In a recent interview with our Community Relations Manager Jessica Finch, CKD patient, advocate, author, and blogger Gail Rae-Garwood describes the impact of her CKD diagnosis, how she took charge of her care, what she learned through her own research, and how she turned her experience into an opportunity to help fellow kidney health travelers on their own journeys.

A diagnosis out of nowhere

Gail had no reason to fear for her life when she moved from New York to Arizona years ago. She was just being practical when she sought a new primary care provider (PCP) who was close to her new home. Despite having Gail’s existing medical records, the new doctor–being thorough–ordered a comprehensive panel of blood and urine tests, then asked Gail to return to the office to discuss the results.

“She said, ‘You know, your GFR is 39,’ and I was just, ‘What?’ I didn’t know what GFR was, and I didn’t know if 39 was good or bad,’” Gail recalls of her shock and confusion. “The doctor said it could be kidney disease, and I said, ‘What is that? And how did I get it?’”

Into the unknown

The PCP secured Gail an appointment with a nephrologist for the next day, “And you know you don’t get an appointment with a specialist the next day,” Gail says, referring to the months-long wait that most new patients have unless their situation is dire.

She met with the nephrologist, and her “head was spinning” with his explanation of her test results. When it became clear that Gail wasn’t absorbing the information, the doctor said, “I’ll take care of you; you just show up for appointments.” That was a red flag for Gail. She wanted a doctor who would be a care partner, “not a father.”

The office nurse, noticing Gail’s annoyance, introduced her to another nephrologist in the group. Gail did like him better, but unfortunately, she says, “At that time, 15 years ago, nobody was speaking ‘patient-speak”; they were all speaking ‘doctor-speak,’ so I kept asking questions and kept asking questions,” and the doctor finally gave up and handed her some pamphlets.

Fortunately, the next person Gail spoke with was the doctor’s dietitian, who “was wonderful” and explained the basics to her in a way that she could understand. 

The road to understanding

“I was so naïve,” Gail says of herself at that time. When the dietitian told her that she would need to restrict her protein intake to five ounces per meal, as well as restrict her potassium, Gail asked, “What’s protein? What does five ounces of it look like? What’s potassium? What foods contain it?”

The dietitian patiently explained everything to her, Gail relates, adding “I think she was the first person I wasn’t angry with that I had CKD…I was actually able to hear what she said.” 

Armed with her new knowledge, Gail quickly became a “CKD zealot.” She constructed charts for documenting her protein, potassium, phosphate, sodium, and other electrolytes. “I have to laugh,” she says, “because now we have an app. You just put in the numbers, and boom.”

Other aspects of her lifestyle that she had to start paying more attention to included exercise, hydration, and sleep. “Sleep is magic,” says Gail. “Sleep is the best medicine.”

Her advice to clinicians

Speaking as an advocate, Gail offers advice not only to other patients, but to doctors, as well, and she emphasizes customized care. “Each patient is different,” she warns, “and you have to deal with the patient in front of you, not the patient who was here before or your everyday…patient.”

She also advocates earlier testing for an earlier diagnosis. “I feel if I had been told at stage one or two, I could have started changing what I needed to in my life, so maybe I would never get to stage three.” 

“It would also be nice,” she adds, “if, when you’re diagnosed with this, you were told that this is not an immediate threat.” The terror she experienced from not having that information, she feels, contributed to her inability to take in what the nephrologist was telling her.

“When they told me I had chronic kidney disease, I thought I was gonna die,” Gail shares. “I mean, we all die, but I thought I was gonna die, like, the next day. I was already in my head, making provisions for my 18-year-old here in Arizona, and my 21-year-old in New York, and it was unnecessary.”

Doing her own research and helping others

At the time all this was going on, Gail was teaching research writing at a local college, and she decided to put her research skills to personal use, finding out as much as she could about her condition. Finally, she says, “I understood what was happening to me, and how I could deal with it, and what I could do to slow it down, maybe even raise the GFR.”

It was then, she says, that she had the thought, “You know, this is really selfish. I should share this.” She wrote her first book, entitled What Is It, and How Did I Get It? which included the charts she had mapped out for tracking electrolytes, and started a blog, which is still flourishing. It occasionally features guest writers and includes everything from CKD basics to conditions like spinal stenosis, she says, that don’t seem related to CKD but are.

Turning what seemed like a tragedy into a teaching opportunity, Gail explains, is simply her way of putting into practice what she holds as a basic tenet in life: “We’re here to help others.”