The Day My Insulin Pump Outsmarted Me

I stare at Gizmo, my insulin pump. I review its user settings, and basal and bolus rate set-up. But nothing within this gadget tells me how to change my reservoir numbers.

Yes my body is no longer producing enough insulin. And yes that means I must use more insulin to function on a daily basis. My basal rates have increased from .325 to .900, and my bolus rates have increased from 1 unit of insulin per 20 grams of carbs to 1 unit of insulin per 13 grams of carbs.

When my roommate a few years ago told me her basal rates were 1.000 unit, I scoffed and hoped I would never reach that level, at least not for another five years. But now having only had diabetes for six years I am now almost there.

The downside? I’ve been switching out my pump’s reservoir every two days. It used to be that 100 units of insulin would last me three days, if not four. And in the past month, it’s only lasted me two days. Continue reading

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Needles, Reservoirs, Cannulas, and More

The other day I was replacing my insulin pump reservoir. This requires a series of steps that I will reiterate for those who have never had to replace their insulin pump supply (as a side note, manufacturers, physicians, and researchers alike recommend switching this supply every three days although I sometimes stretch mine to four).

Replacing my Insulin Pump Reservoir

The first thing one needs is an alcohol swab, reservoir, infusion set, a blue cylinder-shaped device to inject the infusion set underneath the skin, and of course the insulin and pump. So after wiping the spot on my stomach with alcohol and then the top of the insulin vial, I use the reservoir to fill the plastic insulin container with insulin from the vial (it’s important to make sure you remove all air bubbles from the plastic container). And then of course my cat knocks the vial from my desk (it’s small enough this is harmless).

I then twist the reservoir into the end of the infusion set. I rewind the insulin pump so that it knows there is zero insulin inside and can essentially start to recount my usage (I tell it I use 100 units per new supply). I place the new reservoir into the insulin pump and then fill the 23-inch thin plastic tubing of the infusion set so that I know insulin will safely travel through the cannula from the pump to underneath my skin (this usually requires 6-9 units of insulin per fill). Continue reading

The Future of Diabetes Management

“I imagine being diagnosed as an adult would be harder because you remember life without it.”

“Yeah.” I nodded at the woman to my left, mother to an 11-year-old with Type 1 diabetes (T1D).

We were both first-timers to the JDRF TypeOneNational 2015 DC Research Summit yesterday. While many parents of children with diabetes attended the day-long event, I was among some of the adults who had been managing this disease for years.

I’m about to celebrate my sixth anniversary with this disease, one year closer to a decade. It’s hard to believe I’ve been managing the disease this long – it’s even harder to believe that I have many years to go. But like speaker Tom Brobson, national director of research investment opportunities at JDRF, reminded us, if we had all been diagnosed one hundred years ago, we wouldn’t have survived a month.

I’d like to believe on the starvation diet I would have lasted a little longer, but he was right about one thing – we’ve come a long way technology-wise. And for that I am thankful. William Tamborlane, chief of pediatric endocrinology at Yale University and deputy director of the Yale Center for Clinical Investigation, familiarized us with the “blue brick,” the first insulin pump device introduced in 1979. It would take another 20 years before the insulin pump would actually take off.

And Jessica Roth, senior director of health policy at JDRF, reminded us of the importance of advocacy. It’s not enough to have all these research advances such as ViaCyte, Smart Insulin, and the artificial pancreas without the ability for people living with this disease to have access to these treatments. It still pains me that Medicare refuses to cover the continuous glucose monitoring (CGM) system for those over 65. Continue reading

Just Another Emergency Room Visit

The only time I’ve ever been admitted to a hospital was when I was diagnosed with Type 1 diabetes back in 2009. In the 22 years before then (besides being born), I’d never had any reason to visit a hospital. I’d never had a broken bone, an allergic reaction, or injuries sustained from sports (except for the one time I caught a softball with my bare hand or when I crashed into a teammate while trying to catch a ball in the outfield – she went to the hospital with a concussion; I iced my jammed thumb on the bench).

But upon reading one of the recent Narrative Matters essay from Health Affairs about a doctor’s perception of the emergency department as a patient, I was reminded of the two times I visited the emergency room due to diabetes and how I hope I will never have to return.

I used to date someone who worked in one of the many emergency departments in Cincinnati. I have a brief understanding of the chaos and stress the staff undergoes on a daily basis. I feel for them and have no complaints about how I was treated the two times I had a seizure as a result of hypoglycemia and was sent to the emergency room via ambulance.

But from a patient’s point of view, it was one of the most lonely and degrading experiences of my life, so much so that after my second seizure when the doctor wanted to admit me for further testing, I disagreed and persuaded him to discharge me. Besides the occasional vertigo, I didn’t sustain any injuries from the seizures, but that doesn’t mean I made the right decision. Continue reading

Rising Health Care Costs: The T1D Label

I’m nervous about the future of health care in this country, especially for type 1 diabetics like myself. I was diagnosed almost five years ago at the age of 22. I have no family history, and there was no evidence of an autoimmune attack so the doctors do not know why my pancreas just stopped making insulin. But it did.

Many researchers point to a combination of genetic susceptibility and environmental triggers. With the amount of chemicals plaguing our food and our household products, that’s not so surprising. But then why, among my two brothers and a mother and father, was I the only one that contracted diabetes? When I was diagnosed, my parents were surprised, mostly because out of everyone in our family, I was the only one who made a daily, concerted effort to eat right and exercise. What was it for?

This is a question I no longer ask, and I am thankful I have employer-sponsored health insurance that will cover the cost of my expensive disease. But when it comes to health care, I am one of “those” who potentially costs the system. I fall into the “high-risk pool.” From an evolutionary perspective, I should have been weeded out of the population five years ago. But here I am.

Even though I am no longer considered “young and healthy,” I still consider myself “young and healthy.” I manage my diabetes well with an insulin pump. I maintain an A1C of 5.6 (average blood sugar readings over the last 90 days). My average daily blood sugar readings range from 70 to 160. I still have bad days, and if I had a continuous glucose monitoring (CGM) system, I’m sure it would show a higher range, but when you have to survive on animal insulin injections and carb estimations, how much do people really expect you to get it perfect?

I’m thankful for the insurance I have, which allows me to afford my insulin pump supplies, my test strips and insulin doses. There was a time when I didn’t have coverage, when I had to pay for my “life source” out-of-pocket, and suffered the consequences (financial and physical). I’ve endured a health insurance roller coaster in the past four years. Continue reading