Battle Well-Fought

After living with kidney failure for five years, 20-year-old April Ayala received a kidney transplant June 30. She takes the time to talk about her rare disease.

Michele Hammontree-Garcia . Miami Herald, FL . West Miami Area: July 13, 2006.

As a freshman at South Miami Senior High School, April Ayala looked forward to showing her school spirit at sports games and hanging out with friends. But she was sidetracked when she was diagnosed with kidney failure.

For five years Ayala battled the disease with dialysis, medications and a positive attitude.

The now 20-year-old nursing student, of West Miami -- who isn't shy about sharing the details of her experience -- has found time to help others, recently traveling to a Philadelphia conference to speak about her rare form of kidney disease.

Soon after, on June 30, Ayala received a kidney transplant.

''Many people tell me they will pray for my daughter,'' Lupe Ayala, April's mother said. ``I tell them to pray that this will be the kidney that she will have for the rest of her life.''

Computer savvy and thirsty for information about her disease, Focal Segmental Glomerulosclerosis also known as FSGS, Ayala found the Nephcure Foundation online.

The group, which Ayala addressed on a panel in early June, helped her understand her disease. The ailment causes tiny blood vessels to harden, affecting kidney function, and attacks units within the kidney called glomeruli where blood is cleaned. Doctors haven't been able to pinpoint a cause for the disease or a cure.

Ayala also found support from Miami Heat player Alonzo Mourning, who suffered from the same kidney disease. She met him twice in the last five years and says that he inspired her to be positive.

''He told me that it is all in here,'' Ayala said, pointing to her head. ``It is mental, too, you have to believe you will get better.''

After her diagnosis, Ayala had to connect herself to a dialysis machine at home via a catheter in her lower abdomen for 11 hours a day. She also had to take a combination of about seven medications and vitamins.

''Everything I did revolved around dialysis. If I went out with friends and came home late, I had to stay in bed connected to the machine longer in the morning,'' Ayala said. ``I became depressed and failed ninth grade.''

After two-and-a-half years of daily dialysis, Ayala got an infection at the site of her catheter and had to switch to a different type of dialysis. It was administered at the hospital three times a week for about four hours.

Five months later, she got another infection and doctors fused a vein and artery in her left arm together to create a permanent access route for dialysis.

The new route is larger and stronger, and when touched, it can be felt pulsing with blood.

Less dialysis came with restrictions, though. Ayala couldn't eat her favorite foods such as pizza, cheese, oranges, bananas, or drink sodas.

''The first thing I ate after the transplant was a banana. I so missed bananas,'' Ayala said.

Other things have changed since Ayala's transplant. Her face, which had a yellowish hue, now glows with pink cheeks.

The most exciting part for Ayala: she can now urinate.

''I cried the first time I peed. Every time I go to the bathroom it reminds me that I am getting better,'' Ayala said.

Ayala plans to continue studying nursing so that she can help others. And she wants to imitate Mourning and spread the word about their shared ailment.

''People need to become aware of this disease,'' Ayala said. ``Some people have it and have no symptoms.''

Ayala also looks forward to supporting her mother, who is facing her second bout with breast cancer and is starting chemotherapy in a month.

''When she is down, I tell her to look to me for strength and she does the same for me,'' April Ayala said.

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To read April's story, click here.