I consider myself fortunate. In my physical journey through chronic kidney disease (CKD), from diagnosis to transplant, I’ve had only one complication. However, my path through the healthcare system had many peaks and valleys and led me to find my voice.
I was determined to be proactive with my health because of health issues that run on both sides of my family. My doctor takes an interest in all his patients and was supportive of my health plan.
I discovered what my medical insurance would and would not cover for preventive tests, medications, and the limited number of specialists and facility choices in my network. Overall, my doctor felt we had a good plan. What we weren’t ready for was a diagnosis of kidney disease.
During my annual checkup, I had a head-to-toe physical and a full set of tests. The tests came back showing that my kidney function was lower than normal and that there was protein leaking into my urine. My doctor admitted that he didn’t really know a lot about kidney issues and referred me to a nephrologist.
The nephrologist I was able to see was retiring in a year. He let me know that his interest was not in full care of my condition but in his retirement. He wanted to do some further tests, including a kidney biopsy.
The term “biopsy” is often heard as a negative word in the Black community. Biopsy means something is severely wrong and the odds of you living a quality life are greatly reduced, if not numbered into years or days.
As a community of color, we’re suspicious due to history and myths. Many middle-aged and older Black people — especially men — will stop their care before having elective procedures for fear of a negative outcome.
The nephrologist explained the steps of the biopsy procedure but not what specific information he was looking for. The biopsy results showed scarring of the filters inside my kidney.
I was told that there was no explanation for how this happens but that the disease I had was called focal segmental glomerulosclerosis.
The nephrologist’s treatment plan included high dosages of prednisone for 2 weeks, weaning me over the following 4 weeks, and a low sodium diet.
After 6 weeks, I was told my kidney function was in a normal range but to “be careful because this issue may come back again.” It went in my medical file as a resolved issue. Any future tests related to monitoring my kidneys would be considered elective procedures by my insurance.
A few years later, my general doctor noticed symptoms similar to those I’d had before. He was able to order full tests and saw there was protein leaking into my urine.
I was referred to another nephrologist, but due to my insurance, I had limited choices. The new nephrologist did some more tests and — without a biopsy — I received a diagnosis of stage 3 CKD.
This nephrologist went by lab results, medical symptoms, and academic medical history based on age, gender, and race — presumptions and stereotypes — rather than looking at the individual person.
I became part of his assembly line of patients and treatments. I called it the “trust and obey” care plan method, where doctors expect your trust and obedience but don’t bother to view you as an individual.
In a 20-minute appointment, I was told something about creatinine and glomerular filtration rate (GFR) levels. I was told that my kidneys would fail and I would need to have a fistula placed for dialysis.
His care plan included prescribing medications that would hopefully slow down the progression of my CKD before I started dialysis. I found I was responsible for my kidney education, as neither he nor his staff offered me any written information.
This trust and obey plan had me taking 16 medications daily. Additionally, I had developed type 2 diabetes and needed frequent insulin injections. Within 18 months, I went from stage 3 to stage 5 kidney disease, which is considered end stage renal disease, and was placed on dialysis with no true explanation of how this had happened so quickly.
Stages of CKD
There are 5 stages of CKD. Stage 1 is when there’s slight damage, but normal kidney function remains — stage 5 is when the kidneys stop working. If identified early, disease progression may be prevented or delayed for years.
Unfortunately, many people find out they have CKD at a later stage, when there’s already moderate to severe damage. This provides limited time for planning a life without one’s kidneys.
Lab results were given verbally during the appointment. I received them in written form after the appointment but with no explanation of how to read or understand the values in my lab work. I also didn’t know there were two types of GFR scores: one for the general public and one for Black people (the “estimated GFR African-American” value on my results).
What was stressed to me was making an appointment to get a fistula put in for dialysis. Two fistula placements failed, and I had huge out-of-pocket costs. Before a third fistula placement was ordered, I did my own research and found out about other types of dialysis that could be done at home.
I inquired about these alternatives and was finally offered a class on dialysis treatment options. After participating in the class, I chose to do peritoneal dialysis (PD). PD offered a better quality of life for me. Unfortunately, I found that many patients of color from my nephrologist’s office were offered only hemodialysis.
My dialysis nurse introduced me to my new normal, clearly explaining what to expect during the dialysis procedures. Through discussions, trainings, and educational materials, I began PD care and understood more about kidney disease. I was able to mentally accept CKD, dialysis, and the importance of keeping myself healthy in the hopes of becoming a possible transplant candidate.
After a few months on dialysis, my nephrologist recommended testing to see if I qualified for the transplant list. When I asked why I’d had to wait until this time to be tested, I was told “that was the process.” First you do dialysis, and then you move to transplant.
The facility and staff at the transplant center were great. I was free to ask questions, and they gave answers in a way I understood. They provided information about the transplant procedure, kidney disease, and post-transplant life. They also gave me the right to say yes or no to aspects of my care plan.
I was no longer an object — I was a person.
Trust and obey was over when I made the transplant list. I had a voice in the future of my care. I brought this back with me, and my nephrologist was not happy that I had found my voice.
After a crisis with my blood pressure, my daughter wanted to donate her kidney to me, even though I didn’t want her to do so. She was deemed ineligible, but her housemate and college sorority sister came forward and was a perfect match.
I ended my doctor-patient relationship with my nephrologist months after my transplant. Although I was still under the care of the transplant center, the nephrologist wanted to make changes to my care without consulting with the transplant center. His “by the numbers and books” style was not for me.
I have a voice, and now I use it so other people’s journeys won’t be so rough.
More information about CKD
The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the United States. For more information about NKF, visit www.kidney.org.
Curtis Warfield is a Senior Quality Analyst for the State of Indiana. Since receiving his kidney transplant in 2016, he has given back by bringing awareness to both kidney disease and the need for organ donors, with a focus on low income people of color. He is a patient advocate and peer counselor, serves on several committees with the National Kidney Foundation, and is an ambassador with several other national kidney and chronic disease organizations. He is married with four adult children and one grandchild.