Home Dialysis, COVID, and Beyond - A Patient Profile: AAKP Ambassador Melissa Bensouda
At the age of 24, Melissa was diagnosed with chronic kidney disease (CKD) after giving birth to her second daughter. In June the following year, she began hemodialysis treatments in center, and six months year later, chose to participate in a nocturnal home hemodialysis program. After six weeks of extensive training, Melissa set up a machine in her bedroom and dialyzed on her own every other night for eight hours while she slept.
In April of 2012, after many years on nocturnal home hemodialysis, she received the gift of life from a deceased donor. However, nearly five years post-transplant, Melissa’s transplant kidney rejected, causing her to resume dialysis at home.
As a busy working mom, Melissa initially chose home hemodialysis after a year in center because she felt home dialysis would give her the freedom to spend time with her children and the ability to continue working full time. She wanted to provide her young children with as close to a normal life as possible. In addition to spending more time with her children, home dialysis provided her with opportunities to travel, visit loved ones, and have a less restricted diet than she had on in-center dialysis. Overall, Melissa felt home dialysis therapy gave her more control and improved her quality of life.
Melissa reflected that her first year in-center was very challenging. “I felt very restricted with very limited freedom. I felt that doing in-center hemodialysis was forcing me to live the rest of my life, outside of work, on a calendar schedule, and I often didn't feel as good as I feel now simply because I'm able to do more frequent and longer treatments on a home dialysis therapy.”
With home dialysis, Melissa likes to be in control of her dialysis from the comfort of her own home. She says patients can be assured that their dialysis will be completed in a timely matter because they are in control and not subject to circumstances like the inability to drive to and from treatments, lack of transportation, bad weather, lack of dialysis chairs, lack of medical staff, or others that can be problematic for in-center hemodialysis patients.
Melissa adds that she feels “safer, less anxious, less depressed, and overall, better doing home hemodialysis.” She has traveled across several states in the U.S., where the rules for treatments were different, and the staff was also trained differently, and some seemed to have had less training than her. This reaffirmed for Melissa that she had made the right choice by dialyzing at home.
Getting the best possible care is very important for her, which is why she chooses to do dialysis at home. She says home hemodialysis may not be the right choice for every kidney patient, and it's not easy. Education and training are important, and just like any other healthcare task or medical task, it involves several things like ordering supplies, being very in tune with your labs and how you're feeling, and monitoring your blood pressure. “If you have the willingness and desire to live a productive life and have better quality of care on dialysis, then home dialysis therapy such as home hemodialysis or peritoneal dialysis should certainly be an option considered,” Melissa says.
The COVID-19 pandemic brought light to the challenges faced by many kidney patients due to the need to social distance and the availability of healthcare professionals who administer dialysis treatments. “It's great to even have options. I'm hoping that this (pandemic) does revolutionize our view on home dialysis, as both a safety measure and something that better enables the quality of life for patients,” Melissa said.
For patients approaching dialysis, it is important to ask questions. Melissa encourages fellow patients to ask things like, “What is dialysis?” and “What are the different options for treatment?” Melissa adds, “The first step is just simply asking the question, recognizing that home dialysis is an option, and then finding the healthcare teams that support that journey.”
For patients already in-center, Melissa recommends having a conversation with their healthcare team and showing interest in self-care and the medical equipment being used. She says there may be some things that patients can do in-center that support a transition to a home therapy. “There are opportunities (in center) to stick your own needles (self-cannulation) or track how the dialysis technicians and the nurses are using the machine,” Melissa says. “Show an interest, ask questions, and the healthcare team will recognize your willingness to learn. This will help set the stage for you to dialyze at home.”
Melissa advocates for technology, education, and research to improve outcomes of those affected by kidney disease. She adds that having access to FDA-approved treatments and devices means patients have options and a voice in their care. “It means I can choose based on my wants and needs and which option is the right fit for my personal circumstances, rather than having that choice made for me. It’s very important to self-advocate and discuss with your healthcare team what is right for you.”
Melissa encourages those eligible for home dialysis, and who may even have the slightest bit of interest in it, to inquire with their healthcare team about the pathway to home dialysis. Whether you are starting a home therapy or transitioning to a home therapy, the choice is yours.
- Kidney Patients, COVID-19 and Beyond
- Understanding Your Home Hemodialysis Options
- Understanding Your Peritoneal Dialysis Options
- Understanding Your Kidney Transplant Options
- A Global Need to Support an Ever-Growing Home Dialysis Community: Innovations & Access to Dialysis
- Advancing Home Dialysis Care: Aligning Policies Across Agencies
- Innovations in Home Health: Lessons from COVID-19 & Impact on Future of Kidney Care
- Dialysis Transition: What Every Patient & Caregiver Should Expect