Pump site rotation has long been an issue for me, and it's a common one for many PWDs (people with diabetes) that can cause all kinds of craziness when it comes to scar tissue, insulin absorption, and erratic blood sugar levels.
A pumper for 11+ years now (not counting my current pump hiatus), I've tried a variety of options -- keeping notes of site rotation in my logbook, on a whiteboard calendar, sticky pad notes on the fridge, and even e-alerts and device alarms to help me remember. Surprisingly, most pumps do not have an option to set a site-change reminder alert on the device itself (why not, pump engineers?!)
So nothing I've tried has been effective for me, as I either slack on tracking them or get tired of the annoyances.
But now, D-Mom Mary Anne DeZure in Oshkosh, Wisconsin, has come up with a creative way to help people like me better remember when it's time for a site change. She calls it Time for Change (the name is even trademarked!), and it's gaining steam in the diabetes community.
Today we're talking with Mary Anne, whose son Lou was diagnosed about seven years ago, which kick-started the idea for her little business that she's trying to get off the ground. While her solution is still in the prototype phase and not yet being sold, we thought this emerging new product is a great fit for our Small But Mighty series on diabetes small businesses!
DM) Can you start by telling us a bit Lou and his diagnosis?
MAD) Lou was diagnosed just two months before his 15th birthday. He turns 22 on Dec. 15. (Happy Birthday tomorrow, Lou!). For about two weeks, I had noticed the classic symptoms of diabetes, but I didn't know they were symptoms. I didn't know anything about diabetes at the time. There was no history of diabetes in either mine or my husband's families. In 2005, diabetes wasn't advertised on TV and in magazines the way it is today. We also have a daughter who's now 25, and Lou's the only person diagnosed in our family.
I noticed Lou was drinking to extremes, whatever he could get his hands on -- water, juice, soda, milk. Then he'd be up four our five times a night to use the bathroom. He was always exhausted; not just tired, but exhausted, even after a good night's sleep, and he was crabby and quiet. These symptoms could be explained away as normal for a hormonal teenager, but when I noticed the final symptom, I put them all together and realized something was really wrong. It was the weight loss. His face looked gaunt, he had lost weight so fast in such a short time. His pants literally fell right off him.
Did you rush him to the hospital?
Not immediately. The next day, I got Lou in after school to see his pediatrician. I had such a bad feeling about the visit, I had my husband, Dan, meet us at the doctor's office. After a quick urine test, the doctor had us run over to the hospital for some blood work. By the time we got back to her office for the results, she had called Children's Hospital in Madison, WI, to reserve a bed for Lou. She came in to the office and blurted out, 'Lou has (type 1) diabetes.' His blood sugar was 700.
When she started to talk about daily shots for the rest of his life and the complications and changed lifestyle of diabetes, Lou pulled his baseball cap down over his face and hung his head. He became despondent. We had to go home and pack to drive the 90 miles to Children's Hospital. While Dan and I were frantically throwing clothes for the three of us into suitcases for a week's stay and watering and feeding the cat, Lou buried himself under the covers in his bed. He was angry and scared, and was screaming that if he went to the hospital he would die and never come home. He was terrified. He couldn't understand why this was happening to him. We couldn't coax him out of that bed. I had to wrap my arms around him and drag him to the door, begging while sobbing myself and making promises I really didn't know would come true.
We spent the next week at Children's Hospital. One of the doctors told us that if Dan and Lou had gone on their hunting trip that weekend as planned, Lou probably would have died in the woods because his body was deteriorating so fast. Lou was started on three shots of insulin a day.
Your idea is about changing pump sites... Did Lou struggle with becoming a pumper?
When Lou was upgraded to an insulin pump in 2007, we kept a log book on the kitchen counter to record the day he changed his site and when he should change it again. At first, we were really dedicated to following the log. Then, as wearing a pump became second nature to Lou, and he was responsible for keeping track of changing his site on his own, and the log just sort of became forgotten. I couldn't keep track of whether he was changing his site on time or not. Sometimes his pump would stop working, only to find out he hadn't changed his site for a week. Being a teenager, Lou didn't appreciate the consequences of not taking the time to change his site.
So how did you set out to solve this infusion site problem?
Out of frustration and fear, I had this idea for making a timing device to stick on the refrigerator so we could all keep track of Lou's site changes. By taping and gluing odd pieces from the junk drawers, I came up with the first version of what we called 'Time for Change.' We kept it on the refrigerator, as a constant reminder of Lou's schedule for changing his site. He was really good about turning the dials to the next due date. And the whole family was really good about being his support group. Every time someone opened the fridge on the due day you'd hear, 'Lou, change your site.'
We used the homemade Time for Change for about a year until I saw a story on the news about the FAB LAB at Fox Valley Area Tech in Appleton, WI (an inventor's workshop). I went to an open house for inventors, where I met the team that helped me get the first prototype made. Once I held that first prototype, I was encouraged to have 20 colored prototypes produced to be used by a focus group of other diabetic families who participated in the annual JDRF walk for a cure. The group loved using Time for Change. That's when we knew for sure we could make a difference in the lives of other diabetics.
How did your family come up with the device name, and what does it mean to Lou?
Lou named the device. I asked him why chose Time for Change, and he said: other than the obvious reason for time to change his site, he said it was personal. He said this is his time for taking full control in managing his diabetes and it's time for the world to find the cure.
So you're starting a business venture... will this be a full-time gig for you and your family?
No, I unfortunately won't be quitting my day job anytime soon! I'm the Facilities Management Office Manager at the University of Wisconsin, Oshkosh, and have been a state employee for 27 years at both UW Oshkosh and Oshkosh Corrections. My husband, Dan, is a retired journeyman painter who also worked for UW Oshkosh and UW Milwaukee for 27 years. I started this whole thing for Lou's sake. The intent has always been to change Lou's life and his future, as he's the one who has to pay the price every day with managing his diabetes. Dan and I don't want to do this to make money for ourselves. We do this for Lou.
Where do things stand now, and what are your hopes for Time for Change?
The only thing that's stopping us from going into full production is funding. Just starting out, I only have quotes for a small first production. Each of the two molds will cost about $27,850 for the hourglass and the keychain versions. Then to produce 5,000 each, the price per timer is about $2.60. The piece price would go down considerably if I could order a larger quantity or find a more competitive manufacturer.
As your readers know, having a diabetic child changes everything, especially finances. We're simply out of money. I started the Indiegogo campaign, Just For Lou, to raise the funds to purchase the molds and produce the first 5,000 timers. The campaign ends January 2, 2013.
Our greatest hope is to get fully funded so we can finish what we started. Our big dream is to launch Time for Change worldwide, putting it on the shelves in every pharmacy, right next to all the other diabetic supplies for parents and diabetics to see while they're waiting for their insulin prescriptions to be filled.
Sounds like a great business idea, and one that could help both kids and adult PWDs alike. Thanks for your creative thinking, Mary Ann! We wish you best of luck, and look forward to seeing Time for Change on the pharmacy shelf before long!