|Voice of the Diabetic
VOLUME 22 NUMBER 4 FALL 2007
DIRECTOR OF PUBLISHING
Eileen Rivera Ley
DIRECTOR, SPECIAL PROJECTS
Ann S. Williams
Tom Rivera Ley
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Voice of the Diabetic is published quarterly by the Diabetes Action Network (DAN) of the National Federation of the Blind (NFB). It is read by over 320,000 diabetics and their care-givers who know that with the right information and support, no diabetic has to feel helpless or hopeless, regardless of medical complications. Voice of the Diabetic is available in print, audio, and e-mail versions and is the only magazine that focuses specifically on making life with diabetic complications a lot less complicated. Voice of the Diabetic: Educate, Empower, Inspire.
Note: The information and advice contained in Voice of the Diabetic are for educational purposes and are not intended to take the place of personal instruction provided by your physician or by your health care team. Discuss any changes in your treatment with the appropriate health professionals.
Copyright 2007 Diabetes Action Network, National Federation of the Blind. ISSN 1041-8490
VoiceCover: Tom Ley and his children have more time together since his brother gave him a kidney. Photo by Allen Polansky.
Of Kidneys, Family, and Quality Time
by Elizabeth Lunt
Continuous Glucose Monitoring:
A Movie is Worth a Thousand Pictures
A Review of the Medtronic Guardian REAL-time System
by Thomas Ley
by Gary Scheiner
Can Improve Your Control
by Lynn Bailiff
Healthy Home Cooking
IF BLINDNESS COMES
The DAN in Action at Convention
by Alan Wheeler
Imagine Independence—The Possibilities Fair
NFB State Conventions for the Remainder of 2007
Determination is the Key
by Dr. Marc Jay Gannon
Be Prepared: Planning for Sick Days
by Ann S. Williams
Understanding Oral Diabetes Medications
by Gail Brashers-Krug
Voice of the Diabetic Subscription Form
Ask the Doctor
Of Kidneys, Family, and Quality Time
by Elizabeth Lunt
[Photo/Description: Tom and his brother, Scott, sit together after their surgery.]
Thomas Rivera Ley smiles broadly at the memory. “The first words I heard were: ‘Mr. Ley, your surgery is over and you are making lots of urine!’” he recalls gleefully. Nurses kept coming in to empty bags of urine, he explains, and he could not believe how often. When he was in kidney failure, his body didn’t create any, which was “convenient on long trips,” he laughs. Now, after four years of being near-tethered to a dialysis machine, he’s thrilled about the urine. It proves that his new kidney, a gift from his brother Scott, is working just fine.
Tom, who celebrated his 40th birthday in November 2006, has had diabetes since he was seven years old. He went blind when he was 17. His kidneys began to fail when he was 20, and he had his first transplant at 22. That kidney lasted nearly 14 years, then failed in 2003 because of the toxicity of the very medicine intended to keep him from rejecting the organ.
At that point, Tom sought a kidney-pancreas transplant to cure both the kidney failure and his diabetes. This involved waiting for organs from a deceased donor, and then urgent calls at all hours of the day and night. It was a long, stressful process, and none of the prospective matches actually matched. “I would prepare emotionally to have major surgery, and they would call six or eight hours later and say the cross match did not work,” Tom says. Tom decided to try for a kidney from a live donor and to worry about the pancreas later.
Tom and his wife wrote to his five siblings to see if they would consider giving him a kidney. “Asking someone to remove an organ and have major surgery [is] difficult,” he says. “We put our hearts and souls into that letter.” They explained how hard and limiting life was for Tom on mandatory dialysis: He didn’t see his family three days a week because he went directly from work to four hours of dialysis and got home very late. All five of his siblings volunteered for donor testing.
Unfortunately, willingness isn’t enough. Numerous criteria come into play when making a donor match. If blood types are compatible, the cross match is next. Blood from both people is mixed. If the prospective kidney recipient’s blood reacts badly to the donor’s blood, it’s bad news, though it’s called a positive match. A negative cross match, however, means there is no bad reaction to the donor’s blood. Finding a match for Tom was no easy task because of the complexities of his immune system. He was exposed to foreign tissue during his first round of dialysis many years ago and has a high level of antibodies in his blood stream.
