In some of my recent columns, I discussed the tribulations I’ve faced trying to resolve the increasing severity of blurred vision due to cataracts. My heavy use of steroid medication over the last 17 years for treating Duchenne muscular dystrophy (DMD) was the catalyst for this issue. Earlier this month it all came to a head as I underwent my first of 2 eye operations designed to correct the impairment. 

I was anxious beforehand because I was having it done at an optometry facility not associated with the hospital where I see my DMD specialists—who didn’t provide me much support for this issue. Oftentimes, this can be problematic since going outside your typical network of rare disease care will probably lead to you seeing providers with only a layman’s knowledge of your condition. And that creates opportunities for mistakes being made.

I arrived for my operation early in the afternoon and was checked in. Shortly after that, I was called back to the surgery wing. Then it was time for me to transfer to the hospital-style bed from my wheelchair. This had been one of the areas of concern I had ahead of the procedure with my joints being prone to discomfort and limiting my ability to keep my legs from moving.

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There were several nurses there, and they had propped up some pillows around the middle of the bed to give my legs support. My dad transferred me as usual, but onto my back that I don’t lay on typically. Once I was comfortable he left the area, and the medical providers took over from there.

With laying on my back there had been some concern from the eye specialist and anesthesiologist because of my weakened breathing function. When I laid down like that on this day, I was able to breathe, but I was being impacted for sure. After my dad had put me down I was a little low in the bed. Still, in a slight state of anxiety, my mind was elsewhere, so this hadn’t occurred to me.

I informed the nurses that I’d like to be propped up in the bed more. The 4 of them made sure my legs were supported and gently slid me up with the help of a blanket placed underneath me. This passed without incident, which I thought was relieving.

While this improved my breathing, I was still leaning over in a way that made my neck uncomfortable. So I asked a nurse for assistance. A couple of them tilted the bed back and placed another pillow under my head before moving the bed back up. This made a noticeable difference. My neck was feeling good, and I was breathing as if I wasn’t laying down at all.

Then the anesthesiologist came over with some news. It had been determined that my narrow airway made going under anesthesia a risky option and that I would go without anesthesia. I can see how this could be alarming to some, but I was told there wouldn’t be pain. 

Minutes later the bed was wheeled to the operating room. I was then carefully tilted back again, and still able to breathe just fine. Since my head would naturally move during this type of procedure, my forehead was taped down. The eye specialist would perform the surgery.

They guided me through by calmly instructing me to keep the focus on a light in the far corner of my left eye. During this, the eye was covered by what was almost like a veil. It was also like a mini rain shower as drops were inserted throughout the process. This obviously wasn’t the best feeling, but the doctor was offering encouragement that was helpful. In just about 10 minutes it was over, and I was taken back to the other part of the wing.

There were a few things I think providers dealing with conditions outside their usual scope could learn here. I was most impressed by the patience everyone had. The doctor could have turned me away if they didn’t want to deal with the complex circumstances. But they were willing to work with me until we came up with what seemed like a suitable plan. They also demonstrated this when guiding me through the surgery. 

The nurses listened to me when I asked how they were about to position me each time I was moved. They showed patience and walked me through what they were going to do before they did it. 

I know it’s a cliché to say patience is a virtue, but when treating a patient with a rare disease it couldn’t be more true in my mind.