About Me

Hi, I’m Shaina.

A little bit about me before I tell you my kidney story. I have my MFA in creative writing and currently work full time as an editor. For my own writing, I mainly work in the genre of speculative fiction. Think fantasy, some horror, magical realism . . . that kind of stuff. My dream is to publish work of my own someday.

I play video games. I go to Renaissance fairs and large gaming conventions, even started a small one with some friends. I’ve traveled a bit throughout Europe in my time but am aiming to do more once COVID-19 (hopefully, please) dies down. Japan. Ireland. Scotland. Those are my top three.

I’m married to a supportive and encouraging spouse, and together we are raising three fur kids: Noodles and Sushi, cats; and Flynn, our sweet and insane German shepherd.

But enough about me . . . and more to the point of this whole endeavor. Back in 2016 I was diagnosed with focal-segmental glomerulosclerosis, or FSGS. In the simplest terms, it means the glomeruli, the tiny filters in the kidney, are being scarred and decreasing my kidneys’ overall ability to function properly. To make a long story short, since then I have tried six months of Prednisone (which was terrible and wrecked my body), then Prograf, then Rituximab—a chemotherapy drug—and finally moved on to a double-blind study for Sparsentan. Nothing to this point has been able to place me into remission. In late 2019, my incredible nephrologist was able to provide me with free genetic testing. The testing confirmed nail-patella syndrome (NPS), which most commonly affects the nails and kneecaps, hence why I sometimes get knee pain after too much walking or running. NPS, in rare instances, can develop into FSGS. So we now know where my FSGS came from . . . and why none of the treatments have worked, as NPS FSGS has been shown to be unresponsive to traditionally FSGS treatments.

As of today, my GFR, or my glomerular filtration rate, has decreased enough to be placed on the transplant waitlist. In January of 2022, I starting peritoneal dialysis, or PD. At this point, I will continue to be on dialysis for the rest of my life. But this is where you can come in. by provided a life-saving gift of a kidney. I could have my life back in my hands and no longer need a nightly machine to keep my alive. And a living donor kidney is the absolute best option; they have longer lifespans than cadaver kidneys, and surgery can be scheduled much quicker. Waiting for a cadaver, the average wait time is three to five years. Asking for a donor is huge, and giving a kidney is even a greater a task. Understandably, not everyone is able to do so. All in all, this procedure, time off work for recovery, and any other related expenses are going to become difficult. If you are able, donating funds to help in this journey will be extremely helpful and appreciated.

In the end, I just want to have my life back. I want to return to traveling. I want to play with my dog without getting tired. I don’t want to rely on a nightly machine to provide me the energy to do day-to-day tasks. I want to run around Renaissance fairs with my incredibly supportive and loving friends. Any and all help would mean the world to me and can help me to no longer be hindered by two little bean-shaped quitters.

Thank you for reading. And thank you for being here.