I consider myself lucky. In my physical journey through chronic kidney disease (CKD), from diagnosis to transplantation, I had only one complication. However, my trajectory in the health care system had many ups and downs and led me to find my voice.
I was determined to be proactive with my health because of the health problems that affect both sides of my family. My doctor is interested in all of his patients and supported my health plan.
I found out what my medical insurance would cover and would not cover for preventive testing, medications and the limited number of specialists and facility options in my network. Overall, my doctor thought we had a good plan. What we were not ready to make was a diagnosis of kidney disease.
During my annual check-up, I did a physical exam from head to toe and a complete set of tests. The tests came back showing that my kidney function was below normal and that there was protein leaking into my urine. My doctor admitted that he didn’t know much about kidney problems and referred me to a nephrologist.
The nephrologist I could see would retire in a year. He told me that his interest was not in the complete care of my condition, but in his retirement. He wanted to do a few more tests, including a kidney biopsy.
The term “biopsy” is often heard as a negative word in the black community. A biopsy means that something is seriously wrong and the chances of having a quality life are very low, if not counted in years or days.
As a community of color, we are suspicious because of history and myths. Many middle-aged and older blacks – especially men – will discontinue their care before performing elective procedures for fear of a negative result.
The nephrologist explained the steps of the biopsy procedure, but did not explain what specific information he was looking for. The biopsy results showed scars from the filters inside my kidney.
I was told that there was no explanation for how this happened, but that the disease I had was called focal segmental glomerulosclerosis.
The nephrologist’s treatment plan included high doses of prednisone for 2 weeks, weaning for the next 4 weeks, and a low sodium diet.
After 6 weeks, I was told that my kidney function was normal, but “be careful because this problem can come back again”. It entered my medical file as a problem solved. Any future tests related to monitoring my kidneys would be considered elective procedures under my insurance.
A few years later, my general practitioner noticed symptoms similar to those I had before. He was able to order complete tests and saw that there was protein leaking into my urine.
I was referred to another nephrologist, but due to my insurance, my options were limited. The new nephrologist did a few more tests and – without a biopsy – I was diagnosed with stage 3 CKD.
This nephrologist analyzed laboratory results, medical symptoms, and academic medical history based on age, sex, and race – assumptions and stereotypes – rather than looking at the person individually.
I became part of your patient and treatment assembly line. I called it the “trust and obey” care plan method, in which doctors expect you to trust and obey, but are not concerned with seeing you as an individual.
In a 20-minute consultation, I was informed about creatinine levels and glomerular filtration rate (GFR). I was told that my kidneys would fail and I would need to have a fistula for dialysis.
His care plan included prescribing medications that, hopefully, would slow my CKD progression before I started dialysis. I found out that I was responsible for my kidney education, as neither he nor his team offered me any information in writing.
This plan to trust and obey made me take 16 medications a day. In addition, I had developed type 2 diabetes and needed frequent insulin injections. In 18 months, I went from stage 3 to stage 5 of kidney disease, which is considered end-stage kidney disease, and was put on dialysis with no real explanation of how it happened so quickly.
CKD Stages
There are 5 stages of CKD. Stage 1 is when there is mild damage, but normal kidney function remains – stage 5 is when the kidneys stop functioning. If identified early, the progression of the disease can be prevented or delayed for years.
Unfortunately, many people find that they have CKD at a later stage, when there is already moderate to severe damage. This provides limited time to plan a life without the kidneys.
The results of the laboratory were provided verbally during the consultation. I received them in writing after the consultation, but with no explanation of how to read or understand the values in my lab work. I was also unaware that there were two types of TFG scores: one for the general public and one for blacks (the “estimated TFG value for African Americans” in my results).
What was stressed for me was to make an appointment to have a fistula for dialysis. Two fistula settings failed and I had huge direct costs. Before a third fistula placement was requested, I did my own research and discovered other types of dialysis that could be done at home.
I asked about these alternatives and finally received a class on dialysis treatment options. After participating in the class, I opted for peritoneal dialysis (PD). PD offered a better quality of life for me. Unfortunately, I found that many black patients in my nephrologist’s office received only hemodialysis.
My dialysis nurse introduced me to my new normal, clearly explaining what to expect during dialysis procedures. Through discussions, training and educational materials, I started PD treatment and understood more about kidney disease. I was able to mentally accept CKD, dialysis and the importance of staying healthy in the hope of becoming a possible transplant candidate.
After a few months on dialysis, my nephrologist recommended testing to see if I was eligible for the transplant list. When I asked why I had to wait until that moment to take the test, I was told that “that was the process”. First you have dialysis and then you go on to transplant.
The facilities and staff at the transplant center were excellent. I was free to ask questions and they gave the answers in a way that 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.
Trusting and obeying ended when I made the list of transplants. I had a voice in the future of my care. I brought this with me, and my nephrologist was not happy that I found my voice.
After a blood pressure crisis, my daughter wanted to donate her kidney to me, although I didn’t want her to do it. She was considered ineligible, but her housemate and sister from the college fellowship performed and were a perfect match.
I ended my doctor-patient relationship with my nephrologist months after my transplant. Although I was still in the care of the transplant center, the nephrologist wanted to make changes to my care without consulting the transplant center. His “by the numbers and by the books” style was not for me.
I have a voice and now I use it so that other people’s travels are not so difficult.
More information about CKD
In the United States, it is estimated that at least 37 million adults have CKD and approximately 90% are unaware that they do. One in three American adults is at risk for kidney disease.
The National Kidney Foundation (NKF) is the largest, most comprehensive, and oldest patient-centered 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 he received his kidney transplant in 2016, he reciprocated, alerting both to kidney disease and the need for organ donors, with a focus on low-income black people. He is a patient advocate and peer counselor, serves on several National Kidney Foundation committees and is an ambassador for several other national chronic and kidney disease organizations. He is married and has four adult children and a grandson.