Hiking with Diabetes Part 1

Posted on July 29, 2013 by Laddie

I am lucky to be able to escape winter in Minnesota and spend several months in Arizona. Although I’ve always been active in sports such as tennis and golf, I have expanded my athletic repertoire to include hiking. I belong to two women’s hiking groups in Arizona. My primary group is a serious gung-ho group that hikes 8-12 miles with significant elevation changes on a typical Friday. Many of the places we hike are in mountainous areas where we have no cell phone coverage. My second group is more casual with shorter hikes on more populated trails. Although I certainly carry food, glucose tabs, and water with my casual group, I am not too concerned with diabetes causing a problem. So most of my comments below are related to my more rigorous and remote hiking excursions.

Although I’ve always made sure that my hiking companions know that I have Type 1, I’ve never done much else except ensure that my pockets and backpack have plenty of glucose tabs, granola bars, juice, and other food. This year it finally struck me that it was absolutely insane to repeatably go out into the no-wheres of Arizona without a Glucagon kit.

I stopped getting Glucagon kits years ago because I’ve never needed one and they expire so quickly. My husband would call paramedics 100% of the time before he would ever give me an injection. If I’m low at the grocery store or mall, no stranger will know to find the orange kit in my purse.

This hiking season I finally got a new Glucagon kit. Fortunately my hiking group includes a former RN and a former school principal who has a sister with Type 1. Even if they weren’t along, the others in my group are strong and confident women who would take control if needed. I wrote up a sheet to share with everyone describing the levels of hypoglycemia and directions to use the glucagon kit. I indicated that I would handle mild lows myself and they would probably never be aware of them. I wear a Dexcom G4 which gives me some guidance as to what is going on with my blood sugar. I also have a One Touch UltraMini attached to my belt and I have perfected testing while walking without falling off a cliff.

My favorite advice for moderate hypoglycemia is if they ask me if I am OK and I say “yes”, don’t believe me. I am getting better about admitting that I am low when asked. But old habits die hard and I don’t want my false bravado to fool anyone into thinking I’m safe when I’m rapidly getting into trouble. I also described symptoms that they might notice such as slurring of words and vacant eyes.

I discussed severe hypoglycemia and indicated that at this point I would be unable to eat food or drink juice. Although the Glucagon kit comes with instructions, I wrote up a clear and more succinct page of instructions using some of the images from the Glucagon website. I also mentioned that Lilly has an iPhone/iPad app if they want to review that. The weakness of that app is that the instructions are just a copy of the printed material that comes with the glucagon kit. Too wordy for an emergency situation IMO.

I feel confident that I will never be in a situation hiking where a Glucagon kit will be needed and I hope that my confidence is not misplaced. I am very aware that if I experience severe hypoglycemia, Glucagon will be only part of the solution. My hiking companions will still have to arrange for emergency help to evacuate me if I am sick from the Glucagon or the effects of severe hypoglycemia. In areas where there is no cell phone coverage, that might mean spitting our group with some hiking out for help and some staying with me. This whole scenario is something that I never want to visit, but my safety motto is to be prepared.

I often joke with my hiking companions that my aim every Friday is to not end up on the evening news. Unfortunately lost and injured hikers are a regular occurrence on Arizona newscasts. So far I have succeeded in that goal through hundreds of miles of hiking. I’ve been sore, dirty, and exhausted many weeks, but never on the news. Hallelujah!

A Crusader for Medicare Coverage of CGM

Posted on July 25, 2013 by Sue from Pennsylvania

Please welcome Sue from Pennsylvania who will be a regular contributor to my blog. Sue is the wife of a Type 1 diabetic and a crusader for the coverage of Continuous Glucose Monitoring Systems by Medicare. I will be Medicare age in four years and Sue is fighting the battle to help her husband and everyone like me who follows in his footsteps.

This is my very first blog post, so here goes. I am the wife of a diabetic. My husband has had Type 1 diabetes for over 15 years. He’s been on an insulin pump for most of that time. About five years ago, he got his first Continuous Glucose Monitor (CGM) and it made a tremendous difference in his life. He has brittle diabetes, hypoglycemia and hyperglycemia unawareness and before he got his CGM , would have episodes of very low blood sugar and in many instances, pass out because of this. With his CGM, this no longer happened.

