What LGMD and a lengthy hospitalization reminded me about life

I have lived with limb-girdle muscular dystrophy (LGMD) type 2E/R4 for more than 40 years. Initially, apart from stretching and visiting a neuromuscular clinic twice a year, I didn’t think much about managing my symptom progression.

So much has changed.

In January 2024, I was forced to put my entire life on hold and be a full-time patient. Since then, my whole worldview has changed.

Due to my weakening heart muscle and an allergic reaction to a prescription medication, I experienced severe tachycardia and had to be airlifted to a Boston-area hospital.

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The next several days were touch and go as I was put on a ventilator, given several IVs, and drifted in and out of consciousness. The intensive care unit (ICU) team wasn’t sure I’d live. If I did, my recovery would be difficult because my LGMD was so advanced. In addition to my heart, my lungs became too weak to expel phlegm. Pneumonia and a partially collapsed left lung were added to my chart.

Thankfully, the immediate crisis abated, and I was left to recover in the ICU until I could be transferred to a rehabilitation hospital. I spent a little more than three weeks in my small hospital room. Too weak to move, I watched television, listened to audiobooks, welcomed the company of family and close friends, and wished I could feel the outside air and sun on my face.

My world stopped — no work, no paying attention to my van, bills, home, or email. My life shrank to one simple goal: becoming strong enough to breathe on my own again. My wife brought photos of my children into my hospital room, taped them to the wall, and said, “This is who you’re fighting for.” At night, in the darkness, I would look at each photo and focus on breathing in and out for each of my boys and my wife.

The shrinking of my existence to one room and to breathing took a mental toll on me. In the ICU, I requested and received psychological services. I was told that the trauma of being airlifted, being close to death, and remaining in one small room for more than three weeks can trigger symptoms akin to post-traumatic stress disorder. At that point, it felt like the only part of me still functioning was my brain.

Making strides toward recovery

On Day 24 of my ordeal, I was deemed well enough to be transferred by ground ambulance to a Boston-area rehabilitation hospital. There, I spent another three weeks regaining strength, range of motion, and the ability to swallow food. This hospital room was a bit bigger, and it came with a huge perk: With help, I was able to use my power wheelchair during the day, leave my room, and visit a common area with a table and a sunny window.

It was February and brutally cold. I asked if I could go outside for a few moments, but I was told that my lungs weren’t quite ready for that yet. Still, seeing the sunny window, the clouds, and the sky was more than enough. The nurses trained my wife to manage my tracheostomy so I could leave the hospital floor and travel downstairs to the cafeteria. To me, it was a trip to a five-star restaurant, and I smiled at everyone I passed in the hall.

With time and support, I fully recovered, my trach was removed, and in late February, I went home.

I learned that the blue sky and clouds are gorgeous. I learned that outside air smells marvelous. I learned that nature, in the form of a flower, tree, bush, or body of water, is an amazing creation on our Earth.

Being a full-time patient rekindled my wonder, a feeling I hadn’t experienced since I was a small child. When I was busy managing my condition, paying bills, and getting things done each day, I had forgotten that simply breathing and being alive is a wonderful thing.

It took LGMD to teach me all those things again.

Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.