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VOL. 6 • NO. 7

KIDNEY FAILURE:

A silent but deadly disease Lloyd Smith, 46, admits he did not take the news too well that he was suffering from kidney failure. In his mind, he was still an athlete, having played football in college and the Navy. He was also the man of the house to his wife and four children. As far as Smith was concerned, what the doctors said couldn’t possibly be true. “I knew I could beat it,” he said. “I was in denial.” In his case, there were warning signs. Doctors in the Navy had advised him that there was too much protein in his urine — a clear sign of kidney problems. But he still had 90 percent of his kidney function at the time. Though he managed to keep his kidneys functioning for 13 years, he still was not prepared to hear his doctor tell him “your kidneys are going to give out on you.” Kidney failure is one of the leading causes of death in African Americans in this country. In Massachusetts, the statistics are alarming. According to the Massachusetts Department of Public Health, in 2008 the death rate from kidney disease in blacks was more than double that in whites. Even more alarming is that kidney failure is in many cases largely preventable. Its leading causes are diabetes and high blood pressure — two illnesses prevalent among people of color. Neither disease has to result in kidney failure. Compliance with medication and lifestyle — healthy eating, exercise, blood pressure and weight control and not smoking — can often prevent kidney failure and may stop its progression. Smith was suffering from focal segmental glomerulosclerosis, more commonly known as FSGS, a condition that occurs five times more frequently in African Americans as compared to whites in the U.S. In FSGS parts of the filtering elements of the kidneys (glomeruli ) become scarred, which prohibits them from cleaning the blood appropriately. FSGS accounts for 30 percent of the cases of kidney failure annually. People might not give their kidneys a second thought — until they fail. Much like comedian Rodney Dangerfield, kidneys get no respect for their role in filtering blood to ensure certain nutrients, such as proteins and sugar, remain available to the body while removing metabolic waste as urine. But kidneys do much more. They keep a healthy balance of several minerals like potassium, which helps muscles, including the heart, function normally. They

Victor Benson (left) donated a kidney to Lloyd Smith, his uncle (right). They are pictured with Smith’s wife, Sandra, at the National Kidney Foundation’s Spring on the Park Gala held last year in Boston. (Photo courtesy of the National Kidney Foundation Serving New England)

make vitamin D, one of the hormones necessary for bone health. They stimulate the formation of red blood cells and they play a key role in regulating blood pressure. Like diabetes and high blood pressure, kidney failure is initially silent. Damage progresses slowly and quietly through five stages. Stage 5 is considered end-stage kidney failure. At that point, only two procedures — dialysis or transplantation— can keep a person alive. Kidney transplantation is the preferred treatment. It improves quality of life and increases survival. While dialysis can function as a surrogate kidney and mechanically cleanse the blood, it is not ideal. It is time-consuming — three-to four-hour treatment sessions

three times a week — and costly. And survival on dialysis is very limited. For example, only about 30 percent of diabetic patients are alive after five years of dialysis treatment. With a well-functioning transplant, survival is much improved in comparison. Kidney transplantation has made great strides in recent years. Contrary to the belief by some that it is experimental, the procedure was first performed at Brigham and Women’s Hospital in Boston in 1954. Not only is it the oldest type of transplantation it has one of the highest success rates. Data from the Organ Procurement and Transplantation Network (OPTN), which maintains the only national patient Smith, continued to page 4

REGULAR SCREENINGS KEY TO PREVENTION

Alex Drumm didn’t know that drinking large quantities of protein smoothies combined with chronic high blood pressure could result in kidney failure. Drumm, a chef at Four Seasons Boston, is on dialysis waiting for a kidney transplant. (Photo by Tony Irving)

