Celina Medina has been managing her kidney disease since she was two years old. So, years later, when she noticed some redness and tenderness around her dialysis catheter’s exit site, she knew something was wrong.
Initially, her physician dismissed the concern. They told her she likely snagged the catheter’s tubing and protective cap on something. With a little time, they said, it should resolve.
Within 36 hours, Ms. Medina was being rushed to the emergency room by her family. She was diagnosed with a life-threatening bloodstream infection that was not responding to first-line antibiotic therapy.
Prevention and proactivity
Ms. Medina’s experience highlights the delicate balance patients receiving dialysis face: they must maintain a clear vascular access point (their lifeline) so that dialysis can filter their blood, but they must also intensely protect this vulnerable portal from external infection threats.
Dr. Anil Agarwal, a nephrologist and professor of medicine at the University of California San Francisco, has seen patients who have lost access to almost all viable catheter sites due to injury and severe scarring from prior catheters and subsequent infections. He is a proponent of making central venous catheters, which lead directly into the body’s main corridor, most commonly the jugular vein, resistant to infection. Advances in antimicrobial treatments for the catheters in central veins can lead to reductions in infections while also mitigating the risk of antibiotic resistance.
But no one solution is enough on its own. Due to the kidneys’ many important roles, reductions in function can dampen a patient’s immune system. “When there is kidney dysfunction, there is accumulation of toxins that impairs the immune system,” says Dr. Agarwal. Further, medications that help treat patients with immunological diseases that compromise kidney function or transplanted kidneys can also impede the immune system’s ability to prevent infection.
To maintain the health of patients with kidney disease, it takes both new technologies and continued diligent handwashing, catheter site care, and infection prevention measures. It also requires a strong and collaborative support system.
“There was a village behind my care”
“The patient is the most important person on the care team,” says Dr. Agarwal. The clinical team can recommend best practices and provide critical checks of the patient’s body systems. But the work of the clinical team must be informed by the patient or, as Dr. Agarwal put it, “the person we are all working for.” It is the patient who is the 24/7 caretaker of their health, and so they have a vast amount of lived experience that the clinical team is only seeing in snapshot form. Dr. Agarwal instills this perspective in his patients and clinical teams to ensure patients feel empowered and educated to participate in their care plan.
He encourages information sharing and reiterates that no question is too basic. During all of life’s moments outside the doctor’s office – dropping off kids at school, working, cleaning – it’s the patient who has to be the primary preventer of infections and detector of untoward signs and symptoms of life-threatening infection.
Ms. Medina also knows that information sharing can’t stay between the patient and the clinician. If the unfortunate situation happens where a patient is incapacitated, like when she had sepsis, she needs to be able to rely on her caregivers - family and close friends – to be able to speak for her and express her wishes.
Or, in the case of a transplant, a family member may even be the source of a life-saving organ donation.
A journey with, but not determined by, kidney disease
Ms. Medina’s story is a prime example of the many twists and turns patients with kidney disease face over years and decades.
As a child, Ms. Medina was on dialysis as she awaited an opportunity for a transplant, which was a relatively new treatment option at the time.
“Because of my weaker immune system, my family had to keep all my things separate from everyone else,” says Ms. Medina. Separate dishes, separate toys, and even separate spots for her towel. Despite all these measures, Ms. Medina’s memories of her childhood still largely revolve around long, frequent hospital stays.
Ms. Medina received her first transplant in her 20s, and it lasted 8 years before her body started to reject it.
Despite the setback, Ms. Medina was undeterred. She started a family and cared for two daughters while working. Back on dialysis, she chose peritoneal dialysis, which offered her more flexibility to be home with her two young daughters and not in a dialysis center for large portions of the week.
Today, Ms. Medina continues to thrive after a successful second kidney transplant from her brother. She went back to school and got her degree in sociology. And in addition to being an advocate for patient-centered care and organ donation, Ms. Medina leads an organization that houses homeless individuals in the Los Angeles area.
“A lot of us [kidney transplant recipients] want to keep being productive and want to give back as much as we can….because we have been blessed in so many ways.”
Special thanks to Ms. Celina Medina and Dr. Anil Agarwal for their willingness to share their stories and experience.
Article by Matthew Ryan for the Coalition for Supportive Care of Kidney Patients.