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My PKD Story
My PKD Story
Thanks for visiting. I want to provide information about my experience with polycystic kidney disease (PKD), to spread awareness of PKD, and to share my individual search for a living donor.
PKD is a genetic condition. It causes symptoms like high blood pressure and loss of kidney function, and ultimately causes kidney failure. I have experienced symptoms of PKD since my early 20's and it is common in my family. At 46 (nearly 47), my kidney failure is progressing, and it is time to find a donor.
The transplant centers encourage patients to reach out to the community to seek potential living donors. A donor can give a kidney directly, or, if they are not a match, they can participate in a "paired" or "chain" donation where they give to another recipient and someone from that person's support circle donates back to the original recipient.
For patients with kidney failure, a kidney from a living donor is the healthiest option and will last from 15-20 years. A deceased donor kidney will last from 6-10 years. If I am unable to find a living donor, I will be placed on dialysis. Dialysis enables people with kidney failure to survive as they wait for a transplant. For my blood type, the transplant list wait time is 6-8 years.
An organ donation is a profound gift. A healthy person can donate a kidney and live a healthy and full life with their remaining kidney. They become a part of the recipient's extended family and, of coarse, they are a hero for the rest of their life! My donor will sustain my life, enabling me to be here for my son as he goes to college, and possibly to see my grandchildren.
The information below provides details about kidney donation. If you are considering a donation, the first step is to complete the survey from California Pacific Medical Center. This allows them to reach out and start a discