How My Kidney Disease Journey Began

People often ask me why I have kidney disease. Most assume it came from diabetes because, for many years, kidney disease was commonly associated with diabetes later in life. But that was not my story. I was only 41 when I was diagnosed with chronic kidney disease, also known as CKD.

It all started with a strange growth on my eyeball.

At the time, we were living in Las Vegas. One day, this mysterious lump appeared on my eye. I ignored it for a while because I had dealt with styes before, and I thought it would eventually go away. But after a few months, I decided to take a closer look in the mirror. That is when I realized the lump was actually on my eyeball, not under my eyelid where a stye would normally be.

I made an appointment with an eye doctor, thinking he would prescribe antibiotic drops and send me on my way. Instead, I was shocked when he told me he did not know what it was. Then he said he was referring me to an ocular oncologist in San Francisco and that I needed to make the appointment as soon as possible.

I was completely taken aback. An oncologist? And in San Francisco? That was a long way from Las Vegas. I later learned there are very few ocular oncologists in the country, and San Francisco was the closest option for us.

After taking some time to process the news, we traveled to San Francisco right after New Year’s. We spent a few days there, and I had an eye ultrasound. The doctor prescribed steroids to see if the mass would go away. Then we went back home and waited about two weeks.

Unfortunately, the mass was still there. I was asked to take photos of my eye and send them to the doctor. After reviewing them, he told me I would need surgery to remove the mass so it could be sent to pathology and studied.

We went back to San Francisco in February 2011, and thankfully, the surgery was successful. My recovery went well, and the mass was sent to a pathologist. That is when I first heard the name Wegener’s Granulomatosis. Apparently, that was my diagnosis.

In July 2011, I was referred to a rheumatologist and went through many tests to see if Wegener’s had affected any of my organs, including my lungs, kidneys, sinuses, and skin. At that time, none of my organs were affected. Everything looked healthy.

We were also preparing to move back to Central Florida that August, so the rheumatologist decided not to start me on medication right away. The plan was for me to find a new rheumatologist once we got settled in Florida.

Unfortunately, after the cross-country move, I did not start treatment quickly enough.

By February 2012, I had been feeling fine. Then suddenly, I became extremely nauseous and deeply fatigued. It was a level of fatigue I had never experienced before. One Sunday, we went to church and came home around 11:30 a.m. I got into bed and could not get back up.

Later that night, around 10 p.m., I started spitting up mouthfuls of red blood. It was terrifying.

I went to the emergency room and found out I was having a flare-up of Wegener’s Granulomatosis. My kidneys were failing, and they were functioning at only 18%. My lungs also had a large nodule, which was the reason I was bleeding so heavily from my mouth.

The doctors started emergency treatment right away. That treatment included a 18 days in the hospital, a very high doses of prednisone, 60 mg per day, along with oral chemotherapy. I stayed on that treatment for about eight months.

Thankfully, my lungs completely recovered. My kidney function improved to 43% after treatment, but my kidneys would never be as healthy as they were before the flare-up. Over the years, my kidney function has slowly declined, eventually leading to complete kidney failure.

And that is where I am now. I need a kidney transplant, or I will have to start dialysis.

It took 14 years for my kidneys to fail. My experience with COVID also sped up the process. Still, I know I am blessed. Some people do not recover from Wegener’s flare-ups and need dialysis immediately.

Wegener’s Granulomatosis is a vascular disease. It affects the blood vessels and can reduce blood flow to the organs. When organs do not receive the blood supply they need, they can become severely damaged or even fail.

In recent years, the name Wegener’s Granulomatosis has changed to Granulomatosis with Polyangiitis, better known as GPA.

I encourage you to learn more about GPA and become familiar with the signs and symptoms. When I was diagnosed 15 years ago, it was considered rare, and many doctors were not familiar with it. Unfortunately, it does not seem so rare anymore. I now see many people, including children, suffering from this disease.

For more information about this vascular disease, click here.