In June of 2012, he reached 65 and had to enroll in Medicare. Since then, our life has been somewhat of a nightmare. His CGM, at that time, was over 2 years old and starting to act up. It no longer gave accurate readings and at times when he would go low or very high, it would no longer sound an alarm advising him to take immediate action. When his endocrinologist wrote a prescription for a new CGM, his insurance company denied payment because unlike our private insurance, Medicare does not consider it a necessary device and in their words it is just a “precautionary” device. We have appealed the decision and had a hearing with an Administrative Law Judge on June 26, 2013 and are now waiting for the Judge’s decision.

For five years, my husband was able to lead a normal life without the constant worry of going into a state of confusion or comatose, especially when driving. Now all that has changed and it’s put indescribable pressure on both of us emotionally and on him physically as well. Having these peaks and valleys in blood sugars makes him tired and out of sorts most days. Since he is gainfully employed and does quite a bit of driving in his job, it’s a constant source of worry that something awful will happen when he’s out on the road.

It’s so hard to wrap our brains around the fact that something that is so lifesaving to my husband (and myself) is being denied by Medicare. This is especially troubling in the face of the fact that our endocrinologist has gone to bat for us so many times during our quest to get a new CGM because she considers it of the utmost necessity for my husband.

Our hope is that our ALJ rules in our favor and that our insurance company upholds the Judge’s ruling. After this happens, my mission in life is to have Medicare change their guideline for Continuous Glucose Monitors.

Two Updates to TSA Roulette

Posted on July 22, 2013 by Laddie

My previous post discussed the stress of going through TSA airport security when traveling with an insulin pump and how it can be like playing roulette. I have two updates to that post. One recounts a recent airport security experience. The other describes a special TSA program for people with disabilities and medical conditions.

Randomly Not Diabetes

Late last week I returned home from an international family vacation and had an ironic adventure with airport security.

My trip out of Minneapolis was uneventful with a routine pat-down and hand swabbing. Although the TSA agent at the AIT (Advanced Imaging Technology) scanner told me that “everyone goes through with their pumps”, he did not argue when I refused to do so. The pat-down was efficient and the female agent was professional and kind.

My husband used online check-in for the trip home. It went smoothly for him and the children and grandchildren. But he was unable to check me in online.

At the airport I got my boarding pass with no problem and I assumed that the online glitch was a thing of the past. No such luck. When my passport was scanned at the security desk, it was immediately confiscated along with my boarding pass. I was instructed to go through the metal detector and then retrieve my documents from the agent on the other side. That retrieval involved having my purse and backpack inspected compartment by compartment and item by item. This was followed by a pat-down and hand swabbing.

Passport and boarding pass in hand, I headed for the gate. When my boarding pass was scanned by the Delta agent, I was pulled aside for another search of my possessions along with another pat-down.

If you travel much, you know that I was just a passenger selected randomly by the TSA for enhanced security screening. It was a scenario unrelated to diabetes that I neglected to put on my TSA Roulette Wheel.

After going through customs and retrieving my luggage in Atlanta, I received another security pat-down because of my insulin pump. It was a fitting end to a three pat-down day for a Type 1 grandma traveling with a baby, a screaming 2-year old, a 5-year old, three adults, a group total of ten pieces of carry-on luggage, and an insulin pump.

TSA Cares

Yes, despite occasional evidence to the contrary, they actually do care and have a program called TSA Cares to prove it.

TSA Cares is designed to help people with disabilities and medical conditions navigate the security screening process. The entry into the program is through a help line at 1-855-787-2227. It is recommended that passengers call the help line 72 hours before a trip. For many people the phone call will provide all the information and assistance necessary. For others with more complex needs, the help line agent can arrange for a Passenger Support Specialist (PSS) to personally escort them through the screening process at airports with the program.

Meri Schumacher of Our Diabetic Life is the mother of 3 boys with Type 1 diabetes. She wrote a very informative blog post about her recent experiences with Patient Support Specialists through TSA Cares. She was very emphatic that the PSS program is at risk for being discontinued if more people do not use it.

So check out the program and give it a try if you think it would be helpful to you. And be sure to spread the word to friends or family members who might benefit from TSA Cares and a Passenger Support Specialist.

Playing Roulette with the TSA

Posted on July 18, 2013 by Laddie

There are a couple of certainties in my life. If I want to travel, I need to fly. If I fly, I need to go to the airport. If I want to get to my airplane, I must go through a TSA security checkpoint. Sounds pretty simple, doesn’t it?

