Some days are good, some not so good for this Woodinville woman

Some days are good, some not so good for this Woodinville woman

Written by Deborah Stone
Monday, 13 September 2010 10:09

Glenda Roberts has good days and not so good days. The Woodinville woman has chronic kidney disease (CKD) and up until last January, she had effectively managed its progression for more than 40 years.

Diagnosed at the age of 21, Roberts staved off dialysis treatment for four decades through a combination of diet and exercise. She became a vegetarian and strictly controlled her sodium intake, while making sure to exercise five times a week.

She also gave up alcohol to prevent possible problems with dehydration, which has a negative impact on the kidneys.

In Roberts’ case, genetics played a major role in making her a prime candidate for the disease. Both her father and brother had CKD and succumbed from illnesses caused by the disease.

"I knew I would have to go on dialysis at some point in my life," says the local woman. "But, I also knew that research suggests that those who are on dialysis for less time do better with transplants when they eventually get them. So, I made a conscious choice to do everything I could to slow the progression of the disease."

Glenda_Roberts_3Roberts explains that there is not a cure for CKD; there is only treatment through dialysis or transplant.

In addition to genetics, other culprits that may be responsible for causing the disease include hypertension, diabetes and obesity.

"You are more prone to CKD if you have these conditions," clarifies Roberts. "I can’t stress enough how important it is to have a good diet and to exercise. These are things you can control."

The Woodinville woman lived with her disease, continuing to work in a number of executive positions with top corporations such as Microsoft. She kept active and retained a positive attitude toward life, with the understanding that one day, the disease would accelerate its course.

She says, "Things started to change back in 2009 and I knew the disease was progressing. Then, on January 13 of this past year, I ended up in the hospital. I had the flu and became dehydrated. And then I started fainting. My creatinine and potassium levels were elevated to dangerous levels. I realized the test results were bad when all of a sudden there was all this commotion around me and lots of people were called in. I ended up on dialysis."

Initially, Roberts went to Northwest Kidney Centers for the treatment three times a week, spending four hours at a time in the clinic. Now, however, she gives herself peritoneal dialysis in her own home.

"It’s wonderful not to have to go anywhere to do it," she says. "The dialysis is done while I sleep, so I don’t have to take all those hours out of my day. It makes it so much more convenient."

The Woodinville woman is also on several kidney transplant lists. She notes that most people in her situation stay on these lists for an average of five years.

"The quickest way off the list is to ask everyone you meet if they’re interested in becoming an organ donor," notes Roberts. "That’s what I do whenever I meet anyone. If not for me, then hopefully it will help someone else in need."

The local woman is committed to sharing her story and life experience to benefit others.

In this vein, she and her husband, Cal Sturdivant, started Options Unlimited International (OUI) Works, a non-profit organization dedicated to bringing awareness of CKD to the public and the need for more living donors.

Another major focus of the organization is to provide services to help families defray the spiraling cost of healthcare, particularly those uninsured, travel-and-living related expenses for the living donor, which are borne either by the living donor or the transplant recipient.

"The motivation behind establishing this organization initially stemmed from simply wanting to set up a channel to communicate with our friends and colleagues about Glenda’s condition," explains Sturdivant. "Everyone wanted to know what they could do to help. Instead of sending flowers, which only die eventually, we thought that if people wanted, they could contribute to helping others with the disease through monetary donations."

Sturdivant notes that the organization works with families to qualify them for assistance by helping in those special cases where it can provide some financial aid to help reduce the uninsured costs related to the living donor – costs that can become overwhelming and burdensome. It also provides information and guidance regarding other resources to meet donors’ needs.

"We don’t offer medical advice," emphasizes Sturdivant. "That’s for doctors to do. However, we are committed to delivering programs, services and information to high-risk groups, as well as to the general public because CKD and organ donation affect everyone, both directly and indirectly."

The organization promotes its messages to the community through social media and via participation in community fairs and health events, particularly those with a focus on reaching the socially and ethnically disadvantaged, since their risk for kidney failure is higher, yet they have a much lower rate of transplantation.

Additionally, OUI Works seeks to get the word out through partnerships and alliances that have larger networks.

Last spring, for example, the organization joined with Northwest Kidney Centers to host an "Eat Well to Live Well" training event. The session provided a free lunch and tasty recipes to promote a healthy lifestyle and make it easy on the whole family to follow a kidney-friendly diet. Nearly 50 people attended the class.

"We’re also hosting a virtual lunch each month where we highlight a recipe," adds Roberts. "We want to encourage people to prepare the dish and experience good tasting food that kids will also like."

And then there’s the CKD bracelet, a custom, handmade bangle that Sturdivant designed to serve as a teaching aid to educate the community about the disease, its growing impact on society and the desperate need for more living donors.

Each bracelet is made from the sterile, durable, waterproof materials used during peritoneal dialysis.

"Anyone can buy them and wear them to demonstrate their support for individuals with CKD," explains Sturdivant. "And the money goes back into our foundation." Roberts says, "They are great conversation starters, which is really the goal. People see them and ask about them, which is the perfect opening to begin a dialogue."

She adds, "When anyone hears about the numbers related to this disease, they are usually astounded. One in six individuals in our country has CKD and soon it will go to one in four if we don’t do anything to stop it.

"Twenty-six million Americans are in the early stages of kidney failure and 20 million more are at risk of developing it and don’t know it. These are shocking statistics."

Roberts remains upbeat and optimistic about her condition, which she believes is the best way to help her deal with the challenges she faces each day.

She has also learned to be patient, an admittedly difficult, but necessary quality for her to practice.

"Life is not easy for me these days, but I’m determined to live it as fully as I can," asserts Roberts. "And meanwhile, I feel it is my mission to tell people about CKD, and share my insights and perspectives. Knowing I can possibly help others in this way keeps me motivated to continue spreading the word and speaking out about this disease."

For more information about OUI Works, visit www.ouiworks.org.

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