An excerpt from The Healthy Kidney Handbook: A Comprehensive Guide to Manage Hypertension, Control Stress, and Prevent Renal Failure, Kidney Disease, and More.

A good friend and neighbor of mine is a kidney transplant survivor, and I wanted to thoughtfully document her thoughts on different parts of her journey. She is currently a married, African American woman, mother of a teenage son, in her forties, and works full time in a demanding role.

What do you remember about your time leading up to needing a transplant?

The cause of my end-stage renal disease was polycystic kidney disease (PKD), which is genetic. Of my grandfather’s six children, four had kidney disease and three had transplants, including my mother and two of my uncles; their oldest sister had PKD but passed away from an associated complication (cerebral hemorrhage). I wasn’t diagnosed until later, in 2010 about six months after my baby was born, when my doctor felt an abdominal mass on exam, and I almost immediately knew it was my kidney. We did an ultrasound, which confirmed the cysts, and we began our action plan. Thankfully, my kidney function was normal at that time. My primary care doctor referred me to a kidney doctor right off the bat to get a jump start on forming a relationship and staying on top of the disease. The first nephrologist didn’t work out well, so I talked to my mom’s nephrologist, who had transitioned from patient care to doing research, but he referred me to one of the practices with which he collaborated for research.

I started with once-a-year nephrologist visits, but when the early stages of ESRD began with increasing creatinine levels, the nephrologist and I, as the patient, worked together. I still had no symptoms at that time. Then, in 2014, my creatinine started increasing, and I began to have fatigue and feel exhausted all the time. At that point, we began talking about next steps. Our goal was to skip dialysis altogether and go straight to transplant, which I ultimately had in 2016. But before that, in 2015, I was referred to a surgical transplant team, took classes, and talked about donors. My brother thankfully decided to be my kidney donor, but because polycystic kidney disease is an autosomal dominant genetic process (meaning since our mom had the disease, we each had a 50 percent chance of having the disease), they needed to make sure he also didn’t have PKD. It was a long testing process for him, so in the meantime, as my kidney function worsened, I had to start doing home peritoneal dialysis and had the surgery to place the abdominal port. Nurses had to do a home visit to make sure my home was an appropriate and sterile environment, with training for two weeks. I had a good experience with it and had to do dialysis 10 to 12 hours a night and did that for three months. Once we found out my brother was a match, we scheduled our surgeries for June 2016.

What was that process like with having your brother as your kidney donor?

My brother was a single dad at the time, so we had a very serious conversation about how this would affect his health and his life, too. We are nine years apart and he’s the younger brother, so I was like his second mom his whole life. For him, there was no question that he would give me his kidney. So, I borrowed a kidney! We had surgery on the same day, but I’m not sure if we were in the same operating room or not, because I was sedated. Our mom was a nervous wreck with both of her babies on the table, but she had been through the same experience before with her own transplant. My mom’s donor was her sister in 1998. All those in her family who received transplants were from living donors, which is atypical. One of my uncles’ donors was a coworker, and my other uncle received a kidney from his stepdaughter. The whole family was there in the hospital when we had our surgeries. My brother was able to come home first, and I stayed in the hospital for three to four days to make sure I didn’t have organ rejection or other complications. Generally, the stay is longer for most patients, but I was very determined to get up and move around and show the nurses that I was motivated and feeling well enough to go home.

What was the post-transplant process like after surgery?

I started my oral post-transplant regimen shortly after my surgery, and I now take one immunosuppressant daily. In the past, steroids were usually also part of the process, but thankfully, I don’t have to take steroids. I have been able to avoid the side effects that can occur with steroids, like weight gain and infections. I also do IV infusions once a month, called belatacept (Nulojix), which can be very expensive. Thankfully, my insurance covers most of it.

What was the most challenging part of the transplant process?

Getting ready to have the conversation with your loved ones about having to have a transplant is extremely challenging. You have to manage both your and their emotions about it. Also, establishing the new normal during and after your transplant is difficult, particularly since part of my journey has been during the COVID-19 pandemic. My whole family had to mask for much longer than the mandates required to protect me from getting sick. My son, who was in middle school at the time, was more anxious (worried about me and feeling less socially engaged) and received occasional questions from his peers about why he was still masking. And my husband, who is also an educator, often had to explain that he was still masking for my safety. I still mask at work given my immunocompromised status, and we are all up to date with all of our vaccines. I’m even involved with a new RSV (respiratory syncytial virus) vaccine research study to help determine the dosing and effectiveness of the vaccine for immunocompromised patients.

Now that you’re eight years out from the surgery, how are you and your donor doing?

We’re both doing very well. I see my surgical transplant team now instead of my nephrologist, twice a year (once via telehealth, and once in person). I get my labs checked quarterly with my infusion, and I no longer have to have CT scans or imaging to monitor. I had an incisional hernia related to the transplant and had surgery recently to repair it; I had a hernia previously that was repaired when I had the surgery for the dialysis port. Having additional surgeries after your transplant is pretty typical for transplant patients, because of scar tissue and hernias that can occur afterward. When I had my transplant, they also removed the dialysis port and did an appendectomy, as well, to remove my appendix, just in case it would later become a problem. I have had a conversation with my teenage son, but we have decided against doing genetic testing for PKD at this point because there’s no cure or early treatment. For now, we just monitor his blood pressure and lab work to watch his kidneys. My words of wisdom for others going through this is to ask a lot of questions and don’t go through this alone. As a community, we (Black folks) sometimes keep things too private, but there is a lot of support out there. Share what you’re going through.

C. Nicole Swiner is a family physician. She is also a two-time best-selling author, blogger, speaker, wife, and mother. She was voted as one of the 10 best doctors in North Carolina in 2017 and is also affectionately known as the “Superwoman Complex” expert and has written two best-selling books on the topic. She loves taking care of the family as a whole: from the cradle to the grave. Her interests include minority health, women’s health, self-care, and entrepreneurship.