Anniversary

It’s that time of year again. Somewhere around this time in February 2011 is when I was diagnosed with Diabetes. No specific date comes to mind because I was suspicious of why I was feeling bad prior to going for a full work up. Having access to urinalysis strips at work, I quickly found out I had a lot of glucose in my urine which is abnormal.

I can honestly say there have been entire years that go by where I don’t think about my initial diagnosis. The event itself was not earth shattering to me but the subsequent changes to my lifestyle definitely weighed more heavily on me.

Just a week ago I had another check up. My A1C was within the recommended range (<7%) again. After 8 year on the diabetes treatment train I am fortunate to have only been above the recommended A1C once. The one poor A1C value came just after completing my didactic year in PA school and I was definitely not making my health the priority I should have.

Thinking about all this time I can’t help but wonder what toll the disease has taken on my body already. The picture posted at the top makes me think about how many injections I gave myself over the years. I’m fortunate today to use the pump and not have to take so many injections. Thankfully by keeping my A1C and blood glucose values within (mostly) recommended ranges I have been able to stave off insidious complications like neuropathy among others. I hope to be able to continue this trend but I still need to make some changes.

Do you have a good anniversary story? How have you or your loved one been doing since that first A1C?


Let’s See Some I.D.

Shortly after my diagnosis I remember going to the grocery store looking for foods with no carbohydrates. If I could avoid carbohydrates then I could avoid taking insulin, right? Wrong…

Realistically, most foods have carbohydrates in one form or another. All I wanted to do was blend in and not stick out. Eating in social situations was similar. I remember thinking if I could avoid carbs, then maybe I wouldn’t have to leave the table to take an insulin injection (in the days before starting the pump) and be noticed doing so. I wanted to live as normally as possible. At that time I lived alone and did not carry much with me besides my wallet most days. Surprisingly I never had any hypoglycemic episodes at that time and thankfully so. I had no medial ID jewellery, tattoo, or card.

Over time like most other people, I grew smarter and gained a better perspective. I eventually purchased my first medical ID necklace. I didn’t like most of the designs but I settled on a dog-tag necklace. It was simple with my name, type 1 diabetes, and my mom’s phone number. In retrospect this didn’t make much sense because I lived 900 miles from her. I didn’t have any local numbers I wanted to contact in case of an emergency. 

One night I was at a bar talking to a girl when she noticed the necklace.  The music was loud but it sounded like she asked something about the military as she pulled the necklace out from my shirt. She studied the inscribed words for a second and then dropped the tag. An open mouth look of disgust came over her face as she stared at me. Without a word she promptly turned around and walked away. Apparently she was looking for a military hunk and not and a diabetic hunk. Bye Felecia!

Tattoo

Another identification medium people turn to is permanent. Medical alert tattooing has increased a lot recently. Here are some awesome examples:

The goal here is to make sure the tattoo is easily read and in a place likely to be found in cases of emergency. This site provides some useful advice when pursuing medical Tattoos, especially as a diabetic.

The most recognized symbol relating to diabetes is the blue circle. You can see its easily recognized above. Read more about it’s significance and origins here. I personally like the idea of getting  permanent identification but I would have to give it a lot of consideration.

I would love to see any examples you guys want to share. I have saved my favorite for last…

If you need some context >>>Liberty Medical Diabeetus (opens in a new tab)” href=”https://www.youtube.com/watch?v=6znUgimo-gA” target=”_blank”>Informercial


Abscess

I was inspired this week to address a relatively common issue that can have big consequences for diabetics. With this post I will try to avoid getting too scientific and keep everything basic but we have to begin with some background.

Abscesses start with a small break in the skin that allows bacteria to enter and start a local infection. Most often this is caused by a type of staphylococcus (staph.) bacteria. The primary bug found is staph. aureus. From here you can break it down to methicillin susceptible staph. aureus (MSSA) and methicillin resistant staph. aureus (MRSA). MRSA is fairly well know in the general public and requires strong antibiotics. The good news is that with early treatment, these infections can be taken care of pretty easily. The bad news is that staph. and it’s many forms exist on our skin as a part of normal life

Normal infections can be cured by antibiotic medications  but abscesses present a different challenge. At the center of an abscess is a collection of pus and bacteria and medication does not do a good job penetrating to the core. Ultimately, the best treatment for an abscess is drainage. For anyone who has had an abscess, you know the last thing you want is for someone to cut and squeeze at this painful area.

