As America enters the final days of the 2020 election, as we enter the eighth month of the Covid19 pandemic, we all face uncertainty. With the addition of the CardioMem last week, we thought our days of the uncertainty of Rich’s health were at an end. This little paperclip-like device was implanted in my cyborg’s pulmonary artery. There it would, via a talking pillow, send a report to the staff at the heart failure clinic. Every day, we’ve received a call to let us know how we were doing on that fine line of fluid retention. Drink more water? Take a water pill? What a wonderful tool to have in our arsenal! The guessing game would be over and done. We have a team behind us getting solid data every day.
Yesterday morning – was it only yesterday? – Rich was advised to take a water pill. At noon he was feeling well but tired and the water pill seemed to be doing its job. When I checked on him at 4pm, his tongue seemed thick and his words hard to articulate. We checked his blood pressure and it was on the mildly low side. But all the other side effects he’s experienced to date were there… unsteady on his feet, cloudy thinking, swings of emotions and that major tell, the struggle to carefully pronounce words with a tongue that didn’t seem to want to cooperate.
We called our team and the singing, chatty pillow was brought down to take another reading. The nurse practitioner called us back. The arterial pressure reading went from a high in the morning of 23 to a current low of 13. That water pill packed a punch! He sipped water as advised and there was a modest rise in his blood pressure. The team asked Rich a series of questions and told us to go to the ER. They were concerned it may have been another TIA. They didn’t like his difficulty with talking.
In these days of Covid, I’m sent home once I get Rich done with his registration intake at the hospital. It’s frustrating to walk away from the hospital, leaving Rich behind. These episodes are not remembered by him. There is a vulnerability to that amnesia. It’s hard to make solo decisions about your treatment when you don’t remember why you are there. The ER calls me to get answers to their questions. He doesn’t know what went on.
At home, I sit with my phone, waiting for a call with an update. I jump at each notification that comes on the patient portal, hoping for some information that will give me an idea where we’re going. More often than not, it’s bloodwork. Once again, Rich tests negative for Covid. Another ping of my phone. They’ve uploaded his medications list. Ping. Dx: Dysphasia. That speech difficulty.
And I sit waiting. I wait to call, wanting test results or consults to be done before I tap the number of the ER desk in my contacts list. The nurses are patient with my phoning, but there isn’t much information. They tell me he will be in overnight for observation. Rich texts me with small updates. An MRI is ordered. He’s had the CT scan. I keep watch on the patient portal. He texts he’s hungry. I text him to ask someone to get him a dinner. At some point, we both fall asleep; miles apart.
Gilda Radner, who knew a thing or two about cancer and chemo and dealing with illness, wrote “I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.
While we hope for answers to why these episodes happen and what triggers can we avoid, I wonder if we’ll know. Or if we will need to learn to live and find joy with this particular delicious ambiguity.