Setbacks and Progress

I had my first maintenance dose of Spinraza on February 5, and with that milestone I set some personal goals. See, I've learned that this treatment provides potential - potential for muscles to strengthen and rebuild - and I needed to start doing some serious work to live up to this potential. More stretching, more exercising, more intentional diet, more breathing... basically just moving and working out whatever I can. I kicked off this knew season with a little trip to Florida on Feb 8-14, to soak up some much-needed vitamin D and deep-breathe that salty sea air and digest as much seafood and fresh fruit as possible. Mission accomplished, I came home determined to get to work.

But five days later, on Feb 19, I woke up with a sore throat and hacking cough, and three days after that, I found myself in the ER, getting chest X-rays, blood work, IVs, and without much hesitation getting admitted with pneumonia. I felt weak, exhausted, dehydrated, congested, and discouraged.

Setbacks. That was the title that overwhelmed my mind for the four days I spent in the hospital, and to be honest, it's continued through some darker moments since I've returned home this week. Wheezing and coughing without much in the way of results and relief eventually burns a hole or two in the human spirit. It felt like I was wasting away, shriveling up, getting weaker at the time I should be getting stronger. I knew that taking Spinraza wasn't going to automatically make me immune to illness for the rest of my life, but it still made me disappointed to face my old enemy again so soon.

Progress. In my brighter moments of optimism and clarity, I have noticed some things that were different about this experience. I've been hospitalized for pneumonia many times throughout my life, but I believe this was the first time I was never put on oxygen support. The whole time I've been sick, my O2 saturation levels have been 96% or higher, with no outside assistance! The nurses told me this probably was a big factor in me being able to go home so soon - they didn't have to ween me off the oxygen. I was only in the hospital for four days - which is a noticeable improvement to the two-week stints I've had to endure in recent years. My hospital stay also did not include the rather uncomfortable measures of a bronchoscopy or nasopharyngeal suction, which have been necessary in the past. And the respiratory therapists utilized a High-Frequency Chest Wall Ossilation vest, which I've not been strong enough to handle in the past, but worked really well for me this time around. I have an idea that Spinraza has something to do with these remarkable bits of progress.

It's been over a week, and I'm still coughing, still fighting, still working toward recovery. But I'm doing better and getting stronger every day. Thankful for minimal setbacks and encouraging progress.