How Advocating for Myself Helped Me Overcome a Tough Health Setback

“Alyssa, I’m afraid I’m stuck between a rock and a hard place,” were words I never wanted to hear a doctor say about my health. Until, unfortunately, it became my reality a couple of months ago.

For the second time in two weeks, I was lying on a hospital bed in the infusion center feeling equally scared and frustrated. A few months earlier, a blood test showed my iron levels were close to zero. I tried an oral supplement, but that eventually clogged my nasojejunal feeding tube, which resulted in a trip to the emergency room. This meant iron infusions were my last option. There was no way out of it. I had to get them.

As it turned out, my first infusion went horribly wrong, leading to vomiting, diarrhea, fever, trouble breathing, and dark brown urine, which happened minutes after the infusion — a rarity they had never seen. So in the days leading up to my next infusion, I stayed in constant communication with my gastroenterology (GI) team that prescribed it. I advocated for a smaller dose, asked for preventive medications to be prescribed beforehand, and kept an open dialogue with the team.

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The last place I wanted to be

In hindsight, the side effects from the first infusion likely were due to a shock in my system. My body had been deprived of iron for so long that such a large infusion may have triggered a response. This was my own speculation, as we didn’t exactly know why my body did what it did. But having not been aware of what could have gone wrong at the time, I was petrified by how sick I actually got.

Needless to say, I entered the room for my next infusion and was transferred onto the bed. It was the last place I wanted to be. Afraid to relive that horrible reaction, I was angry at my body for always making things difficult. And I was worried about what would happen next if my body couldn’t handle the infusions. I voiced my concerns once more and asked the nurse to confirm the new plan with the GI team. When she returned to my room, she had my doctor on the phone.

The lengthy conversation came down to one simple statement: She was stuck between a rock and a hard place. The fact of the matter was that I needed the infusions regardless of their outcome. But her long explanation comforted me. They had a better plan in place. They were more equipped this time knowing what they knew. In a worst-case scenario situation, if I got sick again, I’d be admitted to the hospital for the remainder of my infusions to be closely monitored. I winced at the thought but knew it was the right path to take.

After two hours of deliberation, we went forth with the second infusion. One small IV slowly delivered the iron to my veins. With every drop, I felt more doubt. But my doubt turned into relief as I went to bed that night absolutely unscathed.

To my surprise, the following three infusions went even more smoothly. In fact, I started to feel the benefits almost instantaneously after each one. It’s as though that awful first experience never happened.

I’m proud of myself for advocating early on in the infusion journey. And I’m thankful to have doctors who listen. Today, I share my experiences with you to encourage you to be your own advocate, voice your concerns when it matters, and continue to move forward, even when it’s hard. You can always fight back harder.

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.