These pictures both show classic examples of abscess from the surface.

Who saw a spider?

Many patients seek advice from their medical providers after a suspected “spider bite”. 

#1 Did you see a spider?

#2 Did you witness a spider bite you?

If your answer is no to both of these, then you probably have an abscess. Cancel the Orkin appointment for tomorrow and just get some medical help….

Why is this potentially serious for a diabetic patient?

Most people do a good job keeping anything on their skin out of their bodies. Most diabetics break their own skin daily for blood glucose checks and insulin injections. Even worse, some of us wear implanted CGM’s and insulin infusion sets which provide direct communication between the outside environment and our tissue for days at a time. The skin is unable to protect us from infection when there is a compromise in its layering. On top of these possible entry points for bacteria, elevated blood glucose values can impede our natural immune response and gives bacteria extra help with its growth. Left untreated, abscesses can lead to sepsis.

The best way to prevent infection and abscess is to keep any skin compromise areas clean. For me, I always use Hibiclens prior to alcohol wipes before I inject insulin infusion sites and CGM sensors. By doing this and not keeping anything in my skin for too long I have cut skin issues down to almost zero. The other thing I have added is using Hibiclens in the shower. By using this weekly, I am able to help reduce bacteria found on my skin. Working on rotations within clinics and hospitals I am constantly surrounded by potentially dangerous bacteria. Again, sitting on top of intact skin I am safe but if any bacteria is allowed past my skin I am at risk for infection and abscess.

It’s a constant battle but one that can be easily managed if you know what to look out for. Here is a link to a site with some basic information about abscess. As with anything, if you think you may be developing an abscess, consult with your medical provider.


Just Plain Wrong

My current rotation has me working days and nights and switching between them often. Today I was taking a nap when I woke to 6 missed calls from my wife. I managed to answer the 7th to find my wife was coming home from work. “Why?” I asked her. She told me her Dexcom Follow app showed that I was at a blood sugar of 44 and without hearing from me, she feared the worst. I assured her I was fine and that this was incorrect. Looking back, I should have tested to see what it was but I am positive it was not that low. Thankfully I have not lost the ability to sense hypoglycemia at this point and my wife is keenly aware when I seem off. She has seen me with measured blood glucose values from 450 to 23.

While my wife loves being able to see exactly where my blood sugar is in real time, I really like the trend arrow telling me where I am heading and how fast I’m heading there.  Knowing if I am going down slowly or quickly is very good to differentiate. Unfortunately I have grown to realize I can’t take the CGM numbers as 100% accurate. A few weeks ago I had trouble getting my blood sugar down most of the day. Before I went to bed my CGM said I was “high” meaning >400. I took a large correction dose of insulin and checked my glucometer as well. I was actually at 214. Too much time had passed to cancel the insulin bolus but I was able to set a 0% insulin delivery rate for the next several hours. Avoiding hypoglycemia, I was able to rest with no issues. Problems like this happen often. My CGM tells me I am high, low, or at a good value only to find out later that this is just plain wrong. While the numbers are often incorrect, the arrow is always correct so I still see benefit to continuing its use.

Interestingly an research study recently came out confirming this. The ADA Diabetes care journal presented this and the study is summarized here for those who hate reading research journals. Only 6 of 18 tested CGM systems were found to be accurate (within 15% for blood glucose values >100 mg/dL) for all 3 study trials. I have contacted Dexcom about this issue before and while they try helping by replacing sensors, transmitters, and updating the receiving app, the results are always the same. Part of the issue comes from the very basic misnomer.

