my cardiologist will look at this closer and will see what we will need to do to compensate for that.</div>
<div>
<br /></div>
<div>
Like other people with diabetes, I have long feared episodes of hypoglycemia - 'going low.' It is distressing, often painful and the hallmarks are discomfort, sweating, panic and helplessness. We often hear of people going so low that they die, and that tends to scare many of us to death. In my mind, that is the worst part of diabetes. As I found out, there are worse things, much worse.</div>
<div>
<br /></div>
<div>
Closer to home, about 18 years ago my mom had a massive heart attack and died. Her symptoms were almost identical to mine. Also like me, she didn't seem to think they were a big deal. One critical difference was that she was on a car trip in the middle of rural Illinois. In my case, I was an hour or two ahead of her when I walked into the ER. Had I not, according to the doctors I spoke with, I'd have had the same fate.</div>
<div>
<br /></div>
<div>
What continues to trouble me is that my symptoms were minor - barely niggling. On a scale of ten, my pain barely made it to a 4 at the most. Usually it was in the 1 to 2 range. My endocrinologist opined that with years of autonomic neuropathy, those signals weren't working right and that I'd have to use my brain to compensate for what my body wasn't telling me.</div>
<div>
<br /></div>
<div>
Another oddity is that I'd had a cath done 11 years ago. No stents, and at worst my left coronary artery was 50% blocked. Nothing on the right side. After this cath, the left hadn't changed an iota and the right was almost completely blocked. </div>
<h3>
</h3>
<h3>
What You Should Learn</h3>
<div>
<br /></div>
<div>
Don't ignore <a href="https://www.nhlbi.nih.gov/health/health-topics/topics/heartattack/signs" target="_blank">the symptoms of a heart attack</a>. Ultimately, this or other cardiovascular disease will eventually kill 75% of us who toil with diabetes. It is doubly threatening if you've had diabetes for a long time as your body might not warn you as easily as our more pancreatically advantaged friends. </div>
Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com3tag:blogger.com,1999:blog-4823597061466590361.post-7445992996590291712017-03-05T16:20:00.002-05:002017-03-05T17:28:26.130-05:00Pro Tips: Type 1 in the HospitalGoing to the hospital is something everybody avoids, but sometimes it happens. If you are a Type 1, there is probably a better chance that it'll happen, and to make it go smoother, it helps to plan ahead.<br />
<br />
In my case, the last few times I was in the hospital, I accidentally learned a few lessons that have made later stays easier. While your doctors and nurses will do their best for you, just like everything Type 1, some of it is up to you.<br />
<br />
<a name='more'></a><br /><br />
1.) Have a bag of "diabetes necessities" ready to take with you. You might think "it's a hospital, they have insulin, syringes, blood glucose testing gear, etc. They'll take care of that." Not so fast. I've had lows in an ER, an ICU, a Cardiac ICU and a regular ward. None had glucose gel/tablets, etc. Also, they might test your blood an hour before a meal, if at all. Or if you are using a pump or CGM, my hospital doesn't stock infusion sets, sensors, etc. So I have a handy bag with everything I need (minus insulin - the hospital has it) that would keep me going if I were stranded on a desert island for a week. In some ways, a hospital is like a desert island if you have Type 1. Plan accordingly.<br />
<br />
2.) Pack another bag of "extras." Like their fashion selections? Enjoy staring at a dead smart phone? Have dreams of brushing your teeth with your finger or do you look forward to washing your hair with hospital hand soap? In that case, you are fine. Otherwise, toss some traveler sized hygiene items, a charger and maybe a book in an old, unused backpack. Add a pair of baggy sweats (big sleeves to fit over IV lines, baggy to keep from getting tangled in EKG wires, etc.) and slippers, too. Being in a hospital isn't pleasant, but adding little things of your own takes the edge off the nastiness.<br />
<br />
3.) Don't assume that they'll figure out your BG/carb count/bolus routine. They won't know your correction factor, insulin/carb ratio, or if they did, how to do the carb count and get the bolus right. That is on you (sorry - no breaks). That is if you are lucky.<br />
<br />
In other cases, some unknown clairvoyant genius will decree that for lunch you need XXX units of insulin. The dutiful nurse will bring it at 11:00 but your lunch tray won't show up until 1:00. You will be tempted to laugh, say "show me my BG and the carb count" - resulting in your being labled a noncompliant troublemaker. Good. That's your job- to do your best to keep your BG tight so that everything they are doing to help you get well has the best chance of working.<br />
<br />
Ideally, work it out with the head nurse and your doctor(s) on how your diabetes will be managed. If they come to respect your knowledge and expertise in managing it, they will (often) let you handle that part of your care. Keep them informed (just like you'd expect your doctor and nurse to communicate). Ask questions (will X or Y impact my glucose?, etc.). Use your meter and strips and check your BG like you normally would. Let the nurse know the results.<br />
