Summary

The provided content details a couple's struggle with kidney disease and the imminent need for dialysis, amidst the challenges of the Covid-19 pandemic.

Abstract

The narrative centers around the author and their partner, Ben, who has Stage 4 kidney failure and multiple underlying health issues, including diabetes. The couple has been extremely cautious for the past three years due to the Covid-19 pandemic, with the author altering their work schedule and taking on all errands to minimize Ben's exposure. Despite their precautions, Ben's health has deteriorated, leading to hospitalizations and the recent news that he must start dialysis immediately. The author grapples with the emotional and logistical implications of this development, including the impact on their retirement plans and the need to balance work with Ben's healthcare. They express fear and uncertainty about the future but find some solace in the privilege of access to dialysis and the potential therapeutic benefits of writing about their experiences.

Opinions

The author expresses gratitude for the privilege of access to dialysis, contrasting their situation with those in less fortunate circumstances who lack such resources.
There is a sense of resignation and sadness about the fact that their life will never return to the pre-Covid 'normal.'
The author is worried and depressed about the future, acknowledging the need to stay strong and avoid emotional breakdowns.
Despite being a private person, Ben has agreed to share their story publicly to potentially help others facing similar challenges.
The author values planning and organization but feels that their life is currently on hold, waiting for medical guidance and instructions.

There is No Normal

Our dialysis story — chapter one

Image Credit: Kidney disease by Nick Youngson CC BY-SA 3.0 Pix4free

We’ve been very cautious for the last three years, doing all we could to avoid Covid. Ben has several underlying health issues, including diabetes and kidney disease, making Covid a certain death sentence for him, especially early in the pandemic.

I changed my work schedule, working fewer hours and mostly in the evenings and weekends to avoid contact with people who are very cavalier about the virus. My co-workers’ reluctance to practice virus mitigation led to several infections, the most recent being just two weeks ago, that I couldn’t risk catching and bringing home.

Until we were fully vaccinated and boosted, I did all the shopping. Ben only left the house for doctor appointments and neighborhood walks.

I’ve eaten at local restaurants with friends on four occasions, but I always opt for outside dining or choose times when the restaurants aren’t busy. Ben hasn’t eaten out since 2021 — the time when I got food poisoning that eventually led to a five-day hospital stay.

We haven’t traveled together outside our city since the fall of 2019. I’ve gone on a few birding road trips with my friend Gina but never further than 30 miles from home. In February, I spent three days at Disney with my daughter and her family, fearful I’d bring home Covid and grateful I didn’t.

I never thought we’d still be dodging the virus bullet after three years, but I felt like we were inching toward normal. Maybe next year, we could take a weekend trip, or Ben would feel safer at a restaurant, movie, or play.

Ben’s been in Stage 4 kidney failure for years. His kidney function fluctuated, even improving to low Stage 4 for almost two years, but last year was bad for him. First, a stomach virus led to nine days in the hospital, leaving him worse off than when he arrived. Then, a fall resulted in a brain bleed and another hospital stay, that time in the Neurological ICU.

It was all too much for his kidneys. His nephrologist told us this week that Ben needs to begin dialysis.

We knew this would happen sooner or later. Of course, we hoped for later — much later. Last month his doctor warned that dialysis was on the horizon and definitely before the end of the year. We thought we had a few months. We were wrong.

In the past month, Ben’s kidney function decreased by two percentage points, and his BUN levels went up. Dialysis is no longer something in the future.

Image Credit: Bruce Blausen via Wikimedia Commons

We are scared and worried. The doctor and his office manager said all the encouraging and optimistic comments that you would expect. Still, they did little to relieve our concern and the sad realization that we’ll never return to what used to be normal.

Dr. E is from a poor Caribbean island and reminded us that most people in the world don’t have the option of dialysis because they can’t afford it or it’s unavailable. Our privilege to have access to dialysis is appreciated by both of us, but still, it’s an unwelcome development.

I’d hoped to be retired by the time Ben started dialysis. I wrote about my retirement plans being waylaid here. Without the possibility of retiring or even shortening my hours, I must juggle work and his healthcare. Yes, I’ve been doing that since last June, but I’d hoped it was winding down, not gearing up.

Dr. E recommended peritoneal dialysis (PD), a type of dialysis done at home. We don’t know all the details yet, but the doctor will refer us to a local dialysis center for training, we’ll undergo a home inspection, and Ben will have surgery to insert a tube in his abdomen.

It’s important to start this lengthy process as soon as possible. The last thing we need is for Ben’s BUN levels to become so elevated that he must be hospitalized to flush toxins from his body.

I thought our world had become very small over the last three years, but now, it’s become smaller. We will never return to the life we knew before Covid.

I’m worried and depressed. I don’t have the time or money for therapy, so I decided to write about our experiences with the dialysis process. Perhaps writing will help disassociate my feelings from our reality. I can’t get bogged down in emotion. I had several meltdowns last year and can’t risk more. My mantra is I am a Rock, I am an Island.

Ben, who is a very private person, agreed to have his story told in hopes that it may help someone else.

The future is very uncertain, and that makes me anxious. I like to plan, schedule, calendar, and arrange, but we’re on hold, waiting for the next set of instructions.

So, I work, and I write, and we wait . . .