You don’t get to the age of 35 without some troubles in life, but 1998 was shaping up as a pretty good year for me. I was in public relations for a credit union, lived in one of the sunniest regions in the nation, and physically, I felt pretty good. I traveled at least once a year for work and I was pretty active, charging through each day like the Energizer® Bunny.

My only physical handicap: a terrible golf swing. It’s a little embarrassing, since "Pop"—my father—is a retired golf instructor, but I kept hitting the driving range to work on my high handicap.

Around July of that year, however, I started to feel different – trouble keeping food down, significant weight loss, and sheer exhaustion at day’s end. I went to the weekly family Sunday dinner and my aunt, a retired nurse, looked at me and said: "You are seeing a doctor. Tomorrow!"

My doctor, whose practice was around the corner from my then apartment, didn’t believe the first blood tests results and took them again. Then he called me on the phone just as I walked in the door from work on a Friday evening. He said "I’m going to cut to the point. You have kidney failure."

It was a bombshell, but he knew he could tell me that way and I’m glad he didn’t pussyfoot around. I was close to End Stage Renal Disease from FSGS and before we talked more about it, he wanted to give me time to compose myself. I actually did not need it. I’m not a negative person and I told him I could deal with it.
I have to admit that End Stage Renal Disease sounded like a death sentence, but I decided to find out everything I could about FSGS. Thank God I found the NephCure web site and all the good information on there.

A long time ago, I had been on a vegetarian diet for seven years and so I started eating less meat and trying to live as normal a life as possible with FSGS, even though my kidney function was at about 15 percent. But after a trip to New York, I came back home feeling bad. The toxins were building up in my system and I was really sick. I went to the doctor and said "I need dialysis now." He also discovered that I had gall stones and I was put in the hospital. That was in June of 1999.

I won’t go into too many details because I had a few complications from dialysis and then I had a transplant in April of 2002. Things were a little rocky and I wound up being admitted to the hospital a dozen times since then. The transplant only lasted six months and I chose to have the failing cadaveric kidney removed, so now I go to dialysis three times a week. I had been a bit of a workaholic and my doctor put his foot down and said my health was my major job now so I had to leave full-time work.

That’s okay, because I do other things now. NephCure asked me to begin a chapter in San Diego and my PR skills have been helpful in setting up a patient education seminar that NephCure is conducting for both Nephrotic Syndrome and FSGS patients and families.

Complications are something I’ve dealt with. In January of 2003 I had a really bad headache one morning and then I couldn’t see out of my left eye. My boyfriend took me to the emergency room and the doctors said I had suffered a mild stroke. I wasn’t paralyzed but my peripheral vision was affected. I’m just starting to drive again and I’m really into crossword puzzles to help stimulate my brain.

I wouldn’t say I’m religious but I am a spiritual person. I haven’t been depressed much or anything and my parents are amazed at how serenely I’ve taken these things. I figure they are just challenges in my life, but this kidney disease does not define my life, it is not who I am. I am more than that.

Right now, I am on a waiting list for another transplant and I have a lot of faith in my nephrologist, Dr. Theodore Thomas, who is at Balboa Nephrology Medical Group and works with Scripps Mercy Hospital.

I am working with NephCure because it can help others like me. Information is power, and that is why we are starting the San Diego chapter, to share information, support each other, and raise funds for research. We need to find the cause and cure.

A few years ago, I contacted another FSGS patient who did not want to go on dialysis initially and I became something like his support system. He went on eventually to have a transplant and he is fine. He is thriving.

This kidney condition can make you feel alone at times, especially in the early stages. That’s why I’m devoting time and energy to bring together others and deal with the disease. We know we have top scientists trying to unlock this puzzle. It is good to know we’re not alone.

Right now, I’m determined to move on with my life and improve things for me and for others. That reminds me: I have to ask my doctor if a transplant will help my golf swing. You never know.
Like I said, I’m an optimist.