<br />
If you are on a pump, all bets are off. Some endocrinologists are good with them, others less familiar. Most doctors and nurses are aware they exist, but that is about it. A Continuous Glucose Monitor? Forget it. Last week I spent two hours explaining my pump and CGM to an ICU nurse. Other ICU nurses had seen maybe 1 pump in 5 years. Doctors (and children, for that matter) often fear or mistrust things they don't understand. Guide them along with a gentle hand.<br />
<br />
4.) Try to remember that your Type 1 Diabetes is often seen not as a disease by itself, but a complication to whatever your doctors and nurses are trying to fix. This only applies if you aren't in for Type 1 itself (most typically DKA). Having surgery? Type 1 makes healing slower, increases infection risk, is another challenge for the anesthesiologist to work with, and makes the entire experience more complex. Sometimes symptoms of hypo or hyperglycemia get confused with symptoms of other problems as well.<br />
<br />
5.) Be a patient patient. Dealing with Type 1 gives you more insight on how your body works and how complex it can be to keep it functioning. Most other patients don't have your insights, and that is how doctors are accustomed to approaching most patients. You have a chance to be a gentle teacher, mentor, collaborator and partner in achieving success. To do that you have to earn your doctor's confidence and respect. Done thoughtfully, and with them clearly knowing that you want to achieve the best possible outcome, then you have a chance of making the experience a positive one.<br />
<br />
Managing Type 1 Diabetes in a hospital setting is a challenge both for people with diabetes and their health care providers. Working together, they can turn that challenge into a success, but don't forget that you play an important role.Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-48957662550300130352017-03-05T15:23:00.001-05:002017-03-05T17:28:05.175-05:00Having A Heart Attack? The Durham VAMC is Tough to Beat.<br />
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I've had heart issues going back to 2006 when I had a mild heart attack that was a result of being in a diabetic coma. While it happened again two more times in 2015, numerous tests showed no lasting impact. In fact, just a few weeks ago I checked with my cardiologist to see if there were any concerns from his standpoint about having elective surgery. There were none. I have had chest pain all along, but my cardiologist said it was of no concern, but he was careful to remind me of the symptoms of a heart attack and to take appropriate action if they occurred.<br />
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Then last week the usual chest pains seemed to be a little bit different. They weren't dramatic or greatly concerning - just simply annoying. But now they came with a twitch of pain in my left arm, and a mild twinge now and then between my shoulder blades. While no big deal separately, add them to together and while the pain was a 2 or 3 on a scale of 10, they got me to thinking that I should talk to somebody smarter than I.<br />
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The obvious choice is to go to the Emergency Room. When all you have for healthcare is the Veterans Affairs, <a href="https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0ahUKEwj716OplsDSAhXMQiYKHQXRCDUQFggcMAA&url=https%3A%2F%2Fwww.va.gov%2FPURCHASEDCARE%2Fdocs%2Fpubfiles%2Ffactsheets%2FFactSheet_20-02.pdf&usg=AFQjCNERYpFdqNdqRvmOdjwqyg_n1pPBdQ&sig2=1RMhKziyghawehvNUXwbNg&cad=rja" target="_blank">that choice isn't exactly simple.</a> If I went to a non-VA ER and my problem was not a true emergency, the VA might not pay for it and leave me on the hook for whatever that visit might cost. That amounts to a pretty big roll of the dice, and I'd been stuck once before, so unless somebody else made the call, i.e.: an EMS crew, then I was going to the VA's ER.<br />
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In my case, the nearest one is in Durham, NC - a one-way trip of 65 miles. I was feeling cruddy, wasn't sure it was an emergency, so off I went.<br />
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I checked into the ER at 3:44. I gave the clerk my symptoms, got an wristband and took a seat. I cracked open my novel and prepared to wait. Before I finished the second paragraph, they called me back. A nurse catalogued my symptoms, took my vitals and hooked me up to an EKG. He gave me some aspirin, drew some blood and returned with a doctor.<br />
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The MD said my EKG was concerning and I was hustled off to a treatment room. I hadn't had a chance to get comfortable before a nurse came back with the blood results. A Troponin test came out at 6.56 - at 0.5 one is assumed to be having a heart attack.<br />
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Before I knew it, a half dozen doctors and nurses came out of nowhere. Very quickly they concluded that I needed to immediately have a cardiac catheterization done to identify and clear any blockages of arteries that feed blood to my heart. In other words, I was right in the middle of having a heart attack.<br />
