This is Part 5 of my notes about my recent open heart surgery. To read what has come before use these links: Part 1 Part 2 Part 3 Part 4
I have an inherited disease that causes neuromuscular atrophy. The disease is called Charcot-Marie-Tooth disease (“CMT”), named after the three physicians who first described it: Drs. Jean-Martin Charcot and Pierre Marie (both from France) and Howard Henry Tooth (of the United Kingdom). CMT affects 133,000 people in the United States and roughly 3 million worldwide. CMT is a disease of the peripheral nerves that control muscles that can cause progressive loss of function and sensation in the hands, arms, legs, and feet. CMT is a form of inherited peripheral neuropathy.
In my case, CMT has made it so I cannot walk very far or stand very long. I use a cane. And I have a tendency to fall easily. Weeks before I had the open heart surgery I had sought out physical therapy because CMT has been affecting my mobility, and I didn’t want to surrender to a wheelchair. I was diagnosed with CMT when I was 40 years old, so it wasn’t a recent surprise and I am very aware of its progression.
After having open heart surgery I was limited to walking with a walker and there were many things I couldn’t do for myself yet. At first I had to have assistance getting in and out of bed, going to the bathroom, and getting situated in a chair (or wheelchair) to sit for a while. My CMT limited my mobility even more. I needed assistance to stay safe.
Four days after my surgery, Monday, I had checked all the boxes and passed the various tests so I was ready to be released from the hospital. But there was a caveat. I needed to have someone with me 24-7 to ensure I was safe. That was a problem because my wife works full-time during the week and my son who lives with us is in college so he has to be out each day for school. I needed to be able to be home alone for 12 hours.
They decided I needed to transfer to inpatient rehabilitation to get me to the point where it was safe to be alone. The nearest opening for that was 18 miles away at another Inova hospital at Mt. Vernon, VA. It was Tuesday before they got it all worked out. I was taken in a medical transport in a wheelchair to Mr. Vernon hospital. Mt. Vernon hospital is a much smaller hospital than Inova Fairfax where I had the open heart surgery, but they had a massive rehab department with gyms and workout areas that included a kitchen, a laundry area, stairs, car models, a dummy metro car, beds, toilets, showers – just about every scenario required to put me through the paces and show me how to function on my own after open heart surgery.
I entered that hospital with mixed emotions. I wanted to go home. But I didn’t want to put an undue burden on my wife and son. This hospital was further from my home so it would be more difficult for them to visit me regularly. And although I didn’t articulate the concern, I was not ready to admit I needed help with the basic chores of life. I do not like getting others to tend to me or do things I can do for myself. I certainly do not want to admit I am in any way limited or unable to do certain basic things. But here I was, limited and unable to do basic things for myself. Another fine mess.
That first night in rehab, and again the second and third nights, a new symptom of the surgery emerged. This was a symptom that prevented my sleep and caused a great deal of pain – pain that even the narcotic drugs in the hospital couldn’t cut through. I will explain more in my next post when I continue to document my recovery following open heart surgery.