Today, we continue interviewing the 10 winners of this year's Patient Voices Contest who will attend our annual Innovation Summit in early November. Please say hello to Claire Pegg in the Denver area of Colorado.
After misdiagnosis as a type 2 more than two decades ago, Claire was eventually diagnosed with T1D and later saw signs that led her to diagnose her own father, who had also been misdiagnosed. She now has the challenge of helping take care of him as he's developed dementia.
An Interview with T1D and Caregiver Claire Pegg
DM) First, tell us about your diabetes (mis)diagnosis...
CP) I was diagnosed at age 24 in April of 1997. I had been steadily losing weight with no effort, dealing with extreme thirst, lacking energy and my vision became blurred. My mother had a second cousin who was type 1 and said that my breath smelled the same as her's. I went to see a general practitioner who sent me for a glucose tolerance test where my blood sugar registered over 700.
Unfortunately due to my age and weight, I was diagnosed as type 2 and prescribed Glucophage. After a few months I found myself seriously ill and in the hospital where I was started on insulin -- mixing Regular and NPH shots twice a day. I was not told I was type 1 for another six years (!). Rather, it was implied that I was not working hard enough to keep my blood sugars controlled.
In 2000, I started at the Barbara Davis Center Adult Clinic where a C-Peptide test confirmed that I was not making insulin and was, in fact, type 1. In 2001, I tested my 67-year-old father's blood sugar with my meter after he complained of thirst and blurred vision and he tested at 450. Incredibly, he was also misdiagnosed as type 2, and a C-Peptide test years later confirmed that he was also type 1.
Wow, so you diagnosed your dad yourself?
Yes. It was a really awful, educational experience. He lived across the street from me on his own and had seemed in pretty good health, but then mentioned one day that he'd been having a hard time thinking and that his vision was blurry. When I asked him if he had been really thirsty he said that he had been, so I tested him with my meter and came up with 450. At that point he was extremely independent and able to get to the doctor on his own for a diagnosis. I simply did not know then what I know now, and when his doctor came back saying he was type 2, I didn't even think to question it.
How did your dad handle the news?
That diagnosis for my dad was devastating. He's always been an extremely picky eater and has subsisted mainly on meat, bread, potatoes, milk and cookies. Modifying that diet to reduce carbs was difficult. He was taking his oral meds faithfully and had drastically reduced his carbohydrate intake, but it seemed as though he couldn't get anywhere with lowering his blood sugar. His endocrinologist was treating him as though he was 'non-compliant,' which was miles from the truth. Dad's blood sugar records and carb counting were as exact as could be, as befitting his mathematics/programmer background. I would even call him at times for carb counts for foods I wasn't sure about.
He still felt very unwell and his vision was getting really blurry. I asked my endocrinologist at the Barbara Davis Center if there was any way I could get my dad in to see him. That wasn't possible, but he told me to insist on a C-Peptide test for my dad. That test showed no insulin production, so my dad was started on insulin immediately. I so wish I had challenged his initial diagnosis, but I only took a serious interest in diabetes specifics when I decided to start a family and have only been really on top of things the past five years or so. I didn't know enough then.
Did that mutual D-diagnosis influence your relationship with your father?
Having Dad taking insulin changed our relationship drastically. I learned to advocate for him when his HMO decided the best regimen for him would be shots of Regular and NPH insulins. Having experienced the ticking time bomb that was NPH, I had to gather information to present to his medical team who were completely unfamiliar with both basal (Lantus) and fast-acting (Humalog) insulins. I had to teach Dad how to administer shots, how to figure active insulin time and correction boluses. Our roles really changed around this time. He has often said how lucky he was that I got diabetes first so that I could help him. He also jokes that diabetes runs in the family because I gave it to him. We really did bond over having the same experiences.
Dad did really well for a while. When I got my first CGM, he was inspired to fight his insurance so that he could have one as well. He developed a routine and managed beautifully with counting carbs and a sliding scale. He still reached out to me when he was either low or really high to help him figure out what to do, but otherwise managed his disease very independently.
And then he was hit with a second diagnosis...?
About four years ago, he started having a hard time remembering things and was finally diagnosed with dementia. Things have gone downhill for him cognitively rather quickly. Currently his dementia has progressed to the degree that he can't deal well at all with any changes to his routine, and his short-term memory is very poor.