Blood sugar can only accurately be measured with a sample of blood. The CGM devices measure interstitial fluid (fluid between cells and outside of the circulatory system) glucose and estimate blood sugar values. There is also inherent risk for superficial infection and abscess (I have had both) from leaving any device sticking into your skin for days at a time.  Leaving a device in your blood stream for an extended period of time can have much worse complications and why this is typically done by medical professionals. For now, this is the best option we have and I am still grateful for it.

At the end of the day the life of a diabetic today is better than it was 10+ years ago. I still have my gripes but with wearable technology, we are allowed to make treatment choices on the fly. We can be warned as we are heading for trouble but before we get there. We are still making improvements but it can seem slow at times. Blood, needles, shots, infusion sets, and skin tape are “normal” today  but maybe not in the future. As Scott says in his July 30th blog post, “It is not normal!”

 

-PS-

My wife is a trooper and I really appreciate all she has done for me. She has been with me at some of my best and worst times and without her, I know I would not have survived.  She celebrated a birthday this week so I wish her a very Happy Birthday and thank you!

Unaware

I’m currently in my second year of PA school which means I am in month long clinical rotations. I have seen a vast array of diseases, patients, and situations but one thing still bothers me. Seeing a patient unaware of his or her own disease and how to deal with it is very frustrating. A patient who had a broken bone fixed doesn’t have to understand in great detail what happened 2 years ago with the surgery. She knows the bone was broken, the surgeon fixed it, and now she is better. Chronic disease is different and a patient must understand their own disease and how to deal with it on a daily basis. A heart failure patient may not understand why he must avoid excessive salt in his diet but he does so knowing he will feel better.

I have come across a large number of diabetics who do not seem to understand their own disease and how to treat it. One type 2 diabetic didn’t seem to be concerned that she had lost 70 pounds in under a year without any major changes. She was concerned about her belly pain and GI issues but not about her last A1C of 13! I encountered a type 1 diabetic who read the following Gatorade label and took insulin based off a carbohydrate total of 28g per serving.Gatorade Label

These are only two examples of poorly informed and wholly unaware patients. The first patient was suffering from gastroparesis as a result of chronically elevated blood sugar. The second patient was confused why he became hypoglycemic following the insulin dosages he calculated. He did not know the “total carbohydrate” value included all values below this heading including “sugars”. Both patients  were experiencing complications of diabetes that could be avoided with simple education.

Many diabetics do not see endocrinologists for their disease maintenance and are managed by family medicine or internal medicine practitioners. There is no reason to believe a provider in any of these three areas is incapable of providing adequate care, education, and resources for diabetic patients under their care. Regardless of who patients see, the patient’s understanding and compliance to treatment protocols should be the ultimate priority. If you have a question about care, treatment plans, risk for complications for yourself or a loved one affected by this disease the first place to look is with your provider. Good providers will do their best to answer all of your questions but great providers will also set you up with colleagues. Diabetes educators are a great resource and typically have much more time allotted to explain things and allow for questions. 

Shortly after my diagnosis I remember meeting with a diabetic educator nurse for an hour or two. She provided a lot of information but it was a single meeting and I was turned free. I don’t think meeting with a diabetes educator should be a single event following diagnosis. After seeing the lack of knowledge in many diabetics I think it would be best to have follow up visits until the patient is really comfortable with all the material. I have been fortunate to study in the medical field and have learned many things regarding diabetes I would not have known had I not been in this field.

I remember seeing my endocrinologist for the first time after my diagnosis and being given a prescription for a glucagon pen. I knew it was for severe hypoglycemia events but not much else, which is why I took it with me to the grocery store a couple times in the first couple of weeks after the appointment. It never occurred to me I would have to explain how to reconstitute the vial and then explain where to inject it to a stranger all while in the middle of a hypoglycemic event. I lived alone so there was no one who would be able to give me the injection if I really needed it but I didn’t understand this at the time. Thankfully the only time I have ever needed glucagon was 7 years later and my wife knew exactly what to do.

As with many things in life, ultimately we have to be our own best advocates in order to succeed. If you need help don’t be afraid to speak up and ask for it! You may be surprised where you end up as a result.

