A Recent Hospital Visit Taught Me How to Self-advocate

On Thursday, Nov. 17, I went to bed with what I thought was a bad stomachache. It felt like someone was sticking a knife in my left flank.

Then I realized: This was undoubtedly a kidney stone. I’d had three others, and the pain was exactly the same. But this time, the pain didn’t go away, and I was left counting down the hours to when I could take another Tylenol. I knew something was different. Rather than coming in waves, the pain stayed the same.

Around 3 a.m. the next morning, I relented and asked my assistant to get me dressed and drive me to the emergency room (ER). It turned out to be the right decision as the stone was stuck, causing an infection. I had to have a surgical procedure to put a stent in my ureter to allow urine to flow through and stop the infection from spreading.

I’ve been to the hospital before, but this was the first time I was on my own, without my parents. I had to advocate for myself. My parents, who live nearby, were this week halfway across the world on vacation. With a rare condition like Duchenne muscular dystrophy, I had to ensure that doctors understood the disease and my unique needs. It was a scary moment, but also a valuable learning experience.

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The first and most important part was telling the ER nurses and doctors about Duchenne. Most people in the medical world know that Duchenne exists, but nothing much beyond that. And I wouldn’t expect them to, given that it’s a rare disease and they”ll probably never see another patient like me.

I told them about my muscle weakness and how I need help getting up to use the bathroom or transferring to a gurney. The charge nurse joked with me, “We’re used to lifting dead bodies out of cars. Your situation shouldn’t be a problem.” Even so, I explained the best places to grab me to lift me up.

I also wear a MyID Hive Medical ID Bracelet for situations like an ER visit. I was able to have doctors scan a QR code that led to a landing page with my medications and general information about Duchenne. I’m on a high dose of the steroid Emflaza (deflazacort), and missing a day can cause an acute adrenal crisis. I made sure I had the steroids I needed after realizing I’d be staying in the hospital for a few days.

The extra information helped me better communicate with the doctors. For example, I knew that certain anesthesia methods would be dangerous for me, but I didn’t know the specifics. I felt a lot more comfortable knowing the details were outlined in the MyID bracelet. A compound called succinylcholine is often used in surgery, but can have dangerous side effects (such as elevated potassium levels) for someone with Duchenne. The anesthesiologist immediately understood the situation and went through extra measures to ensure the operating room was wiped clean of it.

I also learned from this experience that I need to rely more on friends and family. I was a bit slow to ask for visitors. I didn’t have anyone with me when I went under for the operation, which probably wasn’t the smartest decision, looking back. But after some lectures from close friends, I realized it’s important to have someone else there who knows my condition and can advocate for me in case I can’t.

Thankfully, the procedure to put in the stent was a success, and I was released from the hospital that Sunday. And on Thanksgiving, I passed the 4 mm kidney stone that had been causing all these issues.

This time I was in the hospital for a low-risk surgery, but I never know what the future will hold. It was almost like a dry run for any future hospital visits (though I hope there are none). I need to selfishly take extra time with the doctors and explain my situation, wear my MyID bracelet, and have a list of close friends and family ready.

The reality is that many people, even in the medical field, don’t know about Duchenne. I was fortunate to be in a great hospital with smart doctors and caring nurses, but that may not be the case next time. Because of that reality, the onus is on us to quickly teach people about Duchenne so they can make the best medical decisions possible.

That’s the power of self-advocacy.

Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.