Two Steps Forward, One Step Back

A few years ago, Rich and I joined a bunch of like-minded people and learned some basic ballroom dancing steps on Tuesday nights at a restaurant we usually associated with our yearly breakfast with Santa. An unrelated event broke my ankle and the lessons ended. But the back and forth of the steps, forward and back, have come to mind as we transitioned once more from hospital patient to recuperating at home. Step forward, step back.

Rich was released from the hospital on February 13th, ten days after he was admitted. We left with a whole new protocol of medications to help him heal from the damage to his lungs and continue to fight the PCP Pneumonia.

As happened last time, Rich’s breathing is not improving. This time we don’t delay but meet with the pulmonary doctor who puts him through a battery of tests. The results show no reason for the continued breathlessness…. His lungs are clear, he is able to walk without decreasing his oxygen levels. Thankfully, our doctor does not stop there and analyzes our medication list, running the calculations for body mass, which shows the medication to fight PCP is not the same dosage as he was receiving in the hospital. We’re told that there must be a reason why the dose of the tongue-twister drug of choice, trimethoprim- sulfamethoxazole, is now half of what it had been before, now only twice a day. Our stem cell guru is consulted confirms that there was some kidney function elevation while on the drug. We’re given the compromise of adding another dose daily. Thankfully, this does the trick.

As always, prednisone, the second in our PCP fighting arsenal, is a necessary yet distressing Rx for Rich. At the 40mg dosage he’s on, our considerable array of medications can’t help him sleep. A particular night Rich wakes up and is in distress. On steroids, it’s very easy for adrenals to run hot and cold and panic sets in quickly. Throughout the night, we analyze what is happening as we struggle to find solutions to the restlessness, the body aches, the host of symptoms that kept cropping up, one followed by another. Always there is the thought: is this a response to something else? Should we call the doctor?

As the sun begins to rise, we decide to attack this from another direction. No pain killers, no narcotics. They’re ineffectual. Instead, we’ll embrace the night and relax into it. If Rich is going to be awake all night, then rather than fight it, we’ll join it. Rich fills his phone with books on tape. On the night table a snack and his water bottle filled to satisfy those steroid munchies. Headphones are at the ready.

He falls briefly asleep and then the insomnia kicks in. He puts on the headphones and noshes as he listens to the stories unfold. There is no sleep, but there is no panic. The night passes. We’re in the clear.

Until the neuropathy hits hard the next night.

We opt for Tylenol and Advil instead of the big Rx guns. One night this works, the next it doesn’t. A very long week followed as we tweaked our routine.

Approval has been given, we can go for acupuncture. Our ace in the hole of pain relief is once more in our hand. It takes a few sessions and thankfully, there is relief not only during the days but the intense nights.

Rich’s body learns to work through the prednisone and sleep begins to take back the night.

Two steps forward, one step back. As long as we keep making progress, we’ll accept the dance!

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