Lupus Patient Doesn't Take Kidney Disease With a Grain of Salt
Jessica Goldman grew up with aches and pains and headaches and chronic, draining fatigue. In 2004, at age 21, she became very sick and was admitted to Stanford Hospital & Clinics. "My lymph nodes were all swollen, and at first they thought I had lymphoma," she said. "Then they told me I had lupus."
In fact, Goldman had what she calls a scary type of lupus—systemic lupus erythematosus. A chronic inflammatory disease, SLE was attacking her kidneys and brain, and also causing grand mal seizures.
Goldman was in and out of SHC for four months. She’d reach a stable point and be sent home, only to have another seizure or dangerously high blood pressure and be readmitted. She was on dialysis for about a year, after which a team of specialists told her that her kidneys were no longer functioning. "They said, 'they are gone, they are dead, and we have to move on to transplantation and long-term dialysis.'"
But then her kidney function began to improve. Transplant surgery, in which she would have received a kidney from her father, was no longer necessary.
Today Goldman is determined to do all she can to protect her health. Because of her lupus, she is constantly fatigued and her immune system is weakened, and she recently stopped working full-time in an office to spend more time taking better care of herself. Goldman takes some 20 pills each day—including the anti-malarial drug Plaquenil, the diuretic Lasix and steroids. And she also swears by a no-sodium diet.
According to the American Dietetic Association's Nutrition Care Manual for people with chronic kidney disease, too much sodium may cause high blood pressure, increase thirst and make the body retain too much fluid. Extra fluid is normally removed by the kidneys, but if they are not working properly, the body may retain fluids, causing ankles and feet to swell and causing shortness of breath because of fluid build-up in the lungs.
A recent study by researchers at the Stanford University School of Medicine and the Veterans Affairs Palo Alto Health Care System found that a voluntary effort by the U.S. food service industry to reduce salt in processed foods could lead to a 9.5 percent decline in Americans’ salt intake. That, in turn, could lead to a very modest decline in blood pressure among consumers.
"Limiting sodium is important in kidney disease of any cause," said Eliza Chakravarty, MD, assistant professor of immunology and rheumatology at Stanford University School of Medicine and an expert on SLE. A low-sodium diet, she added, can help to maintain both kidney function and blood pressure.
A year ago, Goldman launched a blog to share low- and no-sodium recipes she has tested, as well as cooking and restaurant-ordering tips. Today more than 5,000 visitors per month check out her offerings, from crunchy risotto cakes to coconut black rice and dream bars.
Goldman said the blog is her way of saying thanks for "the gift" of being a survivor. "When I was still on dialysis, the doctors told me that because I had kidney disease, I had to lower my sodium intake to keep my blood pressure stable and to control edema," she said. "But no one told me how to do that. Where would I find low-sodium foods? What were the tricks to giving food flavor? How could I make it work?"
How? By trial and error. Goldman learned to give up her daily tuna sandwiches: "Between the bread, mayo and tuna fish, I was getting tons of salt." By forgoing one teaspoon of salt, she learned, she could give up 2300 mg of sodium. So she also gave up the crab she had thought was healthy, and started cooking more pork, which has a minimal amount of sodium. "And I began to realize that my blood pressure was stabilizing, and that I could actually lower my medications."
At the same time, Goldman understands that salt sensitivity varies widely. "My body happens to respond strongly to limiting salt intake," she said. "But some people may not respond, and everyone has to find what’s right for them."
Goldman continues to receive treatment from a nephrologist, rheumatologist and general practitioner; she also sees an endocrinologist and has frequent acupuncture. "You think you’ve survived," she said. "But the reality of lupus is that your body is constantly coming up with weird things to challenge you."
By Diane Rogers.
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