By Leanne Livingston

The cliché, “like mother, like daughter” is not necessarily something you want to hear when it concerns kidney disease. At the age of eight, I was diagnosed with renal dysplasia. My second child has also been diagnosed with the same congenital kidney disease.

I was the proverbial bed-wetting child. Fortunately, because of this problem, my mother took me to visit doctors to discover the cause; an ultrasound revealed my kidneys were abnormally small and distorted. I was prescribed a daily regime of medications with the understanding that eventually my kidneys would fail and I would require dialysis.

My kidneys did not fail until I was 18 years old. During that 10 year span when I was a pre-dialysis patient, I felt and acted as normal as any other girl my age. Taking my medications daily seemed no different from other people taking a daily vitamin. I participated in numerous extra curricular activities and never considered myself sick.

Each month when I visited my physician, my mother was reminded that one day my kidneys would fail and I would need either dialysis or a transplant. This always angered my mother because she never accepted that I was ill enough to need either of the two treatment options. She told the physician that I was not sick and did not act sick, so how could they say such things.

One day, the doctor came into the room after receiving my latest lab results and informed my mother it was time to choose a treatment option. My blood test confirmed my creatinine had reached a level that warranted dialysis. We were then referred to UCLA Medical Center. We were in shock.

The testing at UCLA again confirmed I needed to be placed on dialysis immediately. We were still in a state of disbelief because I was not feeling any effect of failing kidneys. We faced a whirlwind of choices and elected peritoneal dialysis.

Ultimately, I wanted to receive a transplant. We were again challenged by more decisions. Should we elect for living related donation or place my name on the national kidney transplant waiting list? In case a family member was not compatible, we chose both options. While my family was undergoing the test to determine compatibility, a cadaver kidney became available. I was lucky, I only waited six months on the list.

The kidney transplant was successful and I had no complications. My life seemed normal, and we all knew I would have to take anti-rejection medications daily, but I knew I could handle this.

My life seemed to be taking a normal course and later I married and became pregnant. I knew I needed to talk to the doctors at UCLA to research the type of care that would be required due to my transplant. I learned that my prenatal care would be treated as high-risk, and I would probably deliver early and by C-section.

My pregnancy was normal and I did not experience any complications with my kidney. My first child (son) was carried to term and delivered without the C-section procedure. He was healthy and so was I.

One year later, I became pregnant with my second child. Again, I was considered high-risk and informed of the same cautions. My pregnancy seemed to progress normally. At 35 weeks however, I went into labor. My daughter, Devyn, was seven weeks early and her lungs were under-developed. During her stay at the hospital, the doctors mentioned her creatinine level was abnormal. At this point, with my knowledge of renal failure, I knew there was something wrong. Before she was released, they diagnosed her with the same congenital kidney disease that I had. My worse fear was coming true.

I was in a state of shock. I immediately called the pediatrician who treated me when I was a child and inquired about my kidney disease. He was kind to go over my condition and was astonished that I would now be taking my child through the same steps I once walked many years ago.

After Devyn came home from the hospital, the monthly doctor visits began, I was now following the same path my mother had with me and worrying about the same treatment options. It was surreal to take my child to the pediatrician who once treated me for the identical condition. Devyn’s condition was stabilized with medication until the age of one.

I took Devyn to UCLA, which is where I received treatment. I wanted to take her to a place I felt comfortable. It was “strange” to see my past physicians, however I would have preferred different circumstances. Many of the doctors commented that they were amazed to see such an unusual case.

While I was pregnant with both of my children, there was never any mention of renal dysplasia being hereditary. In fact, at one point my physician mentioned it would be like hitting the lottery twice. I would like to know why a sick child and not the lottery.  

Devyn was on dialysis for two years before she received a transplant. Those two years seemed like forever since I received my transplant after only six months on the waiting list. I found it more difficult taking care of Devyn on dialysis as a mother, than it was taking care of myself as a teenager.

When we finally received the call for Devyn’s transplant, my thoughts drifted back to when I received my transplant. It is sad to admit that as a teenager, I really never gave any deep thought to the donor family and their loss. All I knew was I no longer had to be on dialysis. My emotions were very different however, when it was Devyn’s turn. I will admit as a mother, my first thought was the freedom Devyn would experience with the transplant. My immediate second thought though, was for the family and their tremendous loss and the courage of their decision to give the gift of life.

I knock on wood when I say everything is now great. Neither Devyn nor I are showing any signs of rejection. I have had my transplant for nine years (February 1989) and Devyn has had her transplant for five months (October 1997. As a mother, 28 years old, and daughter, five years old, we take our daily medications together, and we compare our scars. We always tell each other we are beautiful no matter how many scars we have. The factors that have helped me cope through all of this, are positive thoughts and family support. It is important to keep in mind that you are only dealt what you are capable of handling. Today, I am a stronger person because of the hand I was dealt, first as a child and now as a mother.

 This article originally appeared in the Spring 1998 issue of aakpRENALIFE,  Vol. 13, No. 5.