Tom’s 45-year-old brother Scott wanted to help from the start. He respected Tom’s decision to try for the kidney-pancreas transplant, but when Tom turned to his family, Scott was ready. He knew that as a civilian engineer for the Air Force, and therefore a federal employee, he would get generous, paid recovery leave that would make his surgery possible. But more than anything else, he loved his brother. “I’m doing it so he can see his son grow up,” Scott declares. “He’s a great father, a great person. He would do it for me.”
Tom and Scott both have type O blood, and of the willing siblings, Scott was the best donor candidate because he also had a high number of matches on the genetic markers called antigens. The donor coordinator advanced him to the other eligibility tests. Although the transplant would be performed in Maryland, Scott’s initial testing was done in Ohio, where he lives with his wife Maureen and their two teenage children. Scott says the doctors checked him out “top to bottom.” He had a thorough physical, stress tests, X-rays, an electrocardiogram and CAT scans. They want to ensure, Scott explains, that as a donor “you have no condition that may require your kidneys to work harder in the future.” High blood pressure, diabetes, heart disease and many other conditions disallow live kidney donation, but Scott was given a clean bill of health and selected as Tom’s donor.
Sometimes when a live donor is identified, a kidney transplant can go ahead in as little time as a month. Unfortunately for Tom and Scott, they faced many delays. Over the summer of 2006, Tom’s doctors found a mass in and around his failed kidney. They postponed the surgery and Tom had weeks of testing before his doctors ruled out cancer. “It was an emotional roller coaster,” says Scott, who was waiting in Ohio.
Two months later, just days before the surgery, a routine final cross match unexpectedly came up positive. The doctors had to find a way to neutralize the antibodies that Tom’s body was creating against Scott’s tissue. They decided on a new plasma replacement therapy, but nobody was sure if the scheduled surgery would go ahead. “It was nerve-wracking,” Tom recalls, because by then Scott and his family were in Baltimore, ready to go. Days of treatment followed, the new protocol worked to reduce Tom’s antibody level, and at midnight on
a Thursday, Scott and Tom learned that their surgery would proceed the next morning.
On October 27, 2006, at University of Maryland Hospital, Drs. Bartlett and Cooper finally worked their surgical magic. It had been a long six months since Scott was cleared as a donor. Things went so smoothly that Scott was out of bed and walking that same night. In fact, he even managed to make his way down the hall to Tom’s room to greet him after recovery. A few weeks afterward, they both felt well.
Scott, now home in Ohio, reports that the waiting and testing were “arduous at times,” and it took a while for the soreness in his abdomen to subside after surgery. But he doesn’t anticipate any change in his physical abilities. He says those thinking about donating an organ should not hesitate to “pick up the phone.” The donor coordinators and doctors will not allow surgery unless they are sure a person can spare the kidney and remain healthy. “It’s not a hero story,” he says. “It’s just great to have given this gift to my brother.”
Tom thinks it’s great, too. “A big burden has been lifted,” he says gratefully, and “I [am] joyful and thankful to Scott, his wife Maureen, and their children who sacrificed throughout the process to make this happen for me.” He’s savoring
the foods he was forbidden during dialysis and finds it easier to keep a close eye on his diabetes. In short, Tom is enjoying his new life: home in time for dinner and no detour to the dialysis clinic. i
For more information about organ donation, see www.organdonor.gov or the National Kidney Foundation site at www.kidney.org.
About the Author
Elizabeth Lunt, MS, has worked in publishing and libraries for many years. She is the editor of Voice of the Diabetic and would like to hear your comments about this article or any other in the magazine. Please send Letters to the Editor to: Elizabeth Lunt, Editor, Voice of the Diabetic 1800 Johnson Street, Baltimore, MD 21230 or firstname.lastname@example.org.