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There was no wasted motion, panic or confusion. Clearly they knew exactly what had to be done, the role each would play and that time was essential to a good outcome. They took me to the OR, ran a device into my arm and up to my heart. They injected die that showed up on a computer screen that showed exactly where the blockage was. Next they expanded a balloon to reopen the artery and inserted a sleeve made of wire mesh to keep it open. They repeated that again for a second artery and said the problem was solved. The entire procedure took just 45 minutes and I was wheeled out of the OR and up to the Cardiac Intensive Care Unit two hours and one minute after I'd walked into the ER.<br />
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After getting situated in the CICU, the next order of business: dinner.<br />
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<a href="https://www.google.com/search?q=durham+va&ie=utf-8&oe=utf-8#q=durham+va&tbm=nws&*" target="_blank">Much has been said in the media attacking the Durham VAMC ER for poorly treating 3 veterans the week before my visit.</a> I don't disagree that one callous employee dropped the ball. But like any other large organization, all it takes is one knucklehead to do something dumb once to taint the hard work and professionalism of hundreds who do the right thing all the time.<br />
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I'll tell you this: I owe my life to the skill, dedication, compassionate care and professional excellence of the men and women of the Durham VAMC. They serve veterans well and provide fine service that we can all be proud of. Sadly, that isn't the kind of story that attracts media attention, or is celebrated by so-called "Concerned Veterans." While I'll admit that there are things that annoy me that could be done better, I wish that their success stories (like mine) were more widely publicized.<br />
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To the men and women of the Durham ER, CICU, Cardiology and Endocrinology Departments: my family and I thank you.Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-33421305424509416012017-03-01T00:39:00.005-05:002017-03-05T17:28:38.842-05:00Durham VA Hospital: Awesome, Awful and RecommendationsLast Friday I had an appointment with my Endocrinologist at the Durham Veterans Affairs Medical Center. It was fantastic - she and I and an exceptional CDE (Certified Diabetes Educator) spent over two hours working together to find better way to manage my Type 1 Diabetes. No easy task given my constellation of difficult, unusual and conflicting complications. In my book she is a world-class clinician, technically astute, imaginative and empathetic. For somebody like me who cannot be fixed medically, the time I spend with her is a bright spot on the dark, scary and lonely road of diabetes.<br />
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The Emergency Room</h3>
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But while I was there, something else was going on. I first saw it on Facebook - a story that went viral of some veterans waiting for care in the Emergency Room. What was shocking was an elderly veteran lying on the floor just a couple of feet in front of the reception desk. <a href="http://www.dailymail.co.uk/news/article-4268614/Facebook-post-VA-treatment-patients-causes-uproar.html" target="_blank">Here is an account that made it all the way to Great Britain.</a><br />
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Background</h3>
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I am a disabled veteran and receive all of my medical care through the Durham VA Medical Center and the Raleigh Community Based Outpatient Clinic. I've had numerous appointments at Durham in the Endocrinology, Gastroenterology, Nephrology, Cardiology, Urology, Audiology, Orthopedic, Dental and Eye Clinics for the last 6 years. From a patient's perspective, I think I have an idea of what works well and where improvement is needed.<br />
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I have also been in the Emergency Room. Several times I made the 130 mile round trip to get care for minor things because it would take weeks to see my primary care physician. Four times somebody else took me. The worst was when gastritis turned into a diabetic coma. At the ER my blood glucose was 13 times higher than the upper limit of normal. The stress my body was under caused a heart attack. My kidneys shut down and it took over 6 gallons of intravenous fluid to get them restarted. I spent 10 days in ICU. But I was alive. I was alive because the Durham VA Medical Center ER team acted promptly, appropriately and professionally.<br />
