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Adventures in Travel with LEMS, Part 3
In Part 2, I told you of my failure at staying on schedule with my LEMS medications while flying. It’s happened before, and I just don’t seem to learn from past experiences.
The morning after missing doses of Firdapse and Mestinon the previous day, I got up, showered, dressed, and headed down for the day. I was happy and had a wonderful breakfast chatting with friends. It was here I noticed the problem. My ‘LEMS voice’ was on full display. When my LEMS is flaring, the ‘LEMS voice’ appears as reedy, raspy, breathy speech. It not only sounds bad, but it sounded like my vocal cords were about to seize up and cease working. I excused myself and went back up to my room.
Once there, I realized I hadn’t taken any of my meds that morning. No LEMS meds, nor any others. Again, what the heck! Best I can figure it’s just being off routine. I quickly took all my morning meds, including my full dose of Firdapse and Mestinon. It took about an hour and a half, but my voice returned to normal. This is what happens when, beginning the previous day of travel, I got off my dosing schedule for essential LEMS meds. I think, when we normally stay on routine every day, we forget how quickly things can go south if we don’t adhere to our medication schedule.
After starting out my day with the LEMS voice, I had a great day. That only lasted until the evening. Coming back from dinner at a restaurant, I took a careless step and fell. Falls are a dreaded event, and LEMS patients can be especially prone. In my case, my LEMS had nothing to do with my fall, but it easily could have.
It was a hard fall, but I picked myself up relatively quickly, assisted by a fellow LEMS friend, and brushed myself off. I felt embarrassed doing this witnessed by my friends. After getting to my room, a friend brought some ice up so I could ice my right side where I hit. Honestly, it felt a bit off, but it didn’t hurt that much. The next morning I got up, had breakfast, and departed on time back to DFW. It was a long, three-and-a-half-hour flight, but all went well.For the next three days, my side became more painful and uncomfortable. It was hurting so much I couldn’t make a good cough. I can’t stress, having been a Registered Respiratory Therapist (RRT), that making a good cough is very important. After the third day home I had my sister take me to the VA ER (they have no urgent care facilities), and had a CT scan done. The results revealed I had two displaced fractures at ribs 9 and 10. No wonder I developed so much pain and discomfort.
Lest you are concerned, the recovery has gone well and I’m feeling much better now. The important lesson I want to convey as a LEMS patient myself is you never know what could happen when you’re out traveling far from home. I packed several days of extra Firdapse, Mestinon, and my diabetes supplies, all essential for my daily living. There’s every chance that a fall or other accident could unexpectedly send you to a local ER or hospital and an unplanned extended stay away from home. With LEMS it’s critical to plan ahead and be ready for contingencies from unexpected events. I learned my lesson for real.
If you have travel tips you use when out on an adventure, please share them in the comments below. Have you dealt with falls?
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