Continuous Glucose Monitoring:
A Movie is Worth a Thousand Pictures
A Review of the Medtronic Guardian REAL-time system
by Thomas Ley
[Photo/Description: The Medtronic Guardian® REAL-Time CGMS]
The expression “information is power” is especially true for diabetics seeking tight blood glucose control using either multiple daily injections of insulin (MDI) or insulin pumps. Using these therapies, you can decide how much short-acting insulin to take four, six, eight, or even more times per day, based upon the corresponding four or six or eight blood glucose readings you take using finger sticks.
Imagine how much blood glucose readings might improve if your blood glucose was automatically measured and displayed every five minutes, 24 hours a day, seven days a week. Well, you don’t need to imagine it, it is here, and is known as a continuous glucose monitoring system, or CGMS.
Medtronic is one of a small handful of companies offering a continuous glucose monitoring system, and they recently released their latest product, the Medtronic Guardian® REAL-Time CGMS. With the Guardian REAL-Time, you can follow the trend of your blood glucose up and down throughout the day and night in response to different foods, exercise, and insulin doses. Knowing what direction blood glucose is trending can be at least as important, if not more important, than knowing your current blood glucose reading. As Gary Fox of Med-tronic says “the biggest advantage is the education you get from the Guardian REAL-Time regarding how different foods, stress and other activities impact your blood sugar.”
The data obtained from CGMS can be compared to watching a movie of blood glucose readings throughout the day, whereas the data from finger sticks taken four or six times a day is like viewing individual snapshots. A single snapshot may be misleading if what occurred prior to the picture is not known. For instance, if you are getting ready for bed and discover that your blood glucose is 88, you might often choose to eat a small snack. However, what if you knew from your CGMS that an hour ago your blood glucose was 72 and a half an hour ago it was 79? Knowing this, your current reading of 88 is not worrisome at all.
How does the Guardian REAL-Time work?
Three small but separate pieces make up the Guardian REAL-Time CGMS. The first piece is the blood glucose sensor which is inserted under your skin just like an insulin pump delivery site. It measures the level of glucose in your interstitial fluid every ten seconds and produces an average of these readings every five minutes. The sensor is disposable; it remains under your skin for up to three days and must be replaced. The portion that is visible above your skin is about the size of a dime. Each sensor costs $35.
The second piece in the system is the new MiniLink™ transmitter. This piece connects to the sensor and is about the size of a quarter. When connected to the sensor, the two pieces become a single unit which is waterproof. The MiniLink™ transmits the blood glucose readings to the Guardian REAL-Time monitor wirelessly; no cords or wires to have to connect, disconnect or get tangled. The transmitter is rechargeable (in only 20 minutes) and will last for one year before it must be replaced.
The final piece in the system is the Guardian® REAL-Time monitor. This device is exactly the same size and shape as the Medtronic series of Paradigm® insulin pumps. It continuously displays your current blood glucose reading received from the MiniLink™ transmitter along with a trend arrow to show whether your blood glucose is rising or falling. The monitor has three different types of configurable alarms, which go off at a pre-set level for either a high or low blood glucose reading (the alarm sounds different for a low as opposed to a high). You can set the alarm to warn you when your blood glucose is changing rapidly in either direction. Finally, the monitor can alert you up to thirty minutes prior to when it predicts that, based upon the trend and the rate of change, your blood glucose will reach the pre-set high or low level.
You should not base insulin dosing exclusively on the blood glucose reading provided by a CGMS. CGM systems do not eliminate finger sticks; you must still take one twice a day and enter the value into the Guardian® REAL-Time monitor for calibration. You can also enter into the monitor data such as the time of and carbs in each meal or snack, the type and amount of exercise you do and the type and amount of each insulin dose, which may help your doctor make better treatment decisions. You can download all this data to a PC and upload to the Medtronic Web-based CareLink™ personal software. Here, you or your doctor can view graphs of trends that will highlight areas for improved diabetes care.