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Other times when my problems were what are classified as "routine" in the initial triage that all patients receive, it was much like a typical ER. While admittedly feeling pretty cruddy, the waits are interminable, the seats breathtakingly uncomfortable, the experience endured only so that I could have a chance at feeling better walking out than I did walking in. Perhaps part of the problem is that the receptionists and triage nurses see people who are on the edge of death, horribly injured or in other exceptional distress. For those of us who are just "routine" we wait and wait and wait until those who are sicker get treated.<br />
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What happened last week to the ill veterans in that story was inexcusable. Equally unforgivable is that instead of getting off her lazy but and finding somebody - anybody - who could help those veterans, the lady who posted on Facebook was too busy taking pictures and being indignant to actually get those gentlemen some help.<br />
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The Big Picture</h3>
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Like any large organization, the Durham VA Medical Center is a mixed bag. My Endocrinologist (who is also on the faculty of the Duke Medical School) and the Endocrine Fellows she trains are universally outstanding. Once while in ICU, she put one of the fellows on my case for a day with the instructions, "Don't break him." Though board certified, that poor fellow was scared.<br />
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I also have a Nephrologist who though on a fellowship is also top-notch. As my adventures in kidney failure inevitably spiral into a bad place, she takes great pains to make me a partner in my care. She explains the chemistries involved, the alternatives available to me and has earned my confidence that I am getting the best care available. That care is delivered with professionalism, compassion and in a way that assures me that she is going the extra mile.<br />
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On the other hand, there are more than a few things I would happily change. As a result of Type 1 Diabetes, I have some rather horrible and frequently debilitating gastrointestinal complications. Those entail frequent appointments in the GI department. Like many teaching hospitals, fellows, interns and medical students provide the bulk of the clinical care under the supervision of a more senior physician. While two sets of eyes on a case are usually a good thing, the frequent turnover of providers is not. I've had 5 different GI doctors, and with each change the progress that has been made with my old doctor is wiped out when the new one starts on my case.<br />
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After 6 years, 5 doctors and with my GI problems getting worse with no relief in sight, one of them suggested I see a gastroenterologist at the Wake Forest Medical School. He is reputed to be THE world leading expert on my particular problem. To send patients outside the VA when the needed care cannot be provided, something called "Veterans Choice" was created by Congress. If care was unavailable, would take more than 30 days to provide, then the VA would contract for that care and the veteran would get help. That request for me to go to Wake Forest was first mentioned to me on June 28, 2016. Two weeks ago I was finally given an appointment - May 31, 2017. That is 11 months if anyone is counting.<br />
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While fighting the bureaucracy to get that appointment, I came to the end of the line when I was told to call the Patient Advocate Office. They are the people dedicated to ensuring that difficult problems get resolved, logjams are broken up, or if not, a rational explanation is given to the veteran. I made the call. The phone rang and rang. Nobody picked up. After a couple of minutes, it didn't go to voiice mail - it automatically disconnected.<br />
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I was furious. Over a year earlier, in a Town Hall Meeting, I got up and mentioned that I'd tried to call the Patient Advocate Office at 3:00 one afternoon. I got a recording saying that they were closed for the day (but the recording said 4:30 was when their office hours ended). No voicemail, either. I suggested that they might want to use voicemail for times when nobody was available. I was assured that they had it.<br />
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Recommendations For Improvement</h3>
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To better serve veterans, it might be useful if the VA thought a bit like their customers - the veterans.<br />
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1. In the military, somebody is always in charge. They also report to somebody. It's called a chain of command. Walk into any Infantry Company or Cavalry Troop and right inside the door for all to see are pictures of the chain of command. Walk into a VA clinic and the impression is that the receptionist runs it. Have a problem? Chances are the receptionist can't help, but the head of the clinic can. Post a picture and contact information for the person running the clinic. Add one for the person they report to, and so on.<br />
