One morning in August 2013, I woke up with a pain unlike anything I had felt before. It was excruciating, relentless, and in my mind, totally unprovoked, as I hadn’t done anything bad to my body the night before and I wasn’t sick. The worst part: The pain was coming from my groin and abdominal area.

Kidney stones are pretty common among people with SMA, and they suck just as much as your grandfather says they do. The first time I dealt with stones was on that morning, right as I was about to start my sophomore year of college. As I sat on the toilet and the pain continued to intensify, my mom and I both freaked out a bit when we saw that my urine was a shade of red. The only thing that sprung to my mind? “Uh, why is there blood coming out of my wiener?”

After I saw my doctor that day and received confirmation of kidney stones, I was obviously perturbed. I thought that stones were something you didn’t have to deal with until you were at least in your 40s, and even then they weren’t something I ever wanted to experience after hearing horror stories about how to get rid of them. An operation that consisted of a radioactive blast to destroy the little suckers? No, thank you.

Fortunately, I was able to pass these stones on my own within a few days. It would be another few years, in December 2016, before I would encounter this lovely medical condition again, just a few days before I graduated from college. The pain was like a bonfire blazing inside my body, but at least it was familiar. My parents and I knew what the problem was, and this time we went straight to the ER.

To this day, I have not had to undergo surgery to remove kidney stones, and I intend to keep it that way. Yet after that ER visit in 2016, my parents and I decided that it would be in my best interests to start seeing a urologist. Before this, I didn’t even know what a urologist was. Initially, I just called the guy my “pee doctor.” I see enough specialists that I have to give them nicknames to remember exactly what they do. “Breath guru,” “nerve nut,” and “person who sticks the needle in during Spinraza injections” are easier for me to say than pulmonologist, neurologist, and radiologist.

I’m fortunate to have a urologist who has experience with other patients with SMA, and as such, I tend to trust his recommendations more than others in his field. When I went to see him a few days ago for an annual checkup and X-ray, the results came back saying I still have a small stone inside me that’s been sitting there for close to two years.

Whereas other urologists I had seen wanted to go straight to surgery, my current one understands that such an operation is pretty invasive for folks with SMA. Since my stone is so small and not in a spot that will cause me any pain, we both agreed to leave it alone for now and only treat it if it grew or moved. By doing an X-ray every time I see him, we can track the stone’s activity and look at how it affects my overall urinary system.

If you have SMA and are reading this, I get that adding one more medical specialist to your endless list of doctors to see can be a major inconvenience. I looked at my online Duke University Hospital account the other day when I left my urologist’s office and realized I had more upcoming appointments than I did unwatched titles in my Netflix queue. It’s exhausting to keep up with, but if it means staying healthy, then I’m willing to do the half-hour commute to Duke for physical therapy and doctor’s appointments.

And, hey, I’ll take seeing a “pee doctor” once a year and drinking more water on a daily basis over urinating blood any day.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.