Fallon Bell’s Kidney Disease Journey
How was your overall health prior to your diagnosis?
I thought my overall health prior to my diagnosis was great. I had no complaints.
Were/are you pro-active about your health?
Yes, I am proactive about my health. My experiences as a patient and my knowledge as a nurse has helped me understand the importance of being proactive and involved in my own care.
When and how were you diagnosed with FSGS?
I was diagnosed with FSGS at the age of 19. After going to the emergency room a couple of times, still unsure why my legs were swollen and why I was so tired, I went to see my primary care physician (PCP). My PCP detected protein in my urine and referred me to see a nephrologist right away. A kidney biopsy later confirmed my diagnosis of FSGS.
How did you feel when you were diagnosed with kidney disease?
When I was diagnosed with kidney disease it all felt so surreal. I thought I had been healthy all my life, and then all of a sudden I was diagnosed with a chronic disease — it was overwhelming. I couldn’t believe it was happening to me and I had no clue what to expect or what to do. It was scary to say the least.
Looking back, what do you wish you had known about kidney disease prior to your diagnosis?
Prior to being diagnosed, I wish I knew more about my family’s health history so I could have shared that info with my PCP. By sharing my family health history, that might have prompted my PCP to ask me different questions, check additional lab tests and/or provide me with education about health conditions I could be at risk for and how to prevent them.
What were/are your most bothersome symptoms and how did they impact your life?
The most bothersome symptoms I experienced were those that occurred because I was retaining too much fluid. After restarting hemodialysis for the second time, I no longer produced urine. The only way I was able to get rid of excess fluid in my body was through dialysis. I felt tired and heavy because of the extra fluid weight I was carrying, and at times, I felt self-conscious about my body because I would have swelling around my eyes, legs, and abdomen from the extra fluid.
What has your path through the healthcare system been like? Have you experienced inequity?
Thankfully, I have had a good experience through the healthcare system. I contribute that to me being involved in my health care, becoming an advocate for myself, learning as much as I could about whatever I had going on at the time, and asking a lot of questions. Again, thankfully, I have not experienced inequity as many others have, but I am aware that it exists.
As a Registered Nurse, I encourage my patients to seek help elsewhere if they are not happy with the care that they are being provided. I tell them that they have a right to good, quality health care and anything less is unacceptable. It’s disappointing to hear how some healthcare workers have treated patients and how that has made them feel, but I strive to reverse their experience and outlook on healthcare.
How has your diagnosis impacted your family?
My diagnosis has allowed my family to have more open communication about not only my diagnosis, but theirs as well, and we’ve been able to learn from one another and make better decisions about our healthcare moving forward.
My mother and aunt were also diagnosed with FSGS; my aunt was diagnosed first, then myself, and later my mother. My father is now on dialysis, but for reasons unrelated to FSGS. Even though many of us have the same diagnosis, we have all had different, yet very relatable, experiences with kidney disease.
Knowing that Black Americans are 7 times more likely to develop kidney disease, what would you like to say to your friends, family, and community?
Go to the doctor regularly and not just when you feel like something is wrong, because it may be too late. Learn about your family history, your risk for certain health conditions, and ways that you can prevent them from happening to you and other loved ones. Knowledge is power! Read and look things up to gain a better understanding, and don’t be afraid to ask questions. Encourage others around you to do all of the above.
Why do you share your story? What do you hope people reading your story will gain from your experiences?
I share my story in hopes to inspire and educate others that are going through what I have been through, to help them learn from both my mistakes and the positive actions I’ve taken in my life. I share my story with those that are at risk for CKD in hopes to inspire and educate them to make the needed changes in their lives so they won’t have to go through what many others and myself have gone through.
I always tell people that once you get to the point of having to start dialysis, there is no turning back. Everything that comes with it you will have to deal with for the rest of your life. FSGS is an irreversible kidney disease diagnosis, and there was nothing I could have done to stop it.