and by Susan Pierce, MPT, CDE
I am truly honored to interview one of my most treasured friends and colleagues, Susan Pierce, MPT, CDE, who has worked with me since 2002.
Q. You were diagnosed with type 1 diabetes at age 10 in 1981. Your dad was a doctor and your mom was a dietician. Was it harder for you or your parents to accept your diabetes?
A. Initially, they were probably more in shock than I was because they worked in healthcare and knew the ravages of uncontrolled diabetes. I didn’t know anything about the disease, so when the pediatrician gave us the diagnosis, I thought, “How long do I have until I die?” Once I stayed in the hospital for a few days and learned how to take my own injections, I thought I knew what it took to keep my sugars stable, so I faced this disease head on, whether I was ready or not.
Over the years, my parents and I, both, experienced a great deal of denial. I tried to do the best I could, but the tools that were available at the time were not the best. The only testing available to approximate glucose was urine testing. NPH and Regular insulin were the only insulin options that I had and these were clearly insufficient for managing blood sugars, so I quickly stopped trying, rather than face failure day after day. For me, better sugars didn’t become a real possibility until Humalog became available for me to use in 1997.
Q. We see adolescents and teenagers with type 1 in our practice who are pretty angry about having diabetes. I remember one teenager who threw his pump in the toilet. Did you find that there was a point of diabetes overload when you couldn’t bear to hear anything else about your diabetes?
A. Absolutely, but I seem to have tried not to remember so many of the difficult times. When I was in high school, I clearly didn’t want to hear anymore about diabetes. One of my classmates was actually diagnosed with type 1 when we were juniors. I was in such denial of my own disease that I did not reach out to her. I didn’t even remember her being diagnosed at all until she reminded me at our 10 year class reunion.
I do understand the frustration and anger because despite being a CDE, wearing a pump and sensor, I have some pretty major highs and lows, but with these tools I don’t feel like I fail all the time now. Even when I do have the highs and lows, I still keep trying because I know I can have stable sugars sometimes, and because I wake up every morning to two beautiful daughters, who need me (even though as they approach “teenager-time”, they may not think so).
Q. At the time you were diagnosed in 1981, there were no glucose monitors or blood testing strips available for patients. Did you have to use the tablets dropped in urine?
A. Yes. It was a good thing that I liked chemistry because testing your urine glucose was very much like a chemistry experiment. There were precise directions to the kit like mixing 10 drops of urine and 5 drops water into a test tube and dropping in a tablet, which made the urine and water solution bubble, fizz and then turn different colors. I always wanted blue, which meant my sugar was normal, but I always got darker green or, the worst, brown.
Q. Was it a big step that they came up with the test tapes that you could dip your urine into rather than having to use the urine chemistry kit?
A. Yes. This meant I could test my urine at school during the day. You didn’t need any of the test tubes or droppers or tablets, you just needed to hold the little paper in place as you went over the toilet.
Q. Do you remember your family or your doctor using the urine testing to help make changes in insulin amounts?
A. No. I was on NPH and regular, and I don’t remember making changes in my insulin amounts based on the urine testing. I took my prescribed insulin doses, and my mother fed me whatever I was supposed to eat on the exchange system and my sugars were supposed to be okay with that (but my sugars never seemed to cooperate).
Q. I recall seeing glucose Chemstrips® used for the first time in a hospital in the mid-1980s. The Chemstrips® required a good deal of blood and you would wait a minute and wipe and wait another minute and compare to the color chart on the vial, and which gave you your glucose range within a 60 mg/dl range of where your sugar was–did that seem like a big new step?
A. Of course! Getting some sort of idea of what your sugar was right then was an amazing step! Before this it was like you were asked to put a puzzle together but you were only given half the pieces. Even though it was still in only a range (for example, 180-240 mg/dL), it was such an improvement from getting the urine sugar which was telling you what your sugar was hours and hours ago.
Q. Before blood glucose meters became widely available, would you have believed that a day would come when you could have a meter and get a specific reading?
A. I didn’t dream too much about the future. But once the blood glucose meters came out, I mainly thought “Why did it take so long to have this?!”