Like most people who travel with an insulin pump, my stress level rises as I approach the TSA checkpoint. My normal strategy is to stick my pump inside my waistband and wear a shirt long enough to hide it from view. If I see that I will be screened with a traditional metal detector, I rejoice because I have a good chance of walking through it without alarms and therefore no pat-down. Occasionally I set off the alarm and I’ve never been able to figure out why sometimes it alarms and usually it doesn’t.

If I see an advanced imaging technology scanner, I know it is a certainty that I will have to declare my pump and receive a pat-down. Some TSA personnel will tell you that you can wear your pump through the scanner, but I choose to follow the directive of my pump company that the pump should not go through the scanner.

I hate pat-downs and feel somewhat violated by them. I have been lucky that every pat-down agent has always treated me politely and I do my best to relax knowing it will be over soon. I live in total fear of having the horrible TSA experience that fellow Type 1 Kelly Kunik experienced in April of this year.

I once flunked the swabbing of my hands and that resulted in a search of my carry-on luggage as well as an extensive pat-down in a private area. Oops, I mean an area behind a partition although I think they also searched my private areas. Rumor has it that hand lotion can cause a false positive, so I try to remember to never use it before traveling. Kelly Kunik thought that soap might have been the culprit in her swab test.

Basically the TSA experience is a crapshoot. It’s a roulette game where you spin the wheel and what you get is what your get. Earlier this year there was an online petition urging for consistency in screening of people with diabetes. I have read that the TSA values inconsistency and I think it is unlikely that we will see much change.

My husband travels frequently and qualifies for TSA PreCheck. This is a program that according to Delta’s website is “an intelligence-driven, risk-based screening initiative through which eligible passengers are selected for expedited screening.” He goes through a special line at Delta checkpoints and walks through without removing his shoes, belt, or liquids and computer from his briefcase. It seems to me that there could be a program where people with medical devices, artificial joints, etc. could pre-register in some program that would help us move through security in an easier and more predictable way.

Every time I am selected for additional screening, I marvel at our security system where senior citizens in wheelchairs or with artificial joints and people with insulin pumps are being pulled aside every time that we travel. At the same time I read of people who have gotten guns and knives through the checkpoints. Not to say that a granny can’t be a terrorist, but in general, someone is wasting resources here.

I’ll be traveling later this week. Time to play roulette with the TSA!

Abby the Black Lab Discusses Nutrition

Posted on July 15, 2013 by Laddie

WHILE THERE IS NO SUCH THING AS A PERFECT DIABETES DIET, THERE ARE CERTAIN GUIDELINES TO KEEP IN MIND TO ENSURE HEALTHY EATING WITH DIABETES. TODAY ABBY THE BLACK LAB HAS TAKEN TIME TO ILLUSTRATE SOME IMPORTANT NUTRITION POINTS. PLEASE NOTE THAT HER ADVICE MIGHT DIFFER SLIGHTLY FROM WHAT YOUR NUTRITIONIST TOLD YOU.

Although I do not have diabetes, I know a lot about food. Like most Labrador Retrievers, food is my hobby. Food is my passion. Food is my inspiration for excellence. I think about it most of the time when I am not out shopping for new sunglasses and other fashion accessories. Today I will share some guidelines that I am sure will help in your daily attempts to eat nutritiously while enjoying every bite of food and meeting your blood sugar goals.

If you have any questions about nutrition, please do not hesitate to leave a comment or send an email. As always your friend, Abby the Black Lab.

Blah Blah Blah

Posted on July 11, 2013 by Laddie

I think that most of the Type 1 Diabetes Online Community is currently in Lake Buena Vista, Florida for the 2013 Friends for Life Conference.

I know that when I write a blog post, it should be meaningful to me regardless of whether anyone else reads it.

But I know that everyone is in Florida and no one is going to read this. So blah, blah, blah.

A year ago I would have thought that there was nothing for me at the FFL conference. But now I think that maybe I should go next year.

Blah, blah, blah.

OmniPod’s New PDM

Posted on July 8, 2013 by Sue from New York

I had anxiously waited for several months to get my new OmniPod PDM and smaller pods. When they finally arrived I was very excited, but decided to finish using the old pods before starting the new ones. On the advice of a friend I did save one pod in case something happens to the new PDM, so I can use it with the old PDM before a new PDM replacement arrives.