The Guardian REAL-Time system is not accessible for people who cannot rely upon sight to read and enter data into the monitor. Unfortunately, practically no insurance coverage is available for CGM systems yet. The Guardian REAL-Time starter kit costs around $1,300 and includes four sensors, the Mini-Link™ transmitter and the Guardian® REAL-Time monitor. The CareLink™ software is included.
Look for an article in an upcoming edition of Voice of the Diabetic which outlines all CGM systems currently on the market or undergoing the FDA approval process. You may visit www.Minimed.com for more information on the Guardian® REAL-Time CGMS or you may call 1-800-MINIMED (646-4633). Alternatively, you may write to: Medtronic Diabetes c/o Customer Support
18000 Devonshire Street, Northridge, CA 91325-1219
About the Author
Tom Ley has had Type 1 diabetes since he was seven and has been blind since he was 17. He is a manager and senior software support analyst for UPS and has a strong background in the field of accessible technology for the blind. He is the technology writer for the Voice of the Diabetic.
by Gary Scheiner
When it comes to managing diabetes, basal insulin gets very little respect. Most people can’t spell it correctly (basil? basul?), and even fewer know what it’s even used for. And that’s a shame, because basal insulin represents the FOUNDATION upon which insulin therapy is built.
Basal insulin’s job is to offset the liver’s secretion of glucose into the bloodstream. Everyone’s liver does it, mainly to supply the brain and nervous system with a steady supply of energy, and mainly in response to the many hormones that are in circulation.
Because the liver is secreting sugar into the bloodstream continuously, a lack of insulin would result in a sharp rise in blood sugar levels. It would also cause many of the body’s cells to starve for fuel and can cause the production of acidic “ketones” as cells turn to alternate fuel sources. And too much insulin would overwhelm the available supply of glucose in the blood and result in a blood sugar drop.
Suffice it to say that basal insulin is necessary for survival, and the right amount is critical to achieving stable blood glucose control.
Meeting Basal Needs
Each person’s basal insulin requirement is unique, affected by factors such
as body size, activity level, stage of growth, hormone levels, and the amount (if any) of internal insulin production from one’s own pancreas.
During a person’s growth years (prior to age 21), basal insulin requirements tend to be heightened throughout the night. This is due to the production of large amounts of hormones (growth hormone and cortisol) that stimulate the liver to release extra glucose into the bloodstream. After the growth years, production of these hormones is reduced and limited primarily to the predawn hours. The “dawn effect”, as this is called, results in an increased secretion of glucose by the liver in the early morning. Thus, basal insulin requirements in most adults tend to peak during the early morning hours.
Using intermediate insulin (NPH) at night to meet basal needs can often result in hypoglycemia during the night (as the insulin “peaks” 4-8 hours after injection), and a blood glucose rise in the evening as the NPH wears off. Long-acting/basal insulins (Lantus and Levemir) are relatively flat and peakless, meaning that there may not be enough basal insulin during the night and early morning, and there may be too much in the afternoon and evening.
Pump therapy is unique because it offers a great degree of maneuverability in terms of matching basal insulin to the body’s needs. Basal insulin is made up of small pulses of rapid-acting insulin every few minutes. The rate of delivery (the “basal rate”) can be adjusted hourly, if needed, to match the liver’s normal 24-hour pattern of glucose secretion.
Pumps also permit temporary changes to basal insulin at a moment’s notice. This can come in handy during periods of extended physical activity or very low activity (such as during travel). It can also be used to improve control during illness, menstrual cycle changes, stressful situations, alcohol consumption (which can produce a prolonged drop in blood sugar levels), and following very high-fat meals.
Setting Basal Doses
In most cases, the daily (24-hour) dose of basal insulin nearly equals or is slightly less than the daily mealtime insulin. This depends on a person’s body weight and sensitivity to insulin, which is affected greatly by physical activity. The bigger you are, the more basal insulin you will need. The more active you are, the less you will need. During a person’s growth/teen years, basal insulin needs can be particularly high. In advanced age, basal insulin needs can be quite low.
When evaluating basal insulin levels, keep this important fact in mind: in the absence of food, exercise and mealtime/bolus insulin, basal insulin should hold the blood sugar fairly steady.
