Chronic kidney disease: the silent killer

Michael Barber introduces himself as “Thelma’s husband.” Sitting next to him on their living room couch, Thelma Barber immediately interjects: “You’re more than just a husband. You’re my best friend.” Michael is also Thelma’s caregiver. She is a two-time kidney transplant recipient and was diagnosed with chronic kidney disease (CKD) in 1998. The disease, which is one of the leading causes of death globally, accounts for five to ten million deaths each year.

The need to be flexible

Living with CKD means living with a permanent reduction in kidney function. For Thelma, that has resulted in her body struggling to regulate temperature. “I can go from hot to cold in less than 30 seconds,” she says. To improve her comfort, Michael installed ceiling fans with remote controls and gave Thelma a personal fan, a personal heater and heating pads for the bed. Depending on how she felt, both the air conditioning and the fan could be turned on at the same time, or everything could be shut off to a point where it is too hot for someone else. Michael adds: “This can happen throughout the night.”  

His flexibility goes beyond the varying house temperature; it forms the basis of their teamwork as parents. With two 14-year-old boys at home, they have plenty on their to-do list. Even on days where she may not be feeling her best, Thelma still pushes herself. “As a wife and mom, there are just some things I’m going to need to do, and I do them because I do feel a little bit better,” she says. Michael sums it up: “Thelma likes to do things.” 

However, she is not always able to complete them. On top of CKD, Thelma also has a heart disease and type 2 diabetes. This is particularly common with patients suffering from conditions that affect their cardiovascular, renal or metabolic system. One in three patients living with CKD, heart failure or type 2 diabetes also suffers from one of the other diseases because of the interconnectivity of these organs. Like Thelma, many patients require plenty of rest. Their energy level also varies. While she can now attend multiple doctor appointments in a day, there were times where Thelma was bedridden. No matter what, however, Thelma and Michael’s tag-team relationship ensures their family keeps moving. “Whatever Thelma doesn’t do, I do,” he says. She finishes: “And vice versa.”

Difficult to diagnose

While Thelma has at times been physically unable to get out of bed, like during her pregnancy with the twins or before her kidney transplant, there are also periods where she is emotionally unable to. Speaking about her diagnosis, she talks of a crippling depression as she came to terms with it. “For years I suffered with bad breath but no cavities. I also had swollen legs. But doctors couldn’t tell me what it was,” she explains. “There were days where I didn’t even want to get out of bed, especially during the times when I was on dialysis because I had already stopped with the function of urinating.” 

Her experience is similar to other CKD patients. Kidney disease is labelled a “silent killer” due to its lack of physical symptoms. Even with symptoms present, these are often overlooked or attributed to another health issue. This presents a real problem for patients, where early diagnosis is key to the progression of kidney disease to kidney failure.

Joined at the hip

Things for Thelma and Michael have drastically improved with her second kidney transplant, but she still gets emotional thinking about what they have been through. “He has gone above and beyond and has really lived out our (wedding) vows,” she says, holding a tissue in one hand and his hand in the other. “He could have packed up and left.” Instead, they sit together 27 years into their marriage. “It’s weird without you at my hip,” Michael says, looking at Thelma. 

That extends to how he unwinds, which includes reading, going for a walk with their dog, Coco, or going to the movies with Thelma. “Our philosophy in this house is we care for each other. We’ve been doing that since we were in the Bronx,” says Michael. His advice for other caregivers is to remain flexible and to find their own source of strength. For both, that takes the form of preparing for things that can go wrong and praying. 

And laughter, Thelma adds whose smile never left her face. “I’ve always been one to keep a positive attitude, and I never let anyone, or anything steal the joy that’s deep down inside my spirit.”