Always prepared for the unexpected

Marc Coronel, 37, from Los Angeles, California, US, shares his kidney health story after having been diagnosed with focal segmental glomerulosclerosis (FSGS) and tells how he subsequently received a kidney transplant. He recounts how he managed his condition while on dialysis and remains prepared for unforeseen events as a kidney transplant patient. Taking courage from his own experience, he became a patient advocate, using his voice to raise awareness for those who may not have one.

What was your diagnosis, what is your experience with kidney disease, and can you briefly describe your experience as well as the treatment you have received?

My name is Marc, and I was diagnosed with focal segmental glomerulosclerosis (FSGS). After my diagnosis, I was prescribed an assortment of medications to help me cope with the reality of having kidney disease. Blood pressure medications, steroids, vitamins, and other medications were part of my daily routine. Additionally, I had to make significant dietary changes, including limiting my protein intake. The doctors told me I had several years before I would need dialysis and, eventually, a transplant. After 8 years of fighting, I was placed on dialysis, which prompted me to turn to social media in my search for a kidney transplant. I eventually received a kidney transplant on December 10, 2019.

Have you ever faced an unexpected event that compromised your or a relative’s access to diagnostics, treatment, or care? If so, can you explain in a few lines your experience and how you/your relative overcame the difficulties?

During my time on dialysis, my dialysis dietitian advised me to limit my fluid intake. I was in and out of the hospital for several weeks due to fluid overload, which caused me difficulty breathing. I was able to manage my fluid intake by measuring how much I drank each day, limiting my salt intake, and really being proactive with my care after many times in the hospital.

With COVID-19 being an unexpected global event that affected large parts of the world, can you tell us about your experience coping with the pandemic as a kidney disease patient and the challenges you faced during this time?

When COVID was announced and the global pandemic broke out, I had only had my transplant three months before. The most challenging part of recovering was having to go to weekly check-ups while following COVID protocols and not being able to somewhat enjoy my second chance at life. 

As a patient, how do you prepare for unexpected events that you may face in your region (access to treatment and care, moral and material support, access to the hospital, etc.)?

As a kidney patient, I need to be prepared for unforeseen events that may limit my access to medical care and resources.
I try to create an emergency kit that includes a 3-day supply of medications, bottled water, non-perishable food, a first aid kit, and any medical equipment I may need. I usually place this kit in a convenient location and make sure my family members or friends know where it is.

Based on your experience, what would you urge policymakers, government, and/or health services to consider as regards supporting kidney patients in the case of unexpected events?

I would urge policymakers, government, and healthcare services to consider supporting kidney patients through patient education. The government and healthcare organizations should prioritize patient education programs to help kidney patients understand their condition. Most of the time, understanding medical terms is really challenging. In addition, I would encourage making available more treatment options in case of an emergency and, finally, informing kidney patients on diet, stress management, and staying active.