It is a good idea to fine-tune your pump’s basal insulin settings before settling on specific bolus doses or insulin-to-carb ratios to use at mealtimes. When high or low blood sugars appear, it is difficult to know what to adjust unless the proper basal insulin levels have already been established.
To test the your basal insulin settings, you will need to wait approximately 4 hours after your last bolus and meal/snack. This will give the carbs time to finish digesting and the bolus time to finish working. The meal (or snack) eaten before the test should be fairly low in fat (no restaurant food or take-out) in order to avoid a delayed blood sugar rise. You must stay connected to the pump continuously during the test, and go about your normal daily activities. However, heavy exercise should be avoided during the fasting phase of the test. Testing should not be performed during an illness or the onset of menses, following hypoglycemia, or if the blood sugar is greater than 250 at the beginning of the test.
To start the test:
• Check your blood sugar about four hours after the last bolus
• If the blood sugar is above 250, bolus for the high blood sugar and cancel the test
• If below 80, eat to bring your blood sugar up and cancel the test
• If the blood sugar is not too high or too low, proceed with the test
• Check your blood sugar every hour or two until you next usual mealtime
If your blood sugar drops by more than 30 mg/dl during the test period, the basal rate is probably too high. If it rises by more than 30 mg/dl, the rate may be too low. The basal rate should be changed in increments of .05 to .2 units/hr depending on your usual settings and the magnitude of the rise or drop that took place. The next day, re-test to see whether the adjustment produces a steadier blood glucose level. Continue to adjust and re-test until steady blood glucose levels are obtained.
Note that basal rates are usually changed one hour prior to an observed rise or fall in the blood sugar, since the rapid-acting insulin infused by the pump takes about an hour to peak. For example, if your blood sugar rises between 3 a.m. and 7 a.m., you would increase the basal rate between 2 a.m. and 6 a.m.
A Little Perspective…
Having the right basal insulin program and setting the right doses is important for anyone who uses insulin. Receiving too much basal insulin, or receiving it at the wrong times, can result in frequent (and perhaps severe) hypoglycemia, not to mention weight gain. Receiving too little basal insulin will produce high blood sugars and make it very difficult to set appropriate mealtime bolus doses. Insulin pumps allow the greatest degree of precision in setting basal insulin levels, and that can produce the best control and lifestyle flexibility.
Fine-tuning basal insulin can be complex. Don’t hesitate to reach out
to a member of your health care team who specializes in this sort of thing.
About the Author
Gary Scheiner MS, CDE is a diabetes educator with a private practice (Integrated Diabetes Services) near Philadelphia, and author of Think Like A Pancreas: A Practical Guide to Managing Diabetes With Insulin. He has had Type-1 diabetes for 20 years, and offers diabetes education and management consultations via phone, fax, and Internet to patients throughout the world. Submit inquiries to email@example.com, or call (877) SELF-MGT.
Can Improve Your Control
by Lynn Bailiff
What are carbohydrates?
Carbohydrates include starch, sugars and fiber. Many years ago, people with diabetes were told to stay away from sugar, but little attention was paid to the other carbohydrates consumed. We now know that watching the total carbohydrate content of food, not just the sugar content, is more important for achieving blood sugar control.
What foods contain carbs?
Sometimes it is easier to start by identifying foods that do not contain carbohydrates. Protein foods such as meat, fish, eggs and cheese as well as fats such as butter, margarine, oil, olives and avocados contain minimal or no carbohydrate. Remember that adding breading or a sweet sauce like barbeque or teriyaki to meats or seafood will add carbohydrates to these foods. Bread, cereal, rice, pasta, crackers and other grain products contain carbs. Starchy vegetables like potatoes, corn, peas, and dried beans also contain carbs. And
don’t forget about milk products and fruit. They contain carbs, too. There is a diabetes myth that skipping a slice of cake and having fruit instead is better for your blood sugar. It may be, but it depends on the portion size of your dessert. A small piece of cake will have less carbohydrate than a huge apple. Read on for more details.