Years before he started dialysis, Alex Drumm, 39, was pretty easy to find — inside the neighborhood gym. He was there six days a week walking on the treadmill and pumping iron — trying his best to get those 20-inch biceps. Nineteen and a half inches just wouldn’t do. “All my life I’ve been in shape,” said Drumm. Or so he thought. His days in junior Olympics have long since passed. Still he pushed his body, trying to maintain a competitive edge over his exercise buddies. “There was no limitation,” he explained, as he worked out sometimes up to three hours at a time. Drumm admitted that he did not have regular screenings. Back then he didn’t even have a doctor. Like many young men, he reasoned that he was in good health and did not require any medical attention. That also means that he was not keeping a sharp eye on his blood pressure or sugar levels — two strong indicators that the kidneys may be going awry. Dr. Winfred W. Williams is the director of the Program in Interventional Nephrology for the Transplantation Unit at Massachusetts General Hospital. Nephrology is the treatment of kidney diseases. Williams explained that it is possible to halt or slow down the progres-

sion of kidney failure, but most people are unaware of initial problems. “In the beginning, it is silent,” he said. Though a person can live with just one kidney, in chronic kidney failure, both kidneys are impacted uniformly. Williams emphasized that in patients with hypertension or diabetes or in the early stages of kidney injury, strict adherence to blood pressure control and certain medications called ACE (angiotensin-converting enzyme) inhibitors or ARBs (angiotensin receptor blockers), can be critical. “These medications are often kidney protective,” he said, “and a first line of attack.” Generally, when kidney function falls to 15 percent, dialysis or transplantation is indicated. Transplantation is the preferred treatment. “Lifespan is shortened on dialysis,” Williams lamented, “even for the very young.” Not everyone is a candidate for transplantation, according to Williams. Those with a debilitating illness, active cancers and certain chronic infections, such as bone infections, are not good candidates. People who are unable to comply with medical follow-up will not be referred to a transplant team. History of non-compliance, such as failure to show up for dialysis, is enough to deny recommendation. Drumm, continued to page 4

WHEN KIDNEYS FAIL Perched on either side of the spine below the rib cage, the kidneys clear the blood stream of the wastes and excess water that become urine. These ﬁst-sized organs help control blood pressure and make several hormones needed to keep the body healthy. Chronic kidney disease (CKD) stems from years of silent damage to small vessels and tubes that form the ﬁltering units inside the kidneys. Waste begins to build up, harming the kidneys further. It sparks other health problems, too, such as cardiovascular disease (heart attacks, heart failure, heart rhythm disturbances and strokes), bone disease and anemia. Untreated kidney disease often leads to kidney failure (also called end stage renal disease, or ESRD). Once that occurs, merely staying alive requires regular dialysis to clean the blood or a kidney transplant.

for kidney disease. If you have any of these health problems, these steps and others recommended by your doctor can help you manage the condition and boost the odds of avoiding kidney disease.

What causes kidney failure?

“Diabetes and high blood pressure are the top two causes of kidney disease, the ﬁrst step on the path to kidney failure,” said Dr. Jan Cook, medical director of Blue Cross Blue Shield of Massachusetts. “That’s worrisome, because these serious health problems disproportionately affect the African American community. Worse, African Americans have higher rates of kidney failure than any other group.” According to the National Kidney Foundation, African Americans are nearly twice as likely to have diabetes as white peers. High blood pressure, a problem for 44 percent of women and 39 percent of men in the black or African American community, results in more than one in three new kidney failure cases per year. Overall, kidney failure occurred nearly four times as often in African Americans as in whites in 2007, though health trends suggest this gap may be narrowing. Other possible causes of kidney failure include kidney problems that are inherited or present at birth, infections or autoimmune disorders that attack the kidneys, poisoning or injury.

What steps help keep your kidneys healthy?

