I consider myself happy. In my physical journey through chronic kidney disease (CKD), from diagnosis to transplantation, I have had only one complication. However, my path through the health care system had many peaks and valleys and led me to find my voice.
I was determined to be proactive with my health due to health issues occurring on both sides of my family. My doctor is interested in all his patients and supports my health plan.
I discovered what my medical insurance would and would not cover for preventative tests, medicines and the limited number of specialists and facilities in my network. Overall, my doctor felt we had a good plan. What we were not ready for was a diagnosis of kidney disease.
During my annual examination, I had a physical test and a complete set of tests. The tests came back showing that my kidney function is lower than normal and that there are proteins leaking into my urine. My doctor admitted that he did not really know much about kidney problems and referred me to a nephrologist.
The nephrologist I could see is retiring in a year. He let me know that his interest was not in taking care of my condition, but in his retirement. He wanted to do further tests, including a kidney biopsy.
The term “biopsy” is often heard as a negative word in the Black community. Biopsy means that something is terribly wrong and that the chances of you living a quality life are significantly reduced if it is not counted in years or days.
As a color community, we are suspicious of history and myths. Many black people of middle age and older – especially men – will discontinue their care before undergoing 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 results of the biopsy show that the filters inside my kidney are scars.
I was told that there is no explanation for how this happens, but that the disease I had is called focal segmental glomerulosclerosis.
The treatment plan of the nephrologist included high doses of prednisone for 2 weeks, which weaned me over the next 4 weeks and a low sodium diet.
After 6 weeks, I was told that my kidney function was within a normal range, but to be “careful, because this problem can come back.” This is a solution for my medical file. Future tests related to the monitoring of my kidneys will be considered by my insurance as selection methods.
A few years later, my general practitioner noticed symptoms similar to those I had before. He was able to order complete tests and see that there were proteins leaking into my urine.
I was referred to another nephrologist, but because of my insurance I had limited choices. The new nephrologist did some more tests and without a biopsy I got the diagnosis of stage 3 CKD.
This nephrologist, according to laboratory results, medical symptoms, and academic medical history, based on age, gender, and race — presumptions and stereotypes — rather than looking at the individual.
I became part of his assembly line of patients and treatments. I called it the care plan method “trust and obey”, where doctors expect your trust and obedience, but do not bother to consider you as an individual.
In a 20-minute appointment, I was told something about the levels of creatinine and glomerular filtration rate (GFR). I was told that my kidneys would fail and that I would have to place a fistula for dialysis.
His care plan included prescribing medication that would hopefully slow down the progress of my KKD before I start dialysis. I found that I was responsible for my kidney education as neither he nor his staff provided me with any written information.
In this trust and obedience plan, I had to take 16 medications daily. Furthermore, I developed type 2 diabetes and I needed regular insulin injections. Within 18 months, I switched from stage 3 to stage 5 kidney disease, which is considered end-stage kidney disease, and was placed on dialysis without giving a true explanation of how it happened so quickly.
Stages of CKD
There are 5 phases of CKD. Phase 1 is when there is minor damage but normal kidney function remains – stage 5 is when the kidneys stop working. 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. It offers limited time to plan a life without a human.
Laboratory results were given orally during the appointment. I received it in writing after the appointment, but without explaining how to read or understand the values in my laboratory work. I also did not know that there are 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 stressed me out was making an appointment to set up a fistula for dialysis. Two fistula placements failed, and I had huge costs out of pocket. Before ordering a third fistula placement, I did my own research and found out about other types of dialysis that can be done at home.
I inquired about these alternatives and finally offered a class on treatment options for dialysis. After attending class, I chose to do peritoneal dialysis (PD). PD offered me a better quality of life. Unfortunately, I found that many patients of color were offered hemodialysis only at my nephrologist.
My dialysis nurse introduced me to my new normal and explained what I could expect during the dialysis procedures. Through discussions, trainings, and educational materials, I began caring for PD and understanding more about kidney disease. I could mentally accept CKD, dialysis and the importance of keeping myself healthy in the hopes of becoming a possible transplant candidate.
After a few months of dialysis, my nephrologist recommended testing to see if I qualified for the transplant list. When I asked why I had to wait until this time to be tested, I was told “that was the process.” First you do dialysis, and then you move on to the transplant.
The facility and staff at the transplant center were excellent. I was free to ask questions, and they gave answers in a way I understood. They provided information on the transplant procedure, kidney disease and life after the transplant. 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 obedience were over when I picked up the transplant list. I had a voice in the future of my care. I brought it back, and my nephrologist was not glad I found my voice.
After a crisis with my blood pressure, my daughter wanted to donate her kidney to me, even though I did not want her to do it. She was deemed ineligible, but her housemate and sister in college came to the fore and were 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 change my care without consulting with the transplant center. His “according to the numbers and books” style was not for me.
I have a voice, and now I use it so that others’ journeys will not be so rough.
More information about CKD
In the United States, it is estimated that at least 37 million adults have CKD, and about 90 percent do not know they have it. One in three American adults is at risk for kidney disease.
The National Kidney Foundation (NKF) is the largest, most comprehensive, and long-lasting patient-centered organization dedicated to the awareness, prevention, and treatment of kidney disease in the United States. Visit www.kidney.org for more information on NKF.
Curtis Warfield is a senior quality analyst for the state of Indiana. Since receiving his kidney transplant in 2016, he gave back by raising awareness of both kidney disease and the need for organ donors, focusing on low-income people. He is a patient advocate and peer counselor, serves on several committees at the National Kidney Foundation and is an ambassador to several other national kidney and chronic disease organizations. He is married with four grown children and one grandchild.