B.T. Washington was a genuine American hero. He spent 30 years serving his country in the United States Air Force and earned the rank of Master Sergeant, the highest rank a non-commissioned officer can obtain, and one that is awarded very selectively.

Medical Stories was very privileged to spend time with this gentle and vibrant man for our PBS series. B.T. agreed to help us tell the story of his struggle with Chronic Kidney Disease out of a simple desire to help other people who might also be suffering the impacts of a disease they don’t even realize they have. B.T. passed away on February 28, 2021. We are deeply honored to share his story.

When our Medical Stories production team went to Memphis, Tennessee to meet then 73 year-old Booker T. Washington, we found an optimistic  man with an easy smile, actively enjoying his retirement with his wife and soul mate, Gemma Washington. A devoted husband and proud father, he was quick to tell us of his children’s accomplishments.  For many years, since he retired, he filled his days with routines and chores and sitting on the porch where he would laugh and tell stories with Gemma. We found B.T. was still dancing to his favorite disco tunes, caring for his prize Bantam hens, and maintaining his many hobbies and interests. All of this, even though he faced the daunting challenge of chronic kidney disease (CKD). 

He admitted that years ago, it was easier for him to go for a run and a heavy workout than to pay attention to doctors’ warnings about diabetes and high blood pressure. This ultimately led to a new routine to fit into his life: dialysis, which he managed at home with the help of Gemma.

B.T. was a fascinating man who put his family and his community at the top of his list of priorities and still found  time to volunteer to help others. He remained physically active throughout his illness and liked to work through his daily exercise routine by incorporating some of the training moves that earned him black belts in several disciplines in martial arts. B.T. was also a classic car enthusiast with a passion for collecting and restoring old Ford Mustangs.

Always working to find happiness and purpose in every day, B.T. continue to find ways to live his best life possible. He was–and is remembered as a warrior.

To see our Medical Stories profile of B.T. Washington and learn more about how he managed CKD, please watch below.

WHAT IS CHRONIC KIDNEY DISEASE?

Our kidneys are crucial for maintaining good health. These two fist sized organs filter our blood by removing wastes and extra water, which becomes urine. Our kidneys also make hormones, help control our blood pressure, and keep our body’s chemicals in balance helping maintain our general health.

Chronic Kidney Disease, or CKD, are conditions that damage our kidneys and prevent them from functioning normally. When our kidneys become damaged they can’t filter blood properly and waste can build up in our bodies leading to serious and ultimately life threatening conditions.

CKD is a leading cause of death in the United States and annually takes more lives than breast cancer or prostate cancer. Unfortunately, it is also a silent killer, especially at the beginning of the disease.

Indeed, 96% of people with mild CKD do not even know they have it, and 48% of people with severe CKD are unaware. This was the case with B.T.:

“I really did not have any symptoms, even to this day. I do not have any what I would call symptoms.”

SYMPTOMS OF CHRONIC KIDNEY DISEASE

Because kidney disease can advance without being noticed in the early stages, health professionals point to the importance of annual physicals to identify any changes in the functioning of the kidneys. B.T.’s doctor, Csaba Kovesdy, a Nephrologist with the University of Tennessee Health Science Center explains:

“The word chronic in chronic kidney disease means that it’s a longstanding illness. It leads to gradual decline in kidney function. One of the big dangers of kidney disease is that in its early and moderately advanced stages, it is completely silent and asymptomatic.”

While most people may not have any severe symptoms until their kidney disease is advanced, some that might be noticed include:

• more tired and less energy
• poor appetite
• trouble concentrating
• trouble sleeping
• muscle cramping at night
• swollen feet and ankles
• puffiness around the eyes, especially in the morning
• dry, itchy skin
• having to urinate more often, especially at night

RISK FACTORS FOR CHRONIC KIDNEY DISEASE

While anyone can get CKD at any age, there are some people who are more likely than others to develop it. People with an increased risk for CKD include:

• people with high blood pressure 
• diabetics
• people with a family history of kidney failure
• being older
• belong to a population group that has a high rate of diabetes or high blood pressure, such as African Americans, Hispanic Americans, Asian, Pacific Islanders, and American Indians

B.T. had been diagnosed with high blood pressure and diabetes when he was still in the Air Force:

“I don’t think I really, really took it seriously for a number of years. I did not make the connection that it had to do anything with CKD.”

According to Dr. Kovesdy:

“The biggest problem in kidney disease is that a longstanding illness like diabetes or high blood pressure will ultimately cause scarring of the kidneys.”

Additionally B.T. had the population risk factor of being an African-American, he had a family history of diabetes and he took large daily doses of Ibuprofen while he was in the military;

“While I was in the Air Force, I was continually bothered with hip pain to the point that I was prescribed ibuprofen. I was taking 800 milligrams, three times a day for the pain. And I did that for several years.” 

