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!

 

To pump or not to pump…

For more than seven years since my diagnosis I have been confidently opposed to insulin pumps. I have had my list of grievances ready for anyone who asks too:

  1.  I don’t want to be attached to anything
  2. They are expensive to purchase
  3. They are expensive to maintain
  4. As soon as I purchase one, a better version is bound to be released
  5. They are unsightly

I have spoken with others who think similarly to me and don’t want to be constrained to a device with tubing and sensors. When it came down to it, many of us felt that using pens was less cumbersome. Using insulin pens allowed me to live as anyone else would. I took injections when I needed to but other than that I was just an average guy. This concept of no physical attachment is apparently known in the diabetes community as going “Naked” and you can read about it from another diabetes blogger here. Frankly it sounds like a weird term and surely one to raise eyebrows when discussing it but I understand the sense of freedom associated with the concept. This is one of the major reasons I have been opposed to insulin pumps.

Using pen needles is not without it’s own issues. One of my major problems was taking the time to inject, especially when eating around others.

“Can I grab my supplies and head to a bathroom discreetly?”

“I don’t have enough time or privacy to give myself an injection right now because of (fill in the blank). Can I wait to take my dose of insulin?”

“Would the people I’m eating with be uncomfortable if I pull out my insulin, load a needle, and give myself an injection right here at the table?”

These questions constantly plagued me and back in my dating years added a whole new dimension to establishing a relationship. One of the best things that happened to me occurred after eating with a childhood friend of mine, Scott. He and I have been through a lot together over 20+ years and I don’t remember having much hesitation injecting myself in front of him. Being the oddball that Scott and I both tend to be, he loved it. He made some joking gesture about it and asked me if I ever took an injection into my jugular.

No.

I informed him I have never taken a shot of insulin in my jugular vein and did not plan to . Regardless, anytime I injected from then on he would make a stabbing motion to his neck and say something about “the jugular”. While his complete disregard for treatment guidelines were entertaining, his approach effectively put me at ease knowing he was not uncomfortable when I treated in front of him. Eventually I realized I probably made more of an issue when treating in front of others than they did.

Dexcom

In 2016 I began using the Dexcom Continuous Glucose Monitoring (CGM) G5 sensor. I had been curious about CGM technology and wanted to give it a shot. The glucose readings are updated every 5 minutes but most importantly they show a trend arrow giving direction. Rather than seeing a reading of 85 and being happy, I was now able to see if I was at 85 and rapidly descending, ascending, or stable. Besides this awesome extra information, the unit was able to connect to my phone via Bluetooth so I did not need to carry around any additional items. With the Dexcom app I was also able to share my readings to my wife in real time.

bg-share-glucose-g5-750x500_c

The phone and and sensor on the left is what I had on me and the phone to the right represents what my wife sees on her phone. This came in very handy when I would go on long runs alone.

As with any wearable device I ran into issues getting the unit to stick. Although each application is supposed to last for 7 days and is intended to get wet with showering, exercise, or pools, mine never stayed on. After doing some research I came across a YouTube video and adapted the technique for myself. Once it was perfected I can tell you I was able to keep one sensor in and functional for 3+ weeks regularly but it has risks. I am very careful to clean my skin with both Hibiclens and then alcohol prior to each injection. Over the course of the first year I did develop an infection after leaving one in place far too long so it is not recommended to do this. ( I wanted to see how far I could take it) Another benefit to Dexcom was their amazing customer support. Anytime I had an issue or if a sensor/application did not work properly the company would send another one free of charge. I had multiple calls in to customer support and they always helped diagnose the problem or replace the problematic device. Ultimately my insurance plan changed and I was no longer able to continue using the Dexcom CGM.

Pump

This brings us back to the idea of using a pump or not. (I didn’t forget about the purpose of this post). After much thought and going back and forth I have decided to proceed with my first insulin pump. I have chosen to start with Tandem Diabetes t:slim X2 pump.

dec2016-tandem

I am still opposed to being attached to a “pager” and tubing but I like the idea of not having to carry around insulin pens, screwing on needles, and trying to discretely inject. It is certainly an expensive undertaking especially in today’s insurance market. One benefit to this pump is that it can be updated when new software or features become available so I won’t be stuck necessarily. At this time Tandem does not have FDA approval to suspend basal insulin if the patient has low or trending low glucose values. As soon as the FDA approves this in the next few months, updates will be released and my pump will be able to add this feature. I have again started back on the Dexcom CGM and these two devices will interact and give me the ability to more tightly control my diabetes than I ever have.

 Components have been ordered and I am supposed to meet with a rep and learn how to use everything tomorrow. I will make another post once once I figure out what the heck I am doing.