If I could take a giant step into fantasy, I would transport myself into the film The Wizard of Oz. I understand Dorothy, who was whirled away from the safety of her home, and then embarked on a long search to find her way back. That young, vulnerable girl always reminds me of my own whirlwind life and battle with kidney disease. Like Dorothy, I, too, set out on a search for “home,” a place of comfort and hope.
I am thirty-seven-years-old.
For the past three decades, I have lived with dialysis, multiple surgeries
(thirty-five), two unsuccessful transplants, one, finally, successful transplant
and, along the way, been poked and prodded with every instrument known
At the time, the medical community was offering much hope with the advent of kidney transplantation procedures. This option looked very promising for me. However, since no one in my family matched my blood type, I was placed on a waiting list.
The Wicked Witch
Then, at age seventeen, I received a second kidney, but it was infected and lasted just three weeks. Exhausted, disappointed, and feeling lost, I received the final blow. The doctors informed me that my chances were slim to none that I would ever have a successful transplant. I have negative type O blood and a very high antibody count.
I had lived with chronic kidney
disease for nearly my whole life, and the situation was disheartening.
I felt isolated, alone, and angry as hell. Ironically, it was my anger
that propelled me forward and into making an important decision. I could
sink further into despair, or I could beat the odds and lead the fullest
life I could with the time left to me.
The Yellow Brick Road
The Good Witch Appears
Arriving at camp, I was revitalized
by the beauty of the mountains and the fresh clean air. The following morning,
I went to breakfast, and played some ping-pong and volleyball. Then, from
a distance, I could hear someone frantically yelling, “Has anybody seen
I agreed without much enthusiasm, for I knew that they always called several people, and just two would receive transplants. I also was nagged with the reality that transplantation had failed me twice. Still, despite myself, I nurtured a glimmer of hope. I was nearing my twenty-fourth birthday, and had spent half of my years on dialysis. Maybe, just maybe, this was my time and it would work. To my amazement, tests showed that the available kidney was a perfect match for me. That was thirteen years ago.
My new kidney works very well. I was very lucky to be given another chance, and will always be grateful to my organ donor, a young man who lost his life in an automobile accident in Colorado. I also am aware that a transplant is not a cure, but rather, another form of treatment. I could be back on dialysis any day.
The Munchkins Listen
I also wanted other people with kidney disease to know that they are not alone. So, I founded the Renal Support Network, a non-profit organization. This network recently published the seventh edition of its directory for kidney patients and families. Ten thousand copies currently are distributed throughout Southern California. In addition, we host an annual Prom for teenagers who live with kidney disease.
I remember when I was in high school, I didn’t relate to other teens, because I was dealing with serious health problems and they were dealing with trying to get a date. So we never connected. I don’t want other teens to miss out on this important “coming-of-age” event, so every January I throw them their own dance.
This year more than two-hundred-fifty patients and their guests danced to live music, had their makeup done by professional makeup artists, glamour photos taken, and, most importantly, had a chance to connect with others at an event where they are often denied admission. One Friend Can Make the Difference. At the first prom, one of the boys told me he didn’t know girls on dialysis could be so pretty. This year it was very similar to any other prom, including a brawl that almost broke out between two guys fighting over the same girl, whom they’d both met at dialysis! The Paramount television series “Life Moments” will be featuring this year’s prom in a special broadcast on August 25th, 2003.
Tapping My Ruby Shoes
Ultimately, I earned a seat on the Patient Advisory Committee for the Southern California Renal Disease Council. The council sent me to a meeting in Florida as its representative. Impressed by my passion for the cause, the owner of the renal care company offered me a job on the spot. That was my start working in the field I love. I went on to be a product specialist and regional sales manager, traveling to over thirty states and over five hundred dialysis facilities.
Today, I run my own company, Hartwell Communications, was appointed to California Governor Gray Davis’ Rehab Council, publish the award-winning website iKidney.com and my book “Chronically Happy—Joyful Living In Spite of Chronic Illness” is in bookstores nationwide.
Still, something was missing. I had to find my heart, something I had avoided for fear of rejection. In early 1996, after I’d joined Toastmasters, I met Dean, the man I married. I had previously gone through “dating hell.” Dean was different. He wanted to know everything about me, and didn’t change the subject when I spoke about my hopes and fears. We had many things in common and enjoyed each other’s company. Our friendship evolved into love.
We have now been married for six years. Our family includes Johnny, an African gray parrot; Kanyon, a border collie mix; Jafar, a doberman/shepherd mix; and Sophie, a gray tabby cat.
Home at Last
Fleitas, Ed.D., R.N.
Last updated: November 14, 2004