First, ask your doctor how often you should be tested given risk factors and your overall health (see “Testing for kidney disease”). Remember, kidney disease can worsen silently for years. No signs or symptoms alert people to early kidney disease, the stage easiest to treat. Three other steps — eating well, cutting back on salt and exercising — help lessen the odds that you’ll develop diabetes, high blood pressure or heart disease, which raise the risk

avoid trans fats (also called partially hydrogenated oil). Avoid too many sweets. • Cut down on salt (sodium). African Americans, people over 51, and people who have diabetes, high blood pressure or kidney disease should limit sodium to 1,500 mg a day. Snubbing the salt shaker goes only so far. A new report from the Centers for Disease Control and Prevention notes 10 types of food that contain over 40 percent of the salt in our diets: bread and rolls; cold cuts and cured meats; pizza; fresh and processed poultry; soups; sandwiches (cheeseburgers included); pasta dishes; meatmixed dishes like meatloaf; and snacks like chips, pretzels and popcorn. • Check Nutrition Facts labels and keep a sharp eye on servings. Several slices of even low-sodium bread add up to trouble. Even foods that sound healthy — vegetable soup, turkey slices, cottage cheese or fresh chicken or pork — may have lots of sodium. Fast foods, take-out or restaurant meals can be a mineﬁeld. Fortunately, fresh fruits and vegetables are naturally low-sodium. • Get enough exercise. Federal health guidelines say all adults should spread throughout the week 150 minutes of moderate-intensity activities like walking or 75 minutes of vigorous activities like running or a mix. Aerobic activities (walking, biking, skipping rope, running or swimming) can be done in long or short bouts of at least 10 minutes each. Strengthening all major muscle groups is recommended twice weekly, too.

What if you already have kidney disease?

• Eat healthy. Check out the African Heritage Diet Pyramid from Oldways, which emphasizes traditional healthy favorites like collards and other leafy greens and minimizes meat and sweets (www.oldwayspt.org/AHH-pyramid). Generally, load up on colorful veggies and fruit; choose whole grains, such as oatmeal, brown rice, cornmeal and whole wheat; eat lean protein, such as beans, tofu, ﬁsh, poultry and lean cuts of meat; nibble nuts and seeds; and select no-fat or low-fat dairy products. Use small amounts of heart-healthy oils (olive, corn, canola, safﬂower), limit saturated fats (butter, palm oil) and

• Ask your health team what you should do about the steps above. You may need to see a kidney disease specialist called a nephrologist. • Take medicines as prescribed. • If you have high blood pressure, be sure it stays under 130/80 mmHg. That may require taking two or more kinds of medication, including a diuretic. Limit alcohol and caffeine. Try to keep weight in a healthy range. • If you have diabetes, set a healthy target for controlling blood sugar with your doctor. Aim for this as often as possible. If you have trouble, talk to your health care team about changes that could help. Try to keep cholesterol and weight in a healthy range and blood pressure under 130/80 mmHg. Limit alcohol. • Your doctor may recommend changes in diet, such as limiting protein and foods high in cholesterol. In addition fewer potassium-rich foods, such as bananas, oranges and dried beans, may be recommended because diseased kidneys have trouble removing potassium. Excess potassium can disturb heart rhythms.

TESTING FOR KIDNEY DISEASE Ask your doctor about being tested, especially if you have high blood pressure, diabetes, heart disease or a family history of kidney disease. Simple blood and urine tests can check how well your kidneys work. BLOOD TEST: Measures how much blood per minute your kidneys filter. This is called GFR, which stands for glomerular filtration rate. According to the National Kidney Disease Education Program (NKDEP), the numbers to watch are: • 60 or higher: Normal kidney function • Under 60: May mean kidney disease • 15 or under: May mean kidney failure URINE TEST: Checks the level of albumin and other proteins, which pass more easily through the filtering system when kidneys are damaged. Generally, experts recommend annual tests for people with type 1 diabetes starting five years after diagnosis and annual tests for people with type 2 diabetes. If you have other risks for kidney disease, talk to your doctor about the best schedule for you.

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Questions & Answers 1. Why does having diabetes increase the risk of kidney failure? Diabetes damages many organs, including the kidneys, in several ways. Elevated sugar, a hallmark of diabetes, directly binds and damages proteins and cells in the kidney; abnormal hormones affect the kidney’s function; and elevated inflammatory markers present in diabetes affect the kidney. Combined insults lead to renal failure.

Donate Life State donor registry Visit http://donatelife.net/register-now to enroll in your state’s donor registry to donate organs upon your death. Many states will allow you to designate which tissues or organs you choose to donate, and to withdraw your name if you change your mind. You can also list yourself as a donor on your driver’s license or state ID.

