Charity founder has been on dialysis for 20 years

By Laura A. Hipshire for the News-Herald

John Cook, 39, of Riverview has spent more than half of his life on dialysis.

He faithfully goes for treatments three times a week for seven or eight hours each time, which means he's endured more than 24,000 hours of dialysis to date.

"I was diagnosed with end-stage renal disease 20 years ago," Cook said.

When he was 19, he began experiencing excruciating headaches and went in for a checkup. After a battery of tests, he was told his kidneys were damaged.

"Both of mine stopped functioning. No one in my family has a kidney disorder, so they never really knew what caused it. It may have been high blood pressure," he said.

Cook immediately began dialysis treatment, and was placed on a waiting list for a donor kidney. Although many people receive donor kidneys from their relatives, it wasn't an option for Cook.

"If you're more than 50 pounds overweight, you can't donate a kidney," he said.

He buckled down and followed his doctor's orders to follow a low-sodium diet, take blood pressure medication, exercise and undergo a rigorous dialysis program, which he did for the next 14 years.

Then he got the phone call.

Cook, a professional chauffeur at the time, was driving a luxury sedan on his way to pick up a passenger when his phone rang.

"They told me I had five hours to get to the hospital for a kidney transplant. I had to stop what I was doing, and just go. It was kind of a shock," he said.

After surgery, Cook said he endured the most pain he had ever gone through. It took him several months to recuperate.

"You have to go to the doctor every week after a transplant. My body was trying to fight it. They realized it wasn't working, so they took it out," he said.

"With all that I went through, I did have my hopes up, and then it ended up not working."

So he went back on the waiting list and continued with dialysis.

"Emotionally, it was very difficult. I was on a lot of steroids. My family and friends were very supportive, but I felt hopeless at times. I even pondered suicide at one time, but I kept going forward," he said.

A year before he had the transplant, Cook decided he had to do something about his situation.

"I felt like, why me? I was a big guy, I didn't smoke or drink. Then I decided to just suck it up and stop feeling sorry for myself, and start really living," he said.

That's when he founded his charity, the Really Living Corporation.

"Everyone has a family member or neighbor that may have cancer, diabetes or kidney disease," he said.

His group is geared toward helping people with terminal and debilitating illnesses and their families.

"We raise money to help people. The No. 1 issue is transportation. Insurance covers treatment but not transportation. Some miss treatments due to a lack of transportation," he said.

The nonprofit organization provides free transportation to those in need. It also helps people struggling financially by paying utility bills and donating clothing.

"We do about five or six fundraisers a year," Cook said.

Although there are a few other board members in the group, Cook does the majority of the work on its Web site (www.reallylivingcorp.org), including research, writing and fundraising.

Really Living also provides a wealth of information about various diseases, treatments, diets, and support groups.

"I want to do whatever I can to help," he said.

And in the meantime, Cook continues to go to dialysis 24 hours each week.

Cook said there are at least 50 other patients there at the same time he receives his treatments.

"They stick two big needles in your arm and hook you up to a dialysis machine. I usually sit in a chair and watch TV or talk on the phone to pass the time. Most people sleep though," he said.

Occasionally, Cook feels too tired to go for treatment, but he goes anyway.

"You can't afford to miss a treatment. Anytime you do, it increases your chances of mortality," he said.

Although the standard length of time for dialysis treatments is four hours, Cook tries to double that amount each time.

"Research shows the longer you go, the better it is for you," he said.

When he's not undergoing dialysis, Cook works out about three times a week. He also loves to play basketball, read, and watch a wide variety of movies ranging from "The Godfather" to "Pretty Woman."

These days, Cook has a great reason to stay motivated and on track with his treatment — his 4-year-old daughter, Gia.

"Once my daughter was born, I wanted to at least see her turn 18," he said.

Cook hopes that in the next year he will be called again for a kidney transplant.

"I'm also hoping that a lot of advancements will be made. I'm looking forward to the day when I don't have to have dialysis anymore. I am optimistic,"