My story and I’m still alive to tell it

Brenda

I had my first kidney stone when I was 17. I was at a slumber party, passed out, and woke up the next morning in terrible pain. They cut through my left side, from my belly to my back — and that was the end of my bikini days.

After that, I was in the hospital about every three months to have my kidneys flushed to remove the stones. Eventually, a new procedure became available, and I was one of the first to have it done. I had so many stones that I started saving them in a jar.

When I was around 35, I decided to do my own research to better understand what was causing these stones. That’s when I discovered that a vegan diet might help. I tried it for a year — and for the first time, I had no stones. I took this information to my doctor and asked to have myself and my stones tested. In 1981, we finally got a diagnosis: Cystinuria, a rare inherited kidney disease.

In 2014, I retired from the school district at 67 and moved to Kentucky. There, I met a wonderful nephrologist, Dr. Raz, who told me about a new medication called Thiola, designed to help prevent kidney stones. It was very expensive, but I was able to get a grant to help cover the copay. I told him, “Bring it on.”

Within three months of starting Thiola, I became stone-free. It’s been about 10 years now — I’m 78, and I haven’t had a single kidney stone since. I still watch my diet carefully and stay hydrated with water, cranberry juice, lemonade — anything to keep my kidneys flushed and functioning.

Over my lifetime, I’ve had 22 surgeries, eight of them for kidney stones. Despite the damage they’ve caused — I’m currently in stage four kidney failure — I fight every day. I’m grateful for a high tolerance for pain; I often wouldn’t feel the stones passing, just a fever that let me know it was time to see a doctor.

I continue to take Thiola, still with the help of a grant. There’s now a generic version available, but switching to it would mean losing my financial assistance, and the out-of-pocket cost would be too high. I’m hoping insurance policies might change, but at my age, I just keep holding on and trusting God.

I’m thankful for the doctors who truly want to help — and it’s true, some only treat the symptoms instead of the cause, which is why it pays to do your own research. I’ve learned that dairy and meat products are some of the worst for causing stones.

That’s my story — and I’m still here to tell it.