Ravi Thadhani, M.D., M.P.H. Director for Clinical Research in Nephrology Massachusetts General Hospital

Living donation If you are 18 and older — even senior citizens — in good general health you can donate a kidney as long as you are compatible with the recipient. Some illnesses, such as diabetes, recent cancers, hepatitis and certain infections will prohibit donation.

2. Are people aware that their kidneys are beginning to fail? Patients are usually asymptomatic early in the course of kidney failure. Subsequently, function slowly declines throughout the years. However, a simple urine test to detect protein in the urine and a blood test to detect an elevated level of serum creatinine (a measure of kidney function) in the doctor’s office can help diagnose patients early. 3. Is chronic kidney failure reversible? Unfortunately, most of the damage to the kidney caused by diabetes, high blood pressure and other conditions is irreversible. However, aggressive glucose control and specific medications can delay progression. 4. Why is a live donor preferable for transplantation? Patients that receive kidneys from live donors live longer and the life of the transplanted kidney is also extended. Usually there is less tissue injury due to poor blood or oxygen flow to the kidney from a live donor and the kidneys are usually healthier. Kidney transplantation is a good thing, and if one had a choice, having a live donor is best.

Paired donation Often people cannot donate to their loved ones because they are incompatible. Their blood type and immunity differ. In paired donation, an incompatible donor and recipient are matched with another incompatible donor and recipient and the kidneys are exchanged between the pairs. This allows both donors to donate and both recipients to receive a compatible kidney. In simple terms, the pairs “swap” kidneys.

5. Why do African Americans have a higher incidence of kidney failure? It is not fully understood, but African Americans have a higher incidence of high blood pressure and diabetes, among other risk factors. They also respond differently to the medications we have to treat blood pressure and kidney disease. Recent data suggest there may also be a genetic predisposition, and as studies emerge, we hope to use these recent findings to predict more accurately who will develop kidney failure so we can intervene earlier. 6. Does control of blood pressure by lifestyle changes and/or medication reduce the risk of kidney failure? Absolutely. Adequate blood pressure and diabetic control is key in reducing the risk of kidney failure, and is largely under the control of the patient. Compliance with medications, following medical advice and healthy living are all factors. 7. Does kidney disease run in families? The majority of kidney disease in the U.S. is due to high blood pressure and diabetes both of which have some genetic component, but lifestyle factors such as salt intake, obesity and exercise are the major and modifiable risk factors. A small subset of patients has diseases with a strong genetic component, such as polycystic kidney disease. Recent findings in African Americans suggest a genetic predisposition among this group of patients. Routine genetic screening, however, is not recommended but may soon be on the horizon. 8. Is kidney transplantation a cure? Kidney transplantation is a form of renal replacement therapy and not a cure to renal failure because the lifespan of the transplanted kidney is limited. Approximately half of the transplanted kidneys are still working after 10 years. Importantly, other complications arise as a result of a kidney transplant, namely risk for infection, but overall survival after a kidney transplant exceeds that of remaining on dialysis. 9. What happens if a kidney donor later requires a kidney transplant? Donating a kidney is a very rewarding process that requires a thorough evaluation before the surgery to ensure the donor’s kidneys are healthy. Kidney donation will not interfere in getting a kidney transplant should the donor require a transplant later in life. Also, according to the New England Donor Bank, preferential consideration in placement on the transplant list is granted to donors. 10. How long can a person survive on dialysis? Dialysis can be continued until the patient dies of other diseases or until he or she decides to stop treatment. However, the mortality of patients in dialysis is higher compared to patients of similar characteristics not on dialysis. Dr. Hector Tamez contributed to these responses.

The information presented in BE HEALTHY is for educational purposes only, and is not intended to take the place of consultation with your private physician. We recommend that you take advantage of screenings appropriate to your age, sex, and risk factors and make timely visits to your primary care physician.