Q. What of the changes in glucose monitoring was most empowering for you?
A. More than 10 years ago, the One Touch Profile meter was the biggest change that empowered me. With this meter I could not only track my before and after meal readings, but this meter had tags for each meal separately, as well as, fasting and bedtime. As a person that now has different carbohydrate ratios for each meal programmed in her pump, this was an invaluable tool for me!
In the last couple years, I would go so far to say that the Dexcom is undoubtedly the change in glucose monitoring that has saved my life. One night, a new pump I was trying released a life-threatening amount of insulin automatically. If not for my DexCom alerting and waking my spouse—I was too far into hypoglycemia to hear it—I am sure I would not be alive today.
Q. When did you decide to become a Certified Diabetes Educator?
A. I was working as an outpatient physical therapist at the time with a patient who had a frozen shoulder and diabetes. Because I had diabetes, I was curious how she managed her diabetes, because her A1C’s were really high. When she told me her doctor told her to take one injection of NPH every day for the last 17 years, I was stunned. I thought, “I can teach this woman with exercises for her shoulder, but in the big picture that doesn’t matter if her diabetes is so out of control and she doesn’t know how to change that.” At that point, I knew I needed to find some sort of job where I could empower people with diabetes.
Q. In our practice, you are known as “the office therapist” because of your unique ways of not only listening, but hearing what patients with diabetes are saying. What is a piece of advice that you would give a person with new onset type 1 diabetes?
A. Don’t be afraid of the blood sugar numbers. Your glucose levels are not a reflection of who you are! I have heard for too long how health care professionals think of patients as being “good” or “bad” based on blood sugars. This translates into people with diabetes thinking that they are good or bad based on their numbers. This must stop. Glucose numbers are simply numbers that give you stepping stones to produce better numbers. I have seen myself and too many patients get into a mental funk or depression over numbers. Dr. Levetan says the pancreas is non-compliant and that diabetes is the fault of the pancreas, not the person who gets this rotten disease. Numbers are your friend! Remember, not too long ago, we didn’t have numbers—but colors!
Q. Our clinical practice and Perle, is so fortunate to have your vision, what has been the best and worst part about having type 1 diabetes?
A. The best part about having diabetes is when a patient first finds out that I have diabetes and their comment is “Oh, so, you know!” The worst part about having diabetes is constantly trying to manage all the variables that can impact my blood sugar (carbs, proteins, fats, mild to intense activity, stress, the liver’s production of sugar because of dysregulation of glucagon, the insatiable hunger because I have no amylin which is usually co-secreted with insulin in both basal and bolus amounts, malfunction of other islet hormones, temperature, sleep, and probably 5 to 10 other variables that I have no clue about it this time.
Q. What would it be like to wake up in the morning without diabetes?
A. You mean, to not wake up every morning and immediately think “what’s my sugar?” Quickly followed by “What have I done wrong this time?” It would be utterly amazing to be at peace with my blood sugar.
Q. You have been working with me now clinically, academically and in research for nearly 15 years and have one of the most enlightened minds I have met, what are your thoughts on how we have progressed on our thinking of how to achieve to insulin independence?
A. Over these years, the research has found a more direct path to the goal of insulin independence. It has been like a journey of trying to relocate a familiar home for your childhood. At first, we only knew the area in which to look, but then we proceeded to the neighborhood. Then, the actual house was located, and we had a way to get in the “back door”. Now we see the way to the front door. Before long, we are going to be inside with our feet propped up.
Q. Daily, you see patients without much hope, who have been promised cures for decades. They come in pretty discouraged about their ability to improve their diabetes and have little belief there can be a day when insulin will no longer be needed. What would you say to those folks?
A. I think the person who has the best chance of curing diabetes in the near future is Dr. Claresa Levetan. I have never known someone so driven by one goal as she is. She eats, breathes and sleeps thinking about curing diabetes. I feel fortunate to be her colleague and friend. Her aura and inspiration bring out the best in all who work with her. She has what it takes to make a dream become a reality.