Dr. Kovesdy explains:

“One family of medications that can be a problem are the over-the-counter painkillers. Ibuprofen, indomethacin, for example. There’s a lot of these medications, if taken regularly and in large amounts, they can lead to kidney disease or the worsening of kidney disease.”

DIAGNOSING CKD

B.T. was first diagnosed with kidney disease in 1995, after he left the USAF in 1994.

Being a combat veteran and without any symptoms he didn’t take the diagnosis too seriously. He did wean himself off the ibuprofen and moved onto the next stage of his life with a new career:

“Upon the diagnosis, I was relatively cavalier about it. I didn’t feel that it was that big of an issue, quite frankly.”

B.T.’s kidneys got worse over time until he suddenly became very ill and learned his CKD had advanced:

“It just kind of overcomes you over time. Back about six months ago, eight months ago, I had gone down to Mississippi to visit some relatives and I became very ill. It was so bad I had to come in, I was hospitalized.”

B.T. was severely anemic, one of the results of advanced CKD:

“That was a wake up call when I realized how sick one could actually be.”

According to Dr. Kovesdy anemia is just one of the conditions a person with CKD can suffer with:

“Another common condition developing in patients with chronic kidney disease is one called mineral and bone disorders, which affect the health of the bones and can manifest with conditions such as elevated phosphate levels in the blood, or hyperphosphatemia, as we call it. And hence, another important focus of the therapy of patients with chronic kidney disease is to monitor and to treat these mineral and bone disorders through various medications that can lower phosphorus or phosphate levels in blood.”

Given that without treatment, CKD worsens irreversibly over time, it is extremely important to catch the disease in its earliest stages.

Diagnosing the stages and severity of CKD is very straightforward. Diagnosis is typically performed through a urine test measuring the level of small amounts of protein in the urine called albumin, and a blood test measuring the level of a molecule called creatinine.

The level of these molecules in the blood and then the urine will tell a physician whether or not the patient has early stages of kidney disease in the case of urine, or decreased kidney function by the results of the blood test.

These levels also allow doctors to determine how severe the kidney disease is. Dr. Kovesdy explains:

“So a person with chronic kidney disease could have stages one through five. Stage one and two are the earliest stages where the only sign is an abnormality in the urine. And the stages three, four, and five are stages with gradually decreasing kidney function. The kidneys are becoming weaker and weaker. And then after stage five, a person typically goes on to dialysis or receives a kidney transplant.”

B.T. didn’t learn how severe his CKD had become until several years ago when he was diagnosed with end stage kidney disease. At that point treatment options become limited to dialysis and/or a kidney transplant. According to Dr. Kovesdy: 

“Once a person develops end stage kidney disease, we need to start some form of a treatment to replace that function if they want to live. And dialysis is the most common treatment that’s employed.”

DIALYSIS

There are two types of dialysis. Hemodialysis is a treatment where blood is removed from the body and it’s run through a dialysis machine. The machine cleanses the blood and then the blood is run back into the body. 

Peritoneal dialysis, the second type, is done using the patient’s own abdomen, the belly, where a sterile fluid is run into the belly. It can sit there for a few hours. In that time, it sucks out the waste materials from the blood, and then the fluid is removed.

B.T. chose peritoneal dialysis and after completing a six-day seminar with his wife he is able to do it at home every evening for 11 hours, often while he sleeps.

B.T. wants people to know that even though it sounds horrible it’s an effective treatment that helps him live a full life:

“Even with dialysis, I think that oftentimes people think that it’s a death sentence. They see it as something that, oh, your life is all over. No, it’s not. In fact, you might be surprised that some of that tiredness goes away.”

B.T. also exercised daily with military precision and discipline and is very dedicated to eating a nutritious diet.

Dr. Kovesdy had nothing but praise for the way B.T. lives his life to the fullest every single day: 

“He’s been a patient of mine ever since he developed moderate advanced stages of kidney disease. And during the transition from advanced stages to end stage kidney disease. Extremely knowledgeable about his condition, extremely involved in his health care, very meticulous about taking all the medications. I wish all of my patients were like that.”

B.T. Washington on his philosophy:

“To me, life is about living the best possible life you can. Use this body that you have to the best that you can, take as good of care as you can of it as you can, until you no longer can. And having said that, that gives you a different perspective about life itself, about enjoying life, about doing the right thing, about treating people right to include yourself.”

Dr. Kovesdy is inspired by B.T.’s attitude, courage to live so fully, and optimism:

“The field of CKD is undergoing a major transformation. We are now experiencing a boom in the development of new medications that are meant to delay progression and worsening of kidney disease. The goal would be to catch the disease early, to slow down the disease, and hopefully reverse the disease.”