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A question he said they continued to ask was “are you sure?” Those were the last words he heard just waiting list, indicate that more than 90 percent before he was rolled in for the surgery. of transplanted kidneys survive the first year. Unfortunately, Benson’s willingness to Even after five years more than 80 percent of donate his kidney is the exception rather than kidneys donated from living donors still functhe rule. Research by Dr. Clive Callender of tion well. Howard University College of Medicine disTransplantation is the preferred solution, covered that blacks cited five major reasons for but it is not an easy one for African Americans. reluctance to become donors: lack of transplant While blacks constitute 12 percent of the U.S. awareness; religious myths and misperceppopulation, they make up 33 percent of the more than 88,000 people nationwide waiting for tions; distrust of the medical community; fear of premature death; and racism. The biggest a kidney transplant. concern was that doctors would allow blacks Most transplanted kidneys come from to die in order to procure their organs. people who have died. However, the number In response, Callender developed the of people waiting for kidneys has increased National Minority Organ Tissue Transplant steadily, while the number of kidneys availEducation Program (MOTTEP), the purpose able from deceased donors has remained of which is not only to increase awareness of constant. The result is a severe shortage of the need for tissue and organ donation among kidneys and a longer waiting time for people minorities but to inspire minorities to adopt with kidney failure. healthier lifestyles and behaviors to decrease A shortage of organs donated by minorities the need for can contribsuch donation. ute to longer A DISTURBING DISPARITY MOTTEP’s waiting periods 60 54.5 motto is “Love for transplants In Massachusetts the death rate Yourself, for minorities. 50 from kidney disease in blacks is more than twice that in whites. Take Care of Within a year 40 Yourself.” Since of placement on 32.9 the organization a waiting list, 30 23.6 was developed typically only 10 20 minority donapercent of blacks 13.5 tions percentare transplanted 10 ages have as compared to doubled. 18 to 20 percent 0 White female White male Black female Black male Since his of whites. RACE AND GENDER Figures are age-adjusted to the 2000 U.S. standard population, per 100,000. procedure, In Smith’s Source: Massachusetts Department of Public Health, August 2010 Smith is still case, the followed closely decision was by his doctors. He started out with 46 pills a made to transplant before he got to end-stage kidney failure. His luck held out even further. day in part to prevent his immune system from attacking the donated organ. He’s now whittled Though several of his relatives and loved ones lined up to be tested as potential donors, that down to 11 pills daily. Smith considers himself lucky. “I’m there one by one each was turned down. It came for milestones I would have missed,” he said. down to one last nephew. Victor Benson, His oldest son is engaged; another son is 33, stepped right up. He would probably do it getting ready for college. The news isn’t all good again if he could. though. His donated kidney is showing traces “He’s more like a brother to me,” he of FSGS — the disease has a high likelihood of explained. “He used to pick me up from prerecurrence — so he is taking it one day at a time. school. He helped me with my times table and Benson, too, requires regular follow-up worked with me in sports.” Benson said that visits. Serum creatinine, a breakdown product once he made the decision to donate it never from muscle metabolism, which is used to occurred to him to change his mind. measure kidney function, increases in people Benson underwent a series of tests. The with one kidney. Doctors keep a sharp eye on it doctors checked his heart; they looked for to make sure it does not exceed a certain level. signs of diabetes, cancer, kidney defects and “Recovery to me was like an injury in football,” certain infectious diseases. Even a psychiatrist he explained. “My life is totally the same.” weighed in to make sure he was emotionally Benson has not stopped giving. On his ready to make such a sacrifice. driver’s license, he’s listed as an organ and tis“The transplant team is there for you,” he sue donor. explained. “There is no pressure to donate.”

BE YOUR OWN ADVOCATE If you have diabetes or high blood pressure, check your kidney function every year. If your doctor does not offer testing, ask for it.

