Dialysis has given me a new heart, and I am using it to its full potential.
During the decade prior to beginning peritoneal dialysis on Feb. 2 of this year, I was struggling. There were many days when I wondered if this would be my last. Getting dressed or making my bed exhausted me. I would pause before attempting a few stairs, saying under my breath in a mind-over-matter mantra, “It is easy for me to climb these stairs. It is easy for me to climb these stairs.” I’d do the same when walking from my apartment to my van or from my van to my office: “It is easy for me to walk this distance,” I would assure myself. “It is easy for me to walk this distance,” though I would have to stop every few yards and catch my breath.
I had reprieves during which I was asymptomatic, but these were short-lived. For years I slept in a recliner in the living room, since lying prone or on my side put too much pressure on my heart. I was frequently hospitalized for fluid on the lungs, fluid overload, or when I’d gone out of whack in the other direction, dehydration, which would also tax my ticker. Compounding these challenges were severe anemia, which required three blood transfusions; juvenile-onset diabetes; and two heart attacks. My medical emergencies and heart-stent surgery conveniently occurred on the weekends or during vacation, so very few friends or coworkers knew I was anything but perfectly health. And as much as possible, I spared my son from too much information. I wanted the world to see me as strong and vibrant, and for the most part it did.
Through all this, I continued to work as an adjunct journalism professor and as a freelance writer and editor. In addition, I also spent long hours at spas and chiropractor offices as a massage therapist. Attending to my private clients was often at the upper limits of my physical ability, especially carrying the 45-pound massage table and 20-pound bag of gear up and down steps into their homes.
Last December I was told I had two choices: dialysis or death. I seriously entertained the latter course, knowing that I wasn’t interested in being hooked up to a machine that would simply prolong my life and not give me any respite from the ordeals of the last decade. In the end, I decided on peritoneal dialysis, as it promised the most mobility, autonomy, and freedom. I had spent the summers of 2005 and 2006 exploring the back roads of the U.S. and Canada, living out of my van, and backpacking through Malaysia and Thailand before that. These are the kind of adventures I still aspired to have. With PD, I was told, I would not have to confine myself to large urban areas with hemodialysis centers. If I wanted, I could camp 50 miles from the nearest dirt town in the desert, far removed from electricity and running water, and still perform manual exchanges, provided I maintained the aseptic techniques I had been taught. This sounded like the program for me.
So on Jan. 30, I underwent surgery for the placement of a catheter into my abdomen. Because I had put off dialysis for so long, I had to begin PD right away with no time for the incision to heal. Almost immediately I began to feel so much better. Not only could I walk across the room without getting winded, I could walk for two hours without stopping and without chest pain. I can now bound up stairs like someone half my age. And I can dance the night away at my salsa class. As I told my nephrologist, “Except for a few really fantastic kisses, I haven’t felt this good in 10 years!”
So, when I think of what makes me live a joyful life in spite of kidney disease, I have to say that dialysis has given me the opportunity to create my own joy. Prior to PD, every waking moment seemed as if it could be my last, and this put a tremendous drain on my body, my mind, and my spirit. Now, I’m walking for hours and dancing up a storm. I am so incredibly grateful, filled with joy.
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