From alone to empowered: Margie’s journey with kidney failure
It was late winter, 1992. It was a cold, most unkind and unforgiving winter—my life changing, wish-I-could-turn-back-the-hands-of-time winter. After months of nausea, feeling exhausted, swollen ankles, and having difficulty concentrating on reading and writing legal briefs as an automotive litigation legal assistant, the diagnosis of my symptoms was complete, finite.
A nephrologist, who had quickly been assigned to me, had to be paged and summoned out of a Detroit Pistons basketball game to confirm the results of many tests: I had interstitial nephritis; my kidneys had failed. No more functioning kidneys. Have, then had, now past tense. They would not return. I could not get them back.
I was enraged, angry and bitter. Thunderstorms, dark as night, rained down on me, just like the tears that dripped down my cheeks, following me all the time, everywhere I went. I struggled to continue my important work, but was forced on medical leave.
Now, what? Medical decisions had to be made, because now, I was a renal patient. Now, I was one of those sick people that healthy people avoided, because they thought whatever awful thing I had could be contagious. I was a renal patient. I think you should try peritoneal dialysis, someone from my health care team suggested. Maybe hemodialysis, someone else recommended. I think I should talk to someone who is on dialysis or has been through dialysis. Is there someone I can discuss my options with? The collective response was, well, no—unless you want to count the patients, and you’d have to arrange to meet them yourself. No one on my medical team had gone through what I was about to go through. There was no one.
I began my ESRD journey alone. I made decisions; when they did not work out as I had hoped or dreamed, or planned, I made other decisions. I started to read as much as I could about my diagnosis, trying to comprehend what had happened to me. I asked many, many questions of anyone who would answer them. In 1994, I eagerly began peer mentor training and became a peer mentor in 1995. I really wanted to be there for other ESRD patients to talk to because I had no one to talk to who had walked in the shoes of a renal patient (those two words again).
During my ESRD journey, I learned to salute the best that was inside of me—I discovered that I was strong, that I had become assertive and confident about my personal health, that I was not afraid to voice my concerns to my medical care team. No longer did I meekly accept decisions made by my nephrologist or other specialists. I had found my voice; I was no longer afraid to use it. This was my body; no matter how many surgeries and extended hospital stays I endured, no matter how broken and dysfunctional it was, it was still mine. I began listening to it carefully and tried to nurture it, day in and day out. As a proud peer mentor, I began sharing my personal experiences with other patients and with medical professionals.
In addition, I have been privileged to participate in two renal research studies conducted by Arbor Research of Ann Arbor, Michigan. I believe that my input provides renal researchers with some much-needed feedback direct from an actual patient living with ESRD. I know that the wonderful and innovative research on kidney disease that is being done by Arbor Research and other trailblazing companies will eventually result in a cure, and I am humbled and happy that I am doing my part in moving this research forward.
That late winter’s day when I was diagnosed with ESRD was 25 years ago— yes, 25 years! As I continue in my journey, I volunteer, I read, I write, and I purposely stay engaged with the world around me. I have a beloved husband, caring and devoted friends, and I am surrounded by a determined and committed renal family that I look forward to interacting with at least three times a week. I have acquired a curious, courageous and adventurous nature along the way. You see, I have tried all modalities of dialysis— peritoneal, continuous peritoneal dialysis at night, in-center hemodialysis, kidney transplant, and, after rejection of my transplant, home hemodialysis. Now, back at in-center dialysis treatment, I possess a spirited and strong affirmation: I do have kidney disease, but it does not have me. I am living proof that ESRD patients can choose to live, and choose to live well.