MARCH 2021
FRESENIUS KIDNEY CARE
Living life on her terms: Cancer survivor and activist champions at-home dialysis
In 2008, after experiencing high blood pressure during her pregnancy, Valarie Totten’s doctors informed her that she had kidney disease, which had progressed to end-stage renal disease (ESRD), or kidney failure. Having a limited understanding of ESRD and the available treatment options, Totten was not only frightened of the possibility that she could die from this disease, but equally afraid of receiving the dialysis she would need to survive.
“I asked them to do the bloodwork again,” says Totten. “I had seen the dialysis facilities where the patient was sitting in the room, and it seemed so scary. I knew I had to speak to my care team to learn more about what dialysis might look like for me.”
The flexibility to schedule treatments around your personal and professional schedule
Fewer dietary restrictions
Fewer medications
Fewer trips to the dialysis center
The ability to travel
The ability to administer your treatment without assistance
The ability to maintain the social and work life you love
Dialysis essentially takes the place of kidney function, filtering the blood and ridding the body of unwanted toxins, waste products, and excess fluids. For people choosing care at an outpatient center, it can require a life-altering commitment to dietary restrictions and three separate visits to a clinic every week, each session lasting approximately four hours.
Citing her family and her faith, Totten decided to fight for her life. Thanks to her doctors, nurses, and her multidisciplinary team at Fresenius Kidney Care, she was educated about her disease and informed of the benefits of home dialysis. Empowered by knowledge, she realized she didn’t have to be afraid and would be able to own her own story with kidney failure. Along with medication and proper care, home dialysis would not only help sustain her life, but allow her to live life to the fullest.
An under-recognized public health crisis
Chronic kidney disease (CKD), which can progress to kidney failure, impacts an estimated 37 million people in the U.S.—more than 1 in 7 adults. It’s the ninth-leading cause of death in the U.S., often brought on by diabetes or high blood pressure, but only about 10 percent of people with CKD are even aware they have it.
When the disease progresses to kidney failure, there are two common options for treatment: kidney transplant or dialysis. Thanks to advances in technology and awareness of alternative treatment options, patients are able to conduct dialysis in the comfort of their homes.
For home dialysis, treatment options include either peritoneal dialysis (PD) or home hemodialysis (HHD). Both options offer easy-to-use, portable machines that provide flexibility and increased quality of life. Peritoneal dialysis filters the blood naturally, using the lining of the abdomen, otherwise known as the peritoneum. There are no needles used in PD, and patients may be able to better preserve some residual kidney function. Many do this treatment while sleeping. In some instances, PD can even be done without a machine by manual fluid exchanges. Home hemodialysis filters the blood through a dialyzer or “artificial kidney,” using a solution called dialysate to remove unwanted substances.
During the COVID-19 pandemic, home dialysis offers the advantage of allowing patients to shelter in place—especially considering that people living with any stage of CKD face a higher risk of complications from the virus.
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Which Treatment Is Right For You?
Which type of home treatment is right for you may depend on your daily schedule, travel preferences, work commitments, and lifestyle, but both offer distinct benefits, including:
The flexibility to schedule treatments around your personal and professional schedule
Fewer dietary restrictions
Fewer medications
Fewer trips to the dialysis center
The ability to administer your treatment without assistance
The ability to maintain the social and work life you love
The Fresenius Kidney Care team was formative in helping Totten adjust to her new routine. Always just a phone call away, they would answer with patience and attentiveness as they addressed her concerns. Ensuring she received the highest quality of care, they even made home visits when Totten needed additional support.
“They always put me first,” says Totten.
In no time, Totten had mastered her treatment routine. After coming home from work, she would prep for dinner, finish housework, and then set up her in-home dialysis machine for treatment before she went to bed.
Freedom to move forward
For Totten, home dialysis also gave her the added flexibility to deal with another health crisis—cancer.
In 2010, she was diagnosed with breast cancer. In addition to her dialysis, she now faced regular radiation and chemotherapy treatments. Thanks to her experience with her kidney disease and treatment, Totten knew she had the strength to persevere.
“I had to press my way through and fight for my life,” says Totten. “Because I wanted to live and I wanted people to see that no matter the circumstances, by the grace of God, you can make it.”
Totten has more than made it. She is now a public advocate for kidney care, speaking to fellow dialysis patients through a support group that she started. Before COVID-19, she would visit patients at the dialysis facilities that she had so dreaded before, giving them words of encouragement, and talking to them about transitioning to home dialysis. Led by faith, Totten felt that this was the most important way for her to give back to those who had supported her throughout her own journey.
Where is she now? Since retiring, Totten has taken up an active lifestyle of traveling and spending time with her family. From her home in Greenwood, Mississippi, she’s visited Chicago, Texas, Kansas City, Memphis, and Miami. In each of those places, she was able to bring along her PD machine, keep up with her treatments, and not miss out on the life she was meant to live.
While Totten uses PD, deciding the type of home treatment that is right for you may depend on your daily schedule, travel preferences, work commitments, your doctor’s recommendations, and lifestyle. Both offer distinct benefits, including:
Home hemodialysis (HD)
You are connected to an artificial kidney (dialyzer) via a needle in your access site.
Key considerations:
-You can choose how to time your treatments, so you have more flexibility for social activities, work, hobbies, or school.
-You save travel time and transportation costs.
-You may have more freedom with your diet if you’re prescribed more frequent treatments.
-A nurse is available 24/7 by phone if you need assistance.
Home peritoneal dialysis (PD)
Your blood is filtered naturally using many tiny blood vessels in the lining of your abdomen—also called the peritoneum.
Key considerations:
-There are no needles and your blood never leaves your body.
-You can do PD on your own, without assistance.
-PD may help preserve residual kidney function.
-You can do PD almost anywhere—at work, at home, and while traveling.
-Home PD also gives you all the benefits listed for home HD.
With home dialysis, I could still work and travel in the midst of going through the training and treatment process. Once I adjusted to the treatment and learned how to set it up, it was wonderful. You can still have a life.
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