KIDNEY DISEASE BY THE NUMBERS Test Blood Pressure Total Cholesterol Blood Glucose (non-fasting) Body Mass Index Serum Creatinine1 Albumin to Creatinine Ratio2 Glomerular Filtration Rate3

Desired* Less than 120/80 mmHg Less than 200 mg/dL Less than 140 mg/dL 18.5-24.9 0.8-1.4 mg/dL Less than 30 mg/gm 60 ml/min/1.7 m2 or higher *May be different for people with diabetes.

1. Measures creatinine (waste) in the blood 2. Estimates the amount of protein in the urine in a day 3. Estimates kidney function

CELEBRATE WORLD KIDNEY DAY

Age-adjusted Death Rates, 2008

Smith, continued from page 1

MYTHS BUSTER Some people are afraid to register as donors because of misperceptions and myths. MYTH: The doctors will not work as hard to save my life. FACT: The first priority of a doctor is to save your life — not someone else’s. The doctor in charge of your care has nothing to do with transplantation. Organ and tissue donation isn’t even considered or discussed until after death is declared.

MYTH: I’m too old to donate. No one could use my organs. FACT: There is no age limit on donation. The quality of the organ — not age — is the deciding factor.

MYTH: My family would prefer an open casket funeral. FACT: There are no visible signs of organ or tissue donation. The donor’s body is clothed for burial.

MYTH: My family will be charged if I donate my organs. FACT: Costs for organ removal go to the transplant recipient.

MARCH IS NATIONAL KIDNEY MONTH 4 BE Healthy • http://behealthy.baystatebanner.com

Get screened for chronic kidney failure Date: March 8, 2012 Location: Cathedral Housing Community Room 1472 Washington Street Time: 3-7 p.m. Contact: Kendall Maggi at 800-542-0001 Sponsored by the National Kidney Foundation Serving New England

Drumm, continued from page 1

Drumm is on dialysis three times Like many people, Drumm was a week for four hours at a time. He was unaware that he was headed for kidney evaluated for a kidney transplant and has failure. According to health experts, been added to the list of those in wait. high-protein diets may accelerate the loss He admits this change has been hard of kidney function in people with early to take. “I have never been sick before,” he problems. Such was probably the case explained. “I never missed a day of work.” with Drumm. Drumm continues to work as a chef To help him bulk up, he consumed large at Four Seasons Hotel Boston. He imparts amounts of protein drinks — more than the words of wisdom to other young men. average 50 grams a day, as recommended by “Have your blood drawn and pee in a cup,” the Centers for Disease Control and Prevenhe recommended. “That’s all the doctors tion. Those drinks promised lean muscle need to find out what’s going on in your growth and sustained kidneys.” energy while promoting Indeed, African recovery from exercise. Americans and other But they never said ethnic minorities must anything about kidney be their own advocates, failure. The whirring of said Williams. Those with his blender as he churned diabetes or high blood up power smoothies was pressure should keep a a familiar sound. “I was sharp eye on their kidney addicted,” he said. function as well as blood About five years ago, pressure, glucose and Drumm’s creatinine level, cholesterol levels. Any which measures how indication of abnormal well your kidneys are kidney function, such Winfred W. Williams, M.D. working, was four times as an abnormal amount Director of the Program in the amount it should of protein in the urine, have been, according to Interventional Nephrology should prompt considerTransplantation Unit Drumm. But when he ation of an early referbounced back and was al- Massachusetts General Hospital ral to a nephrologist, a lowed to resume dampedkidney specialist. This is down workouts, he put his health aside, and especially true if there is a family history of failed to keep appointments with a kidney kidney failure. team. His recovery was short-lived. If subsequent tests indicate a worsenA couple of years ago, Drumm ing condition despite adherence to mediblamed his fatigue, loss of appetite and cations and lifestyle changes, request sleep problems on his hectic schedule. an evaluation by a kidney transplant “I was so tired I had to pull myself out program. It’s almost never too soon to of bed,” he said. He finally went to his be considered for transplant evaluation, doctor, but he was not prepared for what according to Williams. If your doctor the doctor told him. “You have kidney does not come through, “refer yourself,” failure,” he said. He didn’t hear much he said. (Call 800-936-1627 for a list of more after that. transplant centers).

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