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2. Also in the military, leaders are readily identifiable. Sometimes it is by rank, or back when I was in the Army, leaders wore green tabs on their epaulets. At the Durham VA, you can't tell if that older gentleman in the tie is the Chief of Staff or a stock clerk in the canteen. For a patient, whether in a clinic or on a ward, the cacophony of scrubs, lab coats and various combinations make it impossible to tell who is a surgeon or an orderly. To patients, family members and the employees, that is useful information.<br />
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3. Fix the damn phone system. Finding the number to a clinic is next to impossible. The system is atrocious, there is nothing resembling a useful phone directory. The introductory spiel from the Hospital Administrator and the phone options runs nearly two minutes. If you really care (like the interminable recording states) then spare me the speech and help me to get the person I need on the phone in a timely manner.<br />
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4. Speak to veterans. Not in some formal advisory council meeting, not in a mailed survey, or by reading social media comments. Leaders from hospital executives to clinic and department leaders need to make time to get out of their office and speak to veterans. One on one. Face to face. Ask smart questions, like "what can we do better to help you?" or "if you were in charge, what would you change" or "tell me what you need that we aren't providing." Any decent Corporal worth his salt know how to do that. VA leaders should be no different.<br />
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5. Use social media. I'm on your email list - don't just use it to tell me about snow events. Got something coming up (like a Town Hall!) use it for that periodically. Put a functional calendar of future events on your Facebook page - don't use Facebook to only talk about things in the past that might have interested me.<br />
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6. Appoint a contact person for each clinic who can answer questions from veterans and family members. Many clinics don't run 5 days a week, and it is up to the veteran to figure out when it is operational, and to use that to get the timing right to ask a question.<br />
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Above all, for veterans the VA is an unfathomable bureaucracy. Sometimes we don't know what to ask. If we do, the most insanely difficult thing in the world is figuring out who would know, and even harder than that is to find them. If you can figure out how to overcome that, then in my book the VA would not only walk on water, they'd skip on whitecaps.Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0tag:blogger.com,1999:blog-4823597061466590361.post-74614035503771940262017-02-25T09:59:00.002-05:002017-04-30T01:35:33.598-04:00Welcome to the "Type 1 Twilight Zone"<div style="text-align: center;">
<b><i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It is a place not of control or calamity. A strange place where the patient is ill, but not sick enough to cure. It is where doing the best you can with cutting edge medical advice is often inadequate. It is where best practices of medical care, compassion and empathy are comforting and supportive but not enough to overcome uncertainty and frustration. It is my place - the Type 1 Twilight Zone. </span></i></b></div>
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<span style="font-family: "times" , "times new roman" , serif;">BACKGROUND </span></h3>
<span style="font-family: "times" , "times new roman" , serif;">I was diagnosed with Type 1 Diabetes in January, 1994 - just a few days after my 30th birthday. For the first twelve and a half years I used multiple injections of Regular and NPH insulin. I was among the very first users of the Dexcom Continuous Glucose Monitor - starting in the summer of 2006 but discontinuing it (not by choice) a few months later. At around the same time I started using a Medtronic MiniMed Insulin Pump and have been for the last 11 years. I currently use a Medtronic 530g Insulin Pump and Enlite CGM.</span><br />
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<span style="font-family: "times" , "times new roman" , serif;">DISCLOSURES</span><span style="font-family: "times" , "times new roman" , serif;"> </span></h3>
<span style="font-family: "times" , "times new roman" , serif;">I applied for, and was accepted as a <a href="https://www.medtronicdiabetes.com/ambassador-overview" target="_blank">Medtronic Ambassador</a> in the Spring of 2017. According to their web site, "</span>MiniMed Ambassadors receive promotional items and educational material
to use and share as the Ambassador sees fit. Ambassadors are not
provided monetary compensation for their participation in this program.
Opinions expressed by an Ambassador are based on the Ambassador's actual
experience and are not necessarily the opinions of Medtronic MiniMed."<br />
<br />
I have never received any compensation, promotional items, or anything of value from any company or organization related to diabetes. <br />
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<span style="font-family: "times" , "times new roman" , serif;"> </span>Tom Goffehttp://www.blogger.com/profile/17378857234816308125noreply@blogger.com0