By Judy Weintraub, MS

I walk out of the hospital of Albert Einstein College of Medicine in New York with my mom at my side. The year is 1975 and I’m 15 years old. I am drained after yet another grueling dialysis session. I just walked out of suffering and now witness beauty and feel a glimmer of joy grow within me. I have an epiphany. It all happens at the same time. Joy and suffering. I cannot believe what I have to do in my life but I know one thing – I cannot let dialysis eat me up and take over. I vow to hold on to the joy.

It took me years to realize that suffering and joy are permanently connected – whether we are aware of it or not. For me, the trick has become to live life as if it will continue to sail forward, while at the same time to live fully in the moment, whatever it holds. “This too shall pass” is a phrase that applies to both joy and suffering and makes life that much more precious.

I had no idea what to make of the words “End-Stage Renal Disease.” How could I be “end-stage” anything? I had not even begun to live life. I thought the doctors were putting the kiss of death on me with that phrase.

A few months after I began dialysis, I received my first kidney transplant. It functioned for three months and wreaked havoc on my body, as well as on my psyche. It was during those months the magnificent gift of humor played a central role. No matter what new medical emergency we were dealing with, my mom and I always found moments to laugh. I found myself experiencing joy during dark times. As my body rejected kidney number one, I was competing in wheelchair races down hospital corridors with kids who had sickle cell anemia and brain tumors. When that was broken up, there were late night rounds of gin rummy.

Following that adventure, it was back to in-center dialysis and I experienced access problems firsthand. My second AV fistula was very weak and getting on dialysis was fraught with anxiety and pain. The surgeons were called in to consult on placement of a new access. “Hold on a minute,” a firm voice inside me said. “You want to go at my second arm, then there are two legs and I’m only 16.” My survival mode was developing fast and I was looking to protect myself. As if emerging from a fog, I spoke up, “I will learn to stick myself. Maybe that might help.” Talking back to doctors with my own ideas to manage my therapy? They were stunned. That period of my life symbolizes my own version of One Flew over the Cuckoo’s Nest. Yet, from that period, I uncovered an inner strength. To this day, I consider sticking my own needles the most valuable skill I ever learned.

I reached my goal of going to college and attended UCLA. My sister was married, living in Los Angeles, and that was where I wanted to be, to the chagrin of my parents. I was operating in a fantasy that, if I could just get out of my world, I would leave my medical woes behind. To a certain extent, it was true. My new life invigorated me, but I still lived in the same body.

There I was, a freshman, with a hematocrit so low I required blood transfusions every month. I was confident, smart and witty in the dialysis unit. I had grown up there. However, out in the world, it was different. Though my grades excelled, there was a lot I needed to learn socially.

And learn I did, graduating from college, forming relationships, going to graduate school and a full-time profession working with deaf children and their families. After seven years on the waiting list, I got a call for a second transplant. It was my first year as a teacher and I had not told any of my supervisors that I was doing dialysis. My dialysis life had headed to the closet after several unpleasant experiences with peers. My boss was speechless when I entered his office and announced, “I have to go. I was just called for a transplant.” “Oh,” he stammered, “How long will you be gone?” “It should not be for more than a few months,” I said.

I was married at the time and thought it was my chance to say so long to the dialysis routine. I harbored hopes of having a baby and felt this might make it possible. However, it was not meant to be. The poor kidney was in shock when it went in and never woke up. A month later, nothing was happening. I returned to the dialysis unit, feeling as if I was living an episode of The Twilight Zone.

The following year, I switched modalities to peritoneal dialysis (CAPD). The move to CAPD was the best thing I could do. It gave me freedom and a higher level of stamina than I experienced in years. Then came the release of EPOGEN. After more than a decade of living with hematocrits of 16-22, I saw my hematocrit rise. The day it reached 36.7, I presented red balloons stamped with that beautiful number to my doctor and nurse. I took up skiing, marveling that I was actually coasting down a mountain singing at the top of my lungs.

I began integrating different aspects of my life. Sharing with co-workers and acquaintances led me to realize the tremendous need to raise awareness of kidney disease in the public. It was vital to communicate to others with kidney disease the importance of taking charge of your life and managing your chronic illness. From this vision, the AAKP Los Angeles Chapter came into existence. We are now celebrating our 10th year and have a strong chapter with dedicated volunteers. We are proud to serve several hundred people each year through educational programs, newsletters, walks and inspirational events.

Joint problems and amyloidosis (from long-term dialysis) began setting in some years ago, and I knew I had to make a move. I returned to the transplant list, hoping a transplant might work for me this time. It lasted for a few months, with difficult complications. My doctor was very disappointed. He walked into my hospital room, morosely stared out the window, and said, “Why aren’t you screaming at me to do something?” “Because this is clearly beyond your control,” I replied.

There was one thing to do, accept my reality. I focused on one thing I never paid much attention to before – dessert. Specifically, baking brownies. I enrolled in culinary school, pursuing my lifelong love of cooking and food. I allowed my body, mind and spirit to focus on something that gave me joy as I struggled with the transition back to hemodialysis after being away from it for 13 years. Thankfully, I had my fistula and the skill of sticking needles was still in me.

After a couple years on in-center dialysis, I needed something more. Something that gave me the best chance to take on the future. I did my research and found that home hemodialysis, with long, gentle treatments through the night, offered me the greatest health benefits. I fought for it, and got it. It was, and is, a lot of work and I am so grateful that I hung in there. It increased the quality of my life beyond measure.

I lived the first 15 years of my life without dialysis and, as of this year, I am living 30 years with dialysis. There will always be a tender place in my heart for the frightened young girl who could not comprehend how she would make a life on dialysis and who prayed for the chance to go to college.

After a tough period adjusting to the nighttime home hemodialysis regimen, I am finally hitting a stride. It humbled me and taught me a lot, even at this stage in the game. When I see the sunlight dance on the leaves in the morning, it reflects how I feel inside on many days – light and free, with gratitude in my heart, for the choices available today. I continue to seek joy wherever I can. My hope for us all is to learn from our journeys and grow stronger for it.

This article is dedicated to the memory of three AAKP leaders: Cheno Rodela, Jim Ward and Bonny Wilburn. They each succeeded in their own way to light the way for others.

Judy Weintraub, MS, is founder and former president of the AAKP Los Angeles Chapter and serves on the AAKP National Board of Directors.

This article originally appeared in the March 2005 issue of aakpRENALIFE, Vol. 20, No. 5.

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