Chronic kidney disease and my journey as a two-time kidney transplant recipient
By Eric Hickman, Associate Clinical Data Manager
I’d like to introduce you to Cindy, my kidney transplant. Named after the nurse who tended to me in the hospital, Cindy has been with me since 2007. I tell people that Cindy calls the shots—and I work hard to manage my health, stay connected with my healthcare providers and make sure that she stays happy. It’s not easy, but I’m grateful that I have a functioning kidney, and that’s why I’m sharing my chronic kidney disease (CKD) journey to help both patients and their providers.
Going from diagnosis to denial to dialysis
I didn’t always pay close attention to the health of my kidneys. In fact, when I was first told about my CKD diagnosis, I pretty much dismissed it. I knew what had happened and what was about to happen, but I didn't want to accept it.
I didn’t fit the standard risk profile for CKD. I didn’t have diabetes, hypertension or any family history of kidney disease. Yet my diagnosis wasn’t a complete surprise. When I was just eight years old, I was diagnosed with congenital hydronephrosis with secondary obstructive uropathy, meaning that my urine wasn’t passing through properly. Instead, it was bouncing back up, eating away at my kidneys’ filtration systems. I had nephrostomy tubes installed to address the condition, which were eventually replaced with permanent valves through surgeries in high school and college.
Life moved on and it wasn’t until I was 33 that I started to experience weight loss, lack of appetite and insomnia. After six months, I was feeling terrible, dropping from 220 pounds to 160 pounds. I saw my primary care provider who found that my creatinine levels were around 8 mg/dL (the normal range is around 0.7–1.2 mg/dL). She immediately referred me to a nephrologist but warned me that my kidneys had either failed or were failing, preparing me for the news that I would likely be on dialysis soon.
Once I received my official diagnosis of CKD from the nephrologist, I experienced a whirlwind of emotions ranging from denial, anger, hurt and sadness. I wish I’d followed up with my care team to start dialysis right after my diagnosis, but I didn’t.
While I was in denial about my diagnosis, I would often spend my free time going out to the boardwalk in Wilmington, NC, just looking out over the ocean. One day, as I was sitting out there, reflecting on the emotions running through me, my situation became very clear to me.
“It’s simple,” I thought. “I either dialyze or I die.”
Taking control of my health
From that point on, my attitude changed, and I became proactive about my health. After I started hemodialysis three times a week with the full support of my care team, everything started falling into place. I felt better, my appetite picked up and I was able to sleep through the night.
While dialyzing more than 10 hours a week is still a lot of time, I found that the dialysis center staff and fellow patients helped me pass the time. My manager even arranged for a company laptop so I could get some work done while I was dialyzed, instead of working long days to make up my hours. That was a huge blessing.
Sharing my CKD journey to help others
About two years after I first started dialysis, I received my first transplant, who was named Sam by my mother. Sam was a good kidney, but not a great kidney in terms of the match. Placed in my right abdominal cavity, Sam lasted six years until my creatinine levels started going back up, indicating that Sam was losing his abilities. I then went back on dialysis for five years until I received my current transplant, Cindy, who resides in my left abdominal cavity, sitting just across from Sam.
Throughout this journey of living with CKD and undergoing two kidney transplants, talking about my health is something I’ve never shied away from. I’ve also gained a deep understanding of diagnostic test results as a former Labcorp customer service representative, along with 24 years of experience working with clinical data as part of the drug development process.
My friends, neighbors and family members know they can come talk to me to get my opinions and advice. But I never knew that working for Labcorp would also lead to an opportunity to share my story with a wider audience. Based on my personal knowledge of kidney disease, here’s my advice to patients and providers:
- Don’t put off testing: If you are at high risk for developing kidney disease, you should see a physician, ask for testing and pay attention to what they're saying. Kidney disease isn’t something you can put off. If left unattended, your condition can worsen quickly. If it’s caught earlier, the disease progression can be slowed or even stopped.
- Recognize the value of your care team: I have been extremely blessed with caring providers who openly and honestly discuss their concerns, hopes and expectations. I currently work with a primary care provider and three specialists—a cardiologist, a urologist and a nephrologist—and they're in constant contact. For example, any time one wants to make a change to my medication, they reach out to the other three physicians. They also ask me for my feedback in each visit, which I believe is essential for our communication and trust as part of my care.
- Research and ask questions: Talk with your provider to get an idea of what they're looking for with testing and treatments. As a patient, you can also do some research online to help you better understand your condition and write out questions to ask your provider.
- Understand your test results: I like using online platforms where I can access my test results and send messages to my care team. For example, if I see that an analyte is too low in my test results, I'll reach out to the provider and ask, “Should I be concerned?” This helps me stay on top of my health and enables ongoing communication with my providers.
Looking ahead, I’ll continue to live my life. I’m taking the necessary COVID-19 precautions as an immunocompromised person, but I am still making time to exercise, take walks and safely hang out with my friends and family. But I know that even with my transplant Cindy, I am living with Stage 5 CKD. My transplant isn’t a cure—it’s just another form of treatment. If the transplant fails, I will end up going back on dialysis. Until then, I’m going to keep taking care of Cindy, staying up top of my health and sharing my story.