He's now in an apartment five minutes from me. I've taken over almost everything for him: paying bills, scheduling appointments, cooking meals and labeling them with carb counts. I insert his Dexcom sensor for him and help manage his blood sugar and insulin doses. I have hopes of being able to follow his Dexcom remotely one of these days, but his cell phone isn't capable of setting up Share and switching to a different phone would be too traumatic for him. I know Dad will wind up living with me at some time in the future, but for now he still highly values what independence he can have so we work together to try to keep that for him. He has his good days and his bad days, and my husband and kids are really fantastic about helping Dad out whenever they can.
What do you do professionally?
I got halfway though a Speech Communication/Technical Journalism degree at Colorado State University before leaving to begin a career as an on-air radio personality. After that, I worked in the travel industry as a travel agent and airline staff travel coordinator, then my husband and I took over his grandfather's tree farm in 2000. The recession hit us hard with the full stop on new construction, so after our farm ceased operations in 2008, I began working as a professional voice-over artist, which I still do as well as work as a materials dispatcher at Anythink Libraries.
Wow, that's quite a varied background. Any observations on how advancing diabetes tech may have changed your life over the years?
I started testing my blood sugar with a meter that required a drop of blood on a test strip pad without touching the pad. Meters have gotten much easier to use, but with almost no standards for meter accuracy, it's difficult to trust them. I thrive on using cutting-edge technology like CGMs and pumps.
In 2017, I began a year-long study testing the Medtronic 670G hybrid closed loop insulin pump, which I'll be using until the study ends in October 2018. Then I'll go back to my previous Minimed 723 pump. But I do know that technology can exclude people like my dad, because he struggles with dementia and other aging issues like manual dexterity. My dad uses MDI with Lantus and Novolog and a Dexcom G4 CGM to manage his diabetes.
What do you believe the diabetes industry could do better?
Recognize that there is no one solution for everyone. People vary, their needs vary, their levels of privilege vary, and more needs to be done to make a variety of options accessible to all people so that they can have the opportunity to explore what works best for them. That said, I think coverage of CGMs should be universal for all people with diabetes of either type so that information to make the many vital decisions that have to be made daily is available. Fingersticks cannot compare to a live graph that shows current level and direction of blood sugars in order to make treatment decisions.
How did you first get involved in the DOC (Diabetes Online Community)?
I was extremely excited to take part in the Medtronic 670G study, but was sorted into the control group, which meant that I used the pump without the sensors or closed-loop components for the first six months. To try to best prepare myself for the closed-loop component in the second six months, I joined a Facebook group dedicated to helping people who were using that system. From there, I saw references to Nightscout and Dexcom groups, and started following the Wednesday night #DSMA chats on Twitter. I recently started my own Facebook group for alumni of the Sotagliflozin study to share news about that medication's journey to FDA approval.
Wow. So what is your particular passion as far as diabetes advocacy?
I advocate in my daily life by being a visible person with diabetes and answering questions and encouraging conversation. I test my blood sugar and calibrate my CGM openly and challenge misconceptions and stereotypes kindly but firmly. I start conversations online about senior citizens with diabetes and the challenges that they and their caregivers face.
OK, what's your take on the biggest challenges in diabetes at the moment… go…!
Right now, our type 1 population is living to greater age than ever before, but there are very few systems in place to support senior citizens with diabetes. How do we take care of someone with type 1 who can't remember if they've taken their shot? How can someone with limited manual dexterity operate an insulin pen? How can a person of a generation not comfortable with electronic technology handle an insulin pump or CGM? Nursing home staff for the most part are not trained or willing to assist in carb counting or CGM calibration and so try to limit patients' regimens to eliminate all variables in diet or exercise or timing, leading to a very tedious existence that can still be problematic.
What are you most looking forward to at the Innovation Summit?
I'm thrilled to be getting to meet at least 9 other humans who fight the same fight I do, day in and day out. Other than my dad I don't know any other people with diabetes in my daily life, though I'm grateful for online diabetes buddies. I'm also really excited to find out what options are on the horizon for diabetes treatment and to get the chance to present the perspectives of both a diabetes patient and caregiver to decision-makers and innovators.
Thanks, Claire! We are looking forward to having you as a valuable addition to the annual Summit.