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The Quinnipiac Chronicle

The Student News Site of Quinnipiac University

The Quinnipiac Chronicle

National Kidney Month: The importance of kidney advocacy

From the perspective of a kidney disease patient
Peyton McKenzie

March is National Kidney Month. For the past three years, I’ve advocated for patients with kidney disease, and you should too.

My journey into advocacy started when I received a diagnosis that would change my life.

In 2021, I discovered that I was part of the one in seven Americans who are impacted by a kidney disease. I spent my childhood feeling weaker than other kids, and wasn’t able to keep up physically with them. I was 16 years old when I was diagnosed with primary membranous nephropathy, a type of chronic kidney disease. I had been suffering from it my whole life but didn’t know it, because nobody caught it.

It was caught randomly and, in a way, miraculously. I simply just wanted to join my local fire department. I was told the process was quick, I just needed a physical. Nobody expected the doctors to find anything wrong with me. Yet, they did.  My lab work was all over the place, since I suffered from proteinuria, or elevated levels of protein in the urine.

I went to Connecticut Children’s Medical Center, where my first doctor told me, “We have read all about you.” I was popular in the nephrology department for all the wrong reasons. I was a medical mystery.

There, my doctor explained the list of possibilities, lupus being one of them. I didn’t know anything about what he was talking about, except that lupus is what Selena Gomez has and she had to get a transplant. I was afraid that could be me.

The next step was to get a biopsy. That part was easy — the doctors put me to sleep and I took the most amazing nap. The issues started when I had to stay the night in the hospital. I had to stay on my back, and as a stomach sleeper, I knew I was in for a very uncomfortable night. I couldn’t release pressure off of my back for 24 hours to stop any bleeding from the biopsy site.

As a high school junior, I struggled. A lot. When I got back to school after my biopsy, I couldn’t participate in gym class. My physical education teachers gave me looks, as if I was making excuses.

That was the first time I realized people are less likely to care about an illness if it’s not visible.

The second time I realized this was when I had to undergo treatments. I had to spend two days in the hospital, once a week for a month. I have to do this every year, but the time of the year depends on what my lab work looks like.

Just when I thought the most stressful part was over, life got even harder. I found out that I was allergic to my own medicine, Rituximab. I had to be given constant doses of Benadryl through an I.V. So, I slept through two days a week for a month, while being mentally and physically exhausted the rest of the time.

In 2021, Associate Opinion Editor Lillian Curtin was diagnosed with a rare form of kidney disease. (Lillian Curtin)

If I was in my teachers’ position, I would’ve understood that there was no possible way for me to do all of my school work while in the hospital. Yet, they didn’t. They were snarky with me when I couldn’t get my work done, and wouldn’t give me extensions.

I had to teach myself my schoolwork because they just expected me to know on my own. Of course, this wasn’t the case for all of my classes, but it was enough to make my junior year even more stressful.

I don’t want anyone else to go through that. I am an advocate because I wasn’t diagnosed quickly enough. I had gotten physicals before, but no one caught my disease until I moved to an area with better medical care. I don’t blame the doctors in my hometown, I blame a lack of education about the symptoms.

I am an advocate because I wasn’t approved for treatments by my insurance provider. Since I was a child, my treatment was considered “experimental.” Of all children with nephrotic syndrome, only 1%-5% have PMN, per Kidney International Reports.

Thankfully, after weeks of fighting, I was approved. But what if I wasn’t? What if I didn’t have access to the medicine I needed? Spreading awareness about treatments and the disease could help children get the treatment that they desperately need.

Finally, I am an advocate because I look back, and I’m mad about how my teachers treated me when I missed class for appointments, treatments and recovery. Just because you can’t see my illness, doesn’t mean it’s not there.

Kidney disease is known as the “silent killer” because it can progress without you even having any symptoms.

If diagnosed, you need to act fast. It’s important to advocate for resources and awareness so that when treatment is needed, it’s available, without judgment or setbacks.

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About the Contributors
Lillian Curtin
Lillian Curtin, Opinion Editor
Peyton McKenzie
Peyton McKenzie, Creative Director

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