Caitlin J.

Adult, FSGS

I went in for a physical for summer camp when I was 11, and my protein levels came back high. That was the beginning of my battle with kidney disease. For the next several years, my mom dragged me from one doctor to the next, trying to find an answer. We finally found one when I was about 14. He immediately scheduled a biopsy. Several weeks passed, and right after my 15th birthday, I was told I had FSGS. Again, my mom frantically searched for more doctors until we found one in Houston (I’m originally from near San Antonio). So every few months, we hiked up to Houston for appointments and procedures.

I bounced around different doctors. Then I started the steroid treatments. That was probably the worst thing I have ever gone through. I reacted to them horribly by gaining 50 pounds of water weight in two months, which resulted in severe stretch marks. Time passed. and combinations of medications had been tried. When I was 19 and in my freshman year of college, the worst happened. I lost 50+ pounds drastically, became severely anemic, and ended up in the ICU for four days. I received two blood transfusions and started dialysis. That was the biggest turning point.

Before I left the hospital, my newest nephrologist walked in, introduced himself, and told me we needed start the process for a kidney transplant. After months of testing and clinic visits, I had my first kidney transplant. My mother was able to donate to me,a s if she hadn’t already done enough. Almost immediately after surgery, the kidney wasn’t working. Not because of rejection, but because it was placed incorrectly and didn’t receive the proper blood flow. We immediately started planning for the next surgery. Luckily, my big brother was also a match. Almost exactly a year after my first surgery, I had my second kidney transplant. Like a miracle, everything went incredibly well. From that day on, I’ve been 100% healthy. All of my levels are normal, and the kidney has been functioning as it should be.

Since then, I have gotten married and was even healthy enough to have my beautiful daughter without any complications! I continue to workout regularly, eat healthy, and just take my regular transplant medication. It was a long, painful and sometimes hopeless road but I thank God that He helped me through it and put all the right people in my life to be there for me during all of it. Although I know transplants are a great solution, a cure would be a far better thing for all affected by kidney disease!

Always have HOPE and keep your FAITH strong. Every time I had bad news, deep in my heart I always had faith that something good would come. That’s what keeps you going. Like my motto says: “Everything will be okay in the end. If it’s not okay, it’s not the end.”