Control That Chronic Condition

NKF-logo_Hori_OBThe National Kidney Foundation referred this reporter to me to discuss how I handle my chronic kidney disease.  Once she’d interviewed me, she decided to save the material and quotes I’d given her to use in an article on patient participation in their illnesses.

I have one thing to say to you, Laura Landro:  thank you.  Thank you from the bottom of my heart for making it clear that we CAN slow down the decline of our kidneys.  Thank you from the bottom of my heart for getting that message to so many people in one fell swoop.  And thank you from the bottom of my heart for making certain people know about SlowItDown.

While I added the images for the blog, this is the article as it appeared in the Wall Street Journal last Monday:  wsj

Patients Can Do More to Control Chronic Conditions

In the absence of cures, people can learn how to slow kidney disease, diabetes and other ills

By Laura Landro

By the time Gail Rae-Garwood was diagnosed with chronic kidney disease at age 60, it was already too late for prevention, and there is no cure. But Ms. Rae-Garwood decided she could do something else to preserve her quality of life: slow the progression of the disease.

For the millions of Americans over 50 who have already been diagnosed with chronic ailments like kidney disease, diabetes, heart disease, rheumatoid arthritis and chronic obstructive pulmonary disease, careful management can’t turn back the clock, but it can buy time. It takes adherence to medications, sticking to recommended diet and exercise plans, and getting regular checkups.

As simple as that sounds, experts say, patients often don’t hold up their end of the bargain, and doctors don’t always have the time to help between visits. Chronic ailments may also lead to depression, which itself is associated with poor adherence to medication across a range of chronic illness, according to a 2011 study in the Journal of General Internal Medicine.

“The whole goal in conditions that are lifelong, and aren’t going to go away, is to stabilize them and keep them as stable as possible for as long as possible,” says Edward Wagner, a researcher and founding director at Seattle-based Group Health Research Institute.

Patients’ Role

Dr. Wagner developed a protocol known as the chronic-care model in the 1990s, which has been increasingly adopted by many health-care providers. One of its primary goals, in addition to careful monitoring, is teaching patients self-management skills. “Evidence is mounting that the more engaged and activated patients are in their own care, the better the outcomes,” Dr. Wagner says.

Take kidney disease. One of the fastest-growing chronic conditions world-wide, it affects 26 million Americans, and millions of others are at increased risk, according to the National Kidney Foundation. Over time, the kidneys lose their ability to filter waste and excess fluid from the blood; the condition may be caused by diabetes, high blood pressure and other disorders. But patients may not have symptoms until it is fairly advanced. As dangerous levels of fluid and wastes build up in the body, it can progress to so-called end-stage renal disease, or kidney failure. Without artificial filtering, known as dialysis, or a kidney transplant, the disease can be quickly fatal.

But especially in earlier stages, lifestyle changes that ease the burden on the kidneys can have a marked effect, including eating less salt, drinking less alcohol and keeping blood pressure under control. Doctors may suggest a “renal diet” that includes limiting protein, phosphorous and potassium, because kidneys can lose the ability to filter such products.

Sometimes modest changes can make a difference. Even small amounts of activity such as walking 60 minutes a week might slow the progression of kidney disease, according to a study published last month in the Journal of the American Society of Nephrology.

There are plenty of resources to help kidney patients manage their disease, including the kidney foundation website (kidney.org) and classes offered by the dialysis division of DaVita HealthCare Partners Inc.  The company says it educates about 10,000 patients annually at free “Kidney Smart” classes across the country.

Getting the Word Out                     Book Cover

Ms. Rae-Garwood says she decided to become engaged in her own care and share what she learned with fellow patients, after she was diagnosed in 2008 with Stage 3 kidney disease.

“People need to be educated and learn how to manage it so that they are not immediately on dialysis or on death’s door,” she says.

Ms. Rae-Garwood wrote a 2011 book, “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,” and started a blog to offer its contents free online. She developed an educational program, kidney-book-coverSlowItDown, which is used by health educators to provide free classes in various communities such as the Salt River Pima-Maricopa Indian Community in Phoenix.

She acknowledges that it isn’t always easy to follow her own advice. “The disease is somewhat in control, but I’m getting older,” Ms. Rae-Garwood says. “And while I can control my renal diet, it’s harder to lose weight, and exercise isn’t always an option since I’ve hurt this or that on my body.” She takes blood-pressure and cholesterol medications, and tries to keep stress levels down.

She retired from both a college teaching post and acting last year but still keeps up a Facebook page, Twitter account and her blog to get the word out. “I’m serious about getting the necessary education to the communities that need it,” she says.

The article was published while I was still in Los Angeles after a Landmark Worldwide weekend.  I had no car, didn’t really know where I was, and had no idea how to get to a newsstand… if those even still exist.  Luckily, my daughter Nima – all the way on the other side of the United States – had gotten a print copy.  She’ll be mailing it to me any day now. (Right, Nima?).

I’m old fashioned enough that even if I’ve printed a copy of the article from the internet, I want to feel the pulp of the paper (if that’s what paper is still made from) in my hands and let it yellow with age in my files.  I am one happy Chronic Kidney Disease advocate these days.

Until next week,

Keep living your life!

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2 CommentsLeave a comment

  1. I have CKD3 and am following the excellent advice on this website. I believe that I can take control of my condition by eating a healthy diet and getting back to exercising. At age 70, I have an 85 yr. old husband with early stage dementia, so I almost must try to keep my emotional state in check.

    • Good for you, Barbara! Don’t forget about keeping your stress level down – well, as best you can in your situation – and getting adequate sleep. As I reminded myself by going to a weekend seminar and then immediately starting to site see, that is so important. Might be a good idea to check with your doctor before you start exercising, too. I’m so happy you joined us on the blog. A thought, have you explored medications and supplements with your nephrologist?


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