I started using my new PDM and pods five days ago. During the setup, I was instructed to put in my ID Name, so I put in Sue. Now every time I turn on my PDM, including when I insert a test strip for a blood sugar check, I see this screen:

PDM ID:

Sue

Press “Confirm” if correct.

I wondered what could possibly be the reason for this extra step before using the PDM? Have there been people using the previous PDM who used someone else’s PDM by mistake? Shouldn’t they give us a way to shut this feature off if we so desire? My son, who also has type 1 diabetes, lived with us until 3 months ago. He uses the Medtronic pump, but if he used the OmniPod pump, we would have used different colored gel skins to differentiate them. That would have been easy enough to do, because I have four gel skins-two white, a lime green and my new black one that came with my new PDM.

Now I’m the only one in the house who has diabetes, so there is zero chance of someone else here wanting to inject insulin. So I decided to call Insulet Customer Support and ask if there was a way to turn this feature off. I was told that no, there is no way to turn it off (in other words, suck it up). I asked the reason for this feature, and was told that there are some families with more than one person with diabetes using the OmniPod PDM, and they added this feature to eliminate confusion. I guess it never occurred to them to tell those people to use different colored gel skins on their PDMs.

OK I’m trainable, and I’ll get used to this extra step, but it still seems silly to me. But on second thought, since this pump is not attached to the body like the conventional pumps, I suppose they are trying to eliminate any chance of being sued. I sure hope no one has already tried to sue them for this, because I do love the company and their new smaller pods and hope they continue to stay in business until there is a cure for diabetes, quirky PDM and all.

Strip Safely: Join the Campaign

Posted on July 5, 2013 by Laddie

Like many people with diabetes, I am frustrated by inaccurate readings from my blood glucose meters. The FDA requires that 95% of our meter readings above 75 mg/dl be within +/- 20% of the actual blood glucose value. Below 75 mg/dl 95% of the readings must be within +/- 15 points of the actual value. That means that my meter reading of 200 could actually be 160 or 240 and be considered accurate. Or my 60 could be a 45 or 75. When you base your insulin doses on these numbers, it’s a scary proposition.

I have learned from the Strip Safely website that the FDA standards are only part of the problem. Currently there is no further testing by the FDA once a meter and strips are on the market. At the Diabetes Technology Society’s May conference, studies were presented showing that there are many BG systems on the market that do not meet current standards and that some are as much as 40% high or low. That 200 meter reading can now be anything from 120-280. Most of the non-compliant meters and strips are manufactured outside the USA and the FDA has trouble monitoring these companies.

It was suggested at this meeting that the CMS (Centers for Medicare & Medicaid Services) bidding process is creating an atmosphere where price alone is determining what will be available. Quality is being sacrificed and patients are being put at risk. If you want to see one of those patients at risk, look in the mirror. I am close to Medicare age and I am terrified. Because Medicare standards influence most insurance company decisions, everyone of any age is affected by this.

Bennet Dunlap of the YDMV blog is the driving force behind the Strip Safely campaign. Only Bennet could have thought of such a titillating name:) He is encouraging each of us to visit the website, take the quiz, and learn about the campaign. Then we should follow through and write letters to our senators and representatives as well as members of the FDA. There are instructions about how to do this on the website and many sample letters. If you would like to listen to Bennet discussing the Strip Safely campaign, check out the 7/1/13 DSMA ‘Rents show.

I spent the 4th of July writing letters to my senators, my representative, and the FDA. I can’t think of a better way to have spent our national holiday than by exercising my right to influence my elected representatives. The models for my letters were from the Strip Safely website along with Meri’s letter at Our Diabetic Life. I wrote a longer letter to the FDA and if you would like a copy of it, please contact me through the link in my blog menu. The one page letter to my elected reps is below. This is the first time that I have ever written letters like this. If I can do it, so can you!

My Sample Letter (please copy if you’d like):

I have had Type 1 diabetes since 1976. I use an insulin pump to deliver the exogenous insulin that I cannot live without. I test my blood sugar levels about ten times per day and this testing is a critical part of my diabetes care. I need accurate meters and test strips to enable me to determine the correct amount of insulin required for meals, snacks, and corrections. Inaccurate strips lead to inaccurate insulin dosages that can impact my short-term and long-term health with resulting blood glucose highs and lows. Severe lows can be life-threatening.