Insulin as a Right?

Healthcare is something I am passionate about. Healthcare coverage is extremely important but it is something that like many others was never very important to me until I needed it. Today as a type 1 diabetic, healthcare is a requirement to keep from terrible secondary disease and if left untreated, death. While it is a very broad and complex topic I want to focus on the effects to type 1 diabetics specifically.

USA today published an opinion article that provided some perspective. The short article discusses Shane Patrick Boyle who died after running out of insulin while caring for his dying mother out of state. A more comprehensive article about the situation can be found here. I know some will argue he could have acted differently and may not have died but we miss the central issue here. Victim blaming has increased in recent years which is why I only want to focus on type 1 diabetics here since they are not to “blame” for a preceding unhealthy lifestyle as often associated with type 2 diabetics. It is easy for Monday morning quarterbacks to talk about how the game should have gone on Sunday if the team would have just done this one OBVIOUS thing… Prevention is not a concept western medicine has adequately covered yet and Shane Patrick Boyle’s untimely death only helps to prove this.

When I first read the title of an opinion article I immediately disagreed: “Insulin is a human right for me, all diabetics. We need to make medications free to those who need it“. It wasn’t until later in the article when it made sense to me. As the author writes:

“If the “right to life” is a basic human right, then insulin is a human right for a diabetic.”

When stated in this manner it begs consideration. Without this medication, a type 1 diabetic will die within a very short period of time.  I can say I personally try staying active, eating right, and secure my own health insurance but what happens when I am between jobs? What happens if I move out of state? Is there any precedent for specific diseases being covered?

 

Kidney Disease as an Example

If we look at End Stage Renal Disease (ESRD) as an example we see that insurance coverage for a specific disease has already been established. In 1972 the Medicare Kidney Disease Entitlement bill was signed allowing coverage for ESRD. (Here is a link to an article discussing how and why congress enacted this game changing bill.) There are many instances that allow an individual to use Medicaid for different reasons including income status, kids, pregnant women, the medically needy, and specific disabilities but ESRD is also included. Patients with ESRD typically have two treatment options: 1) Dialysis or 2) Kidney transplant. Kidney-Transplant-Cost-Savings

The obvious third option is to do nothing and die but thanks to the 1972 legislation patient’s have an option to treat without worrying about cost. There are several ways to secure healthcare coverage but depending on the case’s circumstances, a patient with the diagnosis of ESRD can have coverage for treatment in 1-4 months which is very fast compared to normal waiting periods. According to a New England Journal of Medicine Article the majority of ESRD cases are associated with diabetes. (I understand there are far more cases associated with Type 2 vs Type 1 but stay with me…)nejmcp0906797_t2

 

What About Insulin?

With the increasing cost of insulin and the ramifications of these changes we have to look at this issue. There is clearly precedent to treat for the extremely high costs associated with ESRD and if the the majority of cases stem from diabetes complications, then why not work to prevent disease and complication progression? Managing diabetes is expensive (about $16,000 per patient every year according to American Diabetes Association) but the expenses of this single complication associated with poorly managed diabetes disease can cost from $75,000 to over $350,000 in just 5 years so why not promote the preventative approach? There are many possible answers to this question and it is up to each of us to make that decision. Diabetes is only one of many possible diseases we can discuss with this type of question but at the heart of it I think the answer is simple. In the USA for a type 1 diabetic, insulin is required to live. The Declaration of Independence states our unalienable rights are “Life, Liberty, and the Pursuit of Happiness” given to each human and as a responsibility of our government to protect. As such, I believe insulin treatment should be available to every single type 1 diabetic patient regardless of insurance status, monetary means, or social situation.

What do you think?

 

6 weeks on the pump

I am beginning my 6th week using my insulin pump and things have been going well. I have been surprised at how easily the transition has been but I’m still getting comfortable with everything.

