Experiencing Lupus Nephritis and Kidney Failure

I’ve been living with a condition that has challenged my kidneys for so many years. I was diagnosed with lupus nephritis in 1995 and went through rigorous treatments just to sustain kidney function. In addition to lupus nephritis, I also was diagnosed with SLE, a form of lupus that affects body tissues and organs.

With other organ failures due to SLE, my kidneys stayed stable with the addition of medications and therapies. Through the years, my nephrologist paid close attention to my kidney functions, my GFR and creatinine levels, which measured how well the kidneys were removing waste from my blood.

As time went on, my kidney function started declining and it was inevitable that I was going to go into kidney failure and would have to start dialysis.

Dialysis and transplant

I enrolled in the dialysis training program just to prepare myself if the worst happened. I got a chance to know the different options of dialysis procedures and I had a pretty good idea which direction I was to go if and when I was ready for dialysis.

In 2011, my kidneys failed and I was in need of emergency dialysis. Peritoneal dialysis was my choice of dialysis because of the convenience and it gave me the freedom to be more flexible with the process. The best part was I was able to do it at night in the comfort of my own home.

For the next 14 months, I performed dialysis through the peritoneal catheter and everything went smoothly. Then came Father’s Day 2012, when I was surprised by my younger brother who announced he was going to bless me with his kidney. I was so happy knowing I had another chance at life. The kidney transplant took place the following February in 2013 and was a success.

Starting advocacy

In addition to slowing down my lupus aggression with a clinical trial, and having the kidney transplant, it literally made me feel like I was a brand new person. I felt energetic, athletic and strong, feelings I hadn't felt in years. Although a brain disease in 2019 retired me medically from work, I started advocating for lupus and men’s mental health and saw a new direction my life was taking.

In 2022, I was asked to join another lupus organization to help with a campaign in Africa, Make Lupus Visible. We were to meet with lupus organizations in Tanzania, local politicians and speak about lupus at a town meeting. Then the bonus of the trip was to climb Mt. Kilimanjaro.

H.A.P.E

During the climb, I got up to about 17,000 feet on the mountain when unfortunately my lungs failed. I was told I had H.A.P.E (Height Altitude Pulmonary Edema). I felt like the fluid building up in my lungs was causing me to drown. The medical physician that was part of our team had made the decision that I should not continue. I sadly agreed.

I was carried off the mountain and was brought back to our resort. I was in a lot of pain and felt sick for the next week until we flew home back to the U.S.

Kidney failure

When I got home, my fiancée noticed how sick I was and immediately took me to the emergency room. I thought I was only being treated for lung failure, but shockingly they told me they're treating me for kidney failure as well. I was devastated! My kidneys were doing well for so long.

I've been down this road before so my option was to do peritoneal dialysis again. Unfortunately, after a month of dialysis, the membrane in my peritoneal failed. I had a problem with failing access ports. Over the course of 8 months, 8 vascular ports, and 2 fistulas failed. Finally the last fistula in my left bicep has been working accordingly. I do home hemo dialysis, where I do the dialysis myself at home with no nurse or clinic involvement.

This is convenient for me as I can be in the comfort of my home and continue to run my nonprofit. Due to my condition, I’m doing dialysis 6 days a week, for about 4 hours a day.

Empowering others with lupus nephritis

My journey is not just about survival; it’s about thriving in the face of adversity. My advocacy work has earned numerous awards, I've held speaking engagements all over the U.S., and received invitations to symposiums and gala events.

I shed light and comfort about the realities of living with lupus nephritis. I empower everyone to navigate their health challenges with courage and support.