My journey of waiting for a kidney transplant was 5 years filled with many doctor visits and revelations along the way.
My primary care doctor always checked my kidney function during routine visits because of the medications I took. During those visits, she recommended I see a nephrologist because there was a significant amount of protein in my urine.
The next day, I made an appointment with the nephrologist. I had to give a urine sample during my routine visits to the nephrologist, but my doctor also suggested a kidney biopsy to check for any scarring.
I was very nervous about the biopsy, but my husband was by my side through the entire journey. After a few days, I received a call from the doctor to let me know that I had chronic kidney disease.
My specific diagnosis was focal segmental glomerulosclerosis (FSGS). Through my research, I learned that this disease impacts Black communities the hardest.
After I moved to Chicago, my doctor recommended a second kidney biopsy. This time, the doctor called and told me I would need to go on dialysis and start the process of getting onto a transplant list.
I made an appointment at the Northwestern Medical Transplant Center in Chicago and attended all the sessions. I completed the necessary testing, including an EKG, a treadmill stress test, counseling, and a physiological test.
Then, I had to wait on the test results to see if I was accepted. It felt like waiting to get accepted to college when I was a senior in high school.
I started dialysis a few months later, going for 4-hour sessions every Monday, Wednesday, and Friday. I’d never had anxiety until this point in my life, but now I needed medication to treat it.
One day, I received a letter from the transplant center, informing me that I had been waitlisted. I was overcome with emotions. The transplant center recommended that I get on waitlists at as many centers as possible. The average wait time for a kidney transplant was about 5 to 7 years in Illinois, so I also applied to centers in Milwaukee and Atlanta.
Thankfully, I was placed on all of their waitlists. I had a lot of support from family and friends who offered to help me during the recovery process in any city where I was accepted.
Most people think that when you’re waiting for a transplant, you’re just sitting there, thinking about it all the time. And for some people, I believe it does weigh heavily on their minds. For me, this was far from the truth.
To keep my sanity, I had to stay as active as possible. I made up my mind not to get excited every time my phone would ring with area code 312, 414, or 404.
My husband and I traveled during the waiting period to New York, Nashville, Tulsa, Dallas, and Houston. We tried to have fun before returning to our brownstone to rest and wait.
When the bad days hit, I had to learn how to adjust. There were days I didn’t want to get out of bed. Dialysis was very draining on me — mentally and physically. On these days I felt like giving up, and many days I cried. Some days, my husband was called to the dialysis center to sit with me and hold my hands.
One evening I came home after dialysis, tired as usual, and fell asleep on the couch. The phone rang, and I saw it was Northwestern. I answered, and the voice on the other end said, “Mr. Phillips, we have a possible kidney. It is currently going through testing.”
I dropped the phone and started crying. I did not believe what I was hearing. I picked up the phone and apologized. I went into the room where my husband was sleeping and jumped on the bed like a big kid. I kept saying, “Wake up, wake up! Northwestern has a kidney for me!”
The nurse repeated the news and told us we would get a call the next day when everything had been confirmed. My husband and I hugged each other, both crying and in disbelief.
About 15 minutes later, the nurse called back and said, “We need you to come to the hospital right now.” I had my husband contact my parents with the news. As usual, my mom started praying for me.
I checked in at the emergency room and was taken to a room. They gave me a gown and started checking all my vital signs and doing labs. The waiting game was only a matter of hours now.
I finally got the call that everything was good to go. I had my last dialysis treatment that morning. I kept saying to myself, “Michael, it is time to move forward.” An old negro spiritual that resonates with me came to mind: “Like a tree planted by the water, I shall not be moved.”
I spent 2019 physically recovering from the surgery and 2020 mentally recovering. However, no one could see what the future held.
My husband, my son, and I all contracted COVID-19 in early March 2020 and have since recovered. Sadly, I lost my prayer warrior, my beautiful mother, to breast cancer. I lost several other family members to COVID-19 and other illnesses. The difficulties of life don’t stop just because you need — or have finally received — a transplant.
On January 5, 2021, we celebrated the second anniversary of my kidney transplant.
My advice to those waiting for a transplant is: Keep a positive attitude and get involved in the kidney disease community if you need a boost of encouragement!
I dedicate this article to my parents, Leon and Barbara Phillips. Mom was my prayer warrior and biggest inspiration. May you forever rest in peace!
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.
After his experience as a kidney transplant patient, Michael D. Phillips joined the National Kidney Foundation in Illinois and became a passionate advocate, fighting for important kidney policies that impact many people across the country. He’s also a family man, currently living in North Carolina with his amazing husband, three handsome sons, two beautiful daughters-in-law, and one energetic grandson who is the apple of his eye. He enjoys reading, traveling, and, most of all, meeting new people and sharing his story. Check out his blogs at https://michaeldphillipsblog.WordPress.com and https://nkfadvocacy.blog/2020/05/26/my-experience-with-covid-as-a-kidney-patient/.