IMG_9187

Startup

Under direct supervision of my trusted associate Zorra (seen above) getting up and running was very easy. Prior to beginning I met with a Tandem Diabetes representative to calculate estimated basal rates, correction ratios, carbohydrate ratios, and a target glucose value. This was all confirmed with my physician and I was up and running.

Changing out cartridges and switching sites every three days is fast and easy  but I hate wasting any remaining insulin in the cartridge. With previous insurance plans insulin was a commodity not to be wasted so I always try to get the most out of my supply.

Past Struggles

When I first moved to Iowa I cycled between two jobs every 6 months. At that time I had 6 month waiting periods before preexisting conditions would have coverage. This meant I had no prescription benefits for insulin (~$750/month for Novolog and ~$750/month for Lantus) or test strips (~$120/box of 100) every month. This is following coverage that cost me $60/month for the Novolog ($25), Lantus ($25), and test strips ($10/200 strips). I still remember standing shocked at the pharmacy counter in downtown Des Moines telling the pharmacist I couldn’t pay for it all. She was very generous and being a type 1 diabetic herself offered me all the test strips she had in her purse at the time. I thanked her but insisted I would be fine and ultimately purchased the Novolog alone. Being young and not fully aware of options and complications, I only took short acting insulin for the next several months and conserved test strips as best I could. At that time you could purchase a new glucometer for $10-20 and get 10 strips with each new meter. I also received numerous samples from the generous endocrinologist’s office. Ultimately my glucose control was compromised and my A1C suffered. Being frustrated by all of this I decided I would purchase my own private insurance policy but I was denied immediately due to my previous diagnosis of Diabetes. Eventually the Affordable Care Act provisions were enacted and my coverage was able to begin on day one of the policy. Regardless of the totality of Obamacare’s success or failure, the provision prohibiting insurance companies from excluding preexisting conditions was a huge step for type 1 diabetics and I am grateful. Now off my soapbox…

Tethered

One of my concerns about using a pump was being attached to something and I can say that was both good and bad in my short time using it so far. When doing hospital rounds and moving through clinics on busy days it has been great to check my current status and take insulin with a just a couple buttons pushed. No need to get out my glucometer and insulin kit, place a needle on the insulin pen, select the correct dose with clicks, expose a spot on my abdomen, inject, remove the needle, and place everything back into my kit. With the pump’s preset target glucose value I can manually enter my current blood glucose value and it will calculate the exact dose necessary to get back down to the target range. Using an insulin pen you can only work with whole units of insulin (1, 2, 3, etc.). On the Tandem pump I can administer partial units of insulin down to the hundredths place. (1.11, 1.12, 1.13, etc). Because the pump knows where I want to stop, it makes the necessary calculation. Unfortunately at this time even though the pump knows my current blood sugar value, the current number must be manually entered prior to calculating. Dosing on the run has never been faster for me which is amazing.

Mishap

I had one mishap relating to the tubing which reminded me it’s still not a perfect set up. Normally I tuck the excess tubing between the infusion set and the pump into my waist band. One night after changing sites I left the tubing out. I had no shirt on and was walking into the hall on my way to put the supply boxes away. The tubing caught on the door handle and  before I knew it, BOOM! The entire infusion set was pulled out of my skin. Adhesives used on the infusion sets are pretty good and removing each set is usually not uncomfortable after wearing it for three days. When the adhesive is only 2 minutes old its less fun. Honestly I was more upset about losing the insulin in the tubing when I had to switch it out.

Pro Tip

Anytime something like this happens, call the manufacturer (not your distributor). I called Tandem Customer Service, explained what happened, and after a short call the rep reassured me he was sending a replacement. I had another infusion set with me but at the end of the month I was going to be short and insurance does not typically waver on dates for refilling. The bonus for me was that the rep sent a box of 10 infusion sets rather than a single one as he explained its not uncommon for this to happen so now I was covered if it happens again. I have had similar experiences with Dexcom Customer Service and while they only send a single sensor for a mishap, it is typically by expedited shipping.

 

Overall I have been happy with my transition to an insulin pump but I want to hear from you.

Do you have any stories about mishaps? Share below!