A few years ago, I was going through a really rough time, health-wise. Because of my SMA, I’ve always weighed less than a normal person would – well under 100 pounds. But after graduating college and starting to work, I somehow gradually lost around 20 pounds. When you only weigh around 60 pounds to start with, 20 pounds is a lot. I wasn’t trying to lose weight, and I honestly didn’t even realize that it was happening.
Weight and metabolism are tricky for people with SMA. My body can go into fasting/starvation mode really quickly, and I don’t have much of a fat reserve. So if I go too long without eating, my body will start to break down my own muscles to try to get the energy that it needs. So when I was down to weighing about 40 pounds, everyday life got really, really hard.
I basically couldn’t eat enough to get enough energy to get through a normal day. I was burning so much energy just breathing that I couldn’t get a good breath when I was sitting up – it would be hard for me to breathe, and my heart would start racing. I was exhausted all the time. I honestly didn’t have much of a life at that point, and it was not fun. But it took a while to figure out that my weight was the problem – I don’t get weighed often, so it was hard to pin down what the issue was.
Once we knew it was my weight loss that was the problem, I tried really hard to gain the weight back. I had so many chocolate flavored Ensures every single day, and ate as many of the high calorie foods covered in butter as I possibly could. I gained maybe 3 or 5 pounds back, but it wasn’t nearly enough to get me back to a healthy weight.
The whole time I was trying to gain weight, I knew that if I couldn’t, I’d have to get a feeding tube. I really, really wanted to avoid this. I hate going under anesthesia and having surgery, and I didn’t love the idea of having a button sticking out of my stomach for the rest of my life. I was terrified, but I knew that I was out of options. So surgery was scheduled for early November, almost exactly four years ago to the day. This is a picture of myself that I took the night before surgery – the quality isn’t great (I had no idea I’d ever share it!), and even though I’m wearing really baggy, loose clothes, you can still see how thin I am.
It’s still crazy to me how quickly the feeding tube helped me. I was already feeling better in the first few days afterwards. I had energy again, and my heart didn’t start racing if I sat up for too long. I was incredibly lucky in that I didn’t have any side effects (like nausea) from the feeding tube, and my body adjusted really quickly.
Now, I use the feeding tube overnight, and eat “normally” during the day. Knowing that I can get in extra calories overnight takes away from the constant stress of trying to eat enough that I felt while I was trying to gain weight. It can be a little annoying sometimes – not all of my old clothes work with the feeding tube, and when I go to bed, I have to plan ahead and know what time I’m going to get up so I can do the math to get the right amount in overnight. But it honestly gave me my life back, and I am so grateful for that.