By Nancy B. Schmitt

"You have Chronic Kidney Disease (CKD) and you will probably need dialysis or a transplant within a year."

Those words were spoken to me in December, 1993 when I finally had a diagnosis after weeks of uncertainty while being poked, pricked and posed for tests ordered by several medical specialists. After hearing all these new medical terms, I needed to escape. I drove off in my car to visit a friend to shed my tears and disbelief. It took months of hard work to feel like a whole person again with a future.

It all began as my appetite all but disappeared over a year's time and I lost almost thirty pounds. I was more tired than normal, but I rationalized that away as a single working mother with a stressful new job. I continued to think that way, until after a routine blood test for hypothyroidism and hypertension. I was told that something was not right with my kidneys. I did not feel any different, although I would remember the excruciating backaches and fever from a kidney infection years before.

Suddenly I was learning this foreign language of urology, rheumatology and nephrology as I was checked for urinary tract obstructions, reflux and immunological diseases. When a number of possibilities were ruled out, the nephrologist gave me his diagnosis; interstitial nephritis, probably caused by a drug I had taken in my past or by lupus.

Following three days in the hospital for an open biopsy to get more information about my kidneys, I was given three sheets of paper describing a low-protein, no added salt diet to relieve kidney stress. I felt good because I wasn't a salt shaker addict, sprinkling my food before or after tasting it. But the lists showed me that I needed to eliminate my consumption of sauces, canned soups, condiments, processed foods and meats and many prepared frozen foods. I believed my dietary changes could give me some precious extra time before dialysis or a transplant. Life as I had known it simply stopped, my coping skills snapping off like so many ice-laden tree branches. Sadness comes first. If we as human beings can mourn the loss of loved ones, pets, possessions, jobs, then certainly we can and need to mourn the loss or change in ourselves. A widow for eight years, I thought over and over again about the pain for my children and stepchildren in facing the mortality of another parent.

One night shortly after the biopsy, I had a startling dream. I was reaching up through a bright shaft of light to my late husband, feeling ready to let go and join him. I woke up terribly shaken, thinking on the one hand how easy it felt in the dream to just let go and on the other, how I absolutely wasn't ready to die.

I began to put my life's clutter in better order. As I recovered from the biopsy, I suddenly began to organize papers and photographs, which were collected over the years, into notebooks, files and albums. I laughed, cried and sometimes even groaned as I relived the big and not so big events in my memory. Reviewing the direction of life I had been on, I could better see what corrections I really wanted to make.

Although I had already been seeing a counselor sporadically about stress management, I needed something more connected to chronic illness. I went to a weekly drop-in group at a local hospital where I could cry, laugh and complain without the emotionally-based comments and questions from family members and close friends.

Even though I do not regularly attend church, I continue to accept the numerous prayers of those who do. I also keep a journal, taking a word or a phrase such as "fear" or "where now?" and writing down my thoughts and worries at that moment.

I found my county library an invaluable resource for medical journals and books. Family members with computers and Internet connections supply me with additional information. I joined the American Association of Kidney Patients (AAKP) for their publications and brochures, which are full of invaluable information, and their patient advocacy. I read materials on nutrition and health. All of these sources have given me knowledge to make me as informed as I can be.

In addition to all this medical and nutritional research, I also had to get back in tune with my feelings. My reading has included books about mind-body connections in life-threatening illnesses and coping with chronic illness. Those insights helped me enormously to see that I am so much more than just a body with failing kidneys. I still like to write, go out for breakfast, read, knit and enjoy family gatherings. I continue to laugh, share, plan and even cry sometimes. I am still me, even though my body is smaller, weaker and vulnerable.

Focus on the here and now. My CKD has been a major wakeup call, a not so gentle reminder of a phrase my late father said so often, "Life is too short." I continue to explore and question my disease. I am grateful for the advocacy, knowledge and caring of my nephrologist. Along with periodic shots, I have a medicine chest full of prescriptions that also help keep this disease in check, monitored by monthly blood tests. I know I have to be not only an educated patient, but a respectful one. Nine years as a pre-dialysis patient is a gift that is hard to explain by me and my nephrologist. These kidneys are only about ten or twelve ounces of the whole me. That leaves a heck of a lot of weight to pursue and enjoy everything else in my life.

Nancy B. Schmitt is a CKD patient who lives in Exton, Pennsylvania. She is also a member of the AAKP.

This article originally appeared in the June/July 2003 issue of Kidney Beginnings: The Magazine, Vol. 2, No. 2.

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