The diabetes community in the United States needs your help. Please help keep inaccurate meters out of the hands and off the fingers of people with diabetes. At a recent meeting with the Diabetes Technology Society, the FDA acknowledged that there is a problem with test strips by certain manufacturers not delivering the level of accuracy for which they were approved. Many of these manufacturers are from Asia and other offshore locations. The FDA does not currently have a plan to do anything about the problem.

We need them to have one. Please use your office to help keep Americans with diabetes safe.

Type 1 Diabetes is characterized by incredible variability and inaccurate strips make a difficult disease even more difficult to manage. Please ask the FDA to implement a post-market program of ongoing random sampling of strips to insure that all brands consistently deliver the accuracy in the real world that they were approved to do.

We would also love to see the accuracy standard in the USA tightened to match the ISO standard of 15%. But first things first. Currently a lack of post-market quality control over manufacturers by the FDA degrades the existing standards to irrelevance.

The FDA has many responsibilities. Please make Fixing Diabetes Testing Accuracy one of the things for which the FDA is known.

Very truly yours,

To My Friends and Family

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Untethered at the Beach

Posted on July 1, 2013 by Laddie

My summer beach vacation is approaching and I have already started a list of to-do’s, must-haves, and don’t-forgets. Like most people with Type 1, I pack a double or triple supply of pump and CGM accessories, test strips, Novolog insulin, and all of the other paraphernalia needed to care for my diabetes.

I don’t normally keep long-acting insulin (Lantus or Levemir) at home as a back-up for my pump because I feel comfortable with an active and easily-filled prescription at a national chain pharmacy. But when I go on vacation in a remote location or out of the country, I always take syringes and a vial of Lantus with me. I could also take a vacation loaner pump from Animas, but for short trips I don’t bother.

Although my Animas Ping is technically waterproof, I don’t like to wear it in the ocean for fear a rogue wave might rip it off and send it down to Davy Jones’ locker. Even in a pool, I don’t want to deal with the consequences of water intrusion while I’m away from home. Because of the fear of theft, I would never leave my expensive medical device in a cooler on the beach or near the pool. But at the same time, I don’t want to abandon the convenience and precision of my pump for mealtime and correction boluses. And I cannot be without basal insulin for more than an hour without hard-to-correct blood glucose excursions.

My solution for beach and lake vacations is to use the untethered regimen for my insulin. The untethered approach involves taking about 75% of my basal insulin by daily injections of Lantus (or Levemir) and using the pump for the rest of my basal and for most or all of my boluses. The advantage of this is that it allows me to leave my pump safely in my hotel room or lake cabin for hours at a time because most of my basal requirements are being met by the Lantus injection. The advantage of having my pump cover part of my basals is that I can program a bump in my basal rates during the pre-dawn hours. Also, IMO it is better not to suspend the pump for hours on end so I have a pump pattern giving me a constant 25% of my basal needs to supplement my Lantus injection. Some of this basal goes down the drain when I am not wearing the pump, but with my increased activity all day long, I actually don’t need it.

If I am going to have a daylong outing with required boluses of fast-acting insulin, I carry syringes and a vial of Novolog in a Frio case or even more conveniently, take along a Novolog pen. But on this vacation I know that I will be close to the hotel all of the time and won’t need that option.

The best explanation of the untethered regimen can be found in a 2004 article by Steve Edelman. Although I only use this regimen on vacation, there are others who use it every weekend or athletes who use it all of the time.

I was motivated to write this post after reading a 6/27/13 blogpost by Sarah Kaye Sugabetic.me in which she describes how she juggles the use of her Ping pump along with her Omnipod. She states that the Omnipod is great for POOL TIME and I agree that a Pod would be perfect for beach and lake vacations. Unfortunately my insurance company is not going to pay for a second pump system just so that I can swim and snorkel tubeless a few days a year. Sarah has also been spreading the idea of painting her Pods with nail polish and maybe my insurance will approve them because they are a fun fashion accessory in addition to being a life-saving device:)

In the past the untethered regimen has worked well for me on water vacations and I expect the same success this year. It is also a reminder that there are creative ways to increase the flexibility of our diabetes tools by thinking outside the box.

Test Guess and Go

Even with testing, diabetes is a guess every day.

Monthly Archives: July 2013