Bringing Awareness to the Challenges and Successes of Living With SMA
SMA Awareness Month is coming up in August. The question for me is, what’s the best way to raise awareness about this disease? My thoughts are that it is best to share that sometimes life can get a little dark for those of us with SMA.
Over the past year and a half, I’ve written columns about psychological healing, forgiveness, and trying not to judge others. All of these topics are important both for people who have SMA and those who don’t. However, the following true story will be a bit more personal and edgy. Yet it still has a positive ending — after all, you can’t have the light of hope without a bit of darkness.
On July 11 at 4 a.m., my mom, my nurse, and I headed to the hospital in the dark of night. The roads were eerily empty as destiny pulled us closer to my appointment. After two cancellations, the day finally had arrived for me to have surgery to remove kidney stones.
Apparently, having a procedure to remove kidney stones is common with SMA. So why was I so worried? As I’ve explained before, I had hundreds of stones in me. I found out later that there were so many stones that they spanned all the way from my kidney to my bladder.
This extreme situation required a procedure that was more invasive and risky called percutaneous nephrolithotomy. Instead of inserting a tube through my groin to pull out the stones, doctors would have to go in through my back. The incision to guide the tube through my back would be very small, but the risks include bleeding and other dangerous complications.
It had to be done, though, to stop the enormous pain I was in. I had been feeling fine for months, but two weeks before the surgery, the pain from the stones came back with a vengeance. I was miserable, and my usual go-to meds, Tylenol and ibuprofen, weren’t cutting it. I’m not ashamed to say that I had to fall back on narcotics prescribed by a doctor to achieve pain relief.
All of this made me more aware. From now on, I will be more empathetic toward my fellow SMA colleagues when they are facing the same painful situation.
Think I’ve been graphic enough? Buckle your seatbelt, because things are about to get worse.
Nine days before surgery, just as we got the pain to subside, something else happened that’s common for people with SMA: I got a bad respiratory infection. I usually go most of the day breathing on my own without needing my ventilator. For about two days, though, if I tried to come off the ventilator for just a few minutes, I would struggle to breathe. During emergencies, I would also get a headache due to my blood oxygen level dropping dangerously low. This would force my nurse to immediately put me back on the ventilator to help me breathe.
We all knew that I certainly couldn’t have surgery if I was sick. This fact prompted a mad dash to get me better quickly. The Vest treatment, in which a machine delivers mechanical percussion to my chest, was used on me three hours per day. I normally use it only one or two hours per day.
By God’s grace, it worked! Using the Vest percussion treatment helped to break up most of the fluid in my lungs. The day before my surgery, I was feeling 93% better. Although the trip to the hospital was worrisome, the surgery went well. The top-notch surgical team was able to remove 85% of my stones. Without a doubt, this drastically reduced my pain.
By the way, another appointment will be scheduled in the future to remove the few remaining stones. It will be a much simpler and less risky procedure.
Miraculously, many things went according to plan. The surgery didn’t cause any unforeseen complications with my kidneys. I came home the next day as we all had hoped I would.
But when you have a medically complex disease like SMA, it can be hard for things to go smoothly. I returned home with fluid in my lungs again. The original respiratory infection had rebounded. I immediately needed my ventilator to help me breathe again, along with three hours of Vest treatments.
The good news is that as I write this, my breathing is a lot better, thankfully.
My life has been a roller coaster recently. Be aware, though: This is how SMA is at times. It doesn’t mean that I have any less of a positive outlook. It just helps me — and all of you — enjoy those happy moments all the more. In fact, I have many more joyful moments than scary ones. That’s what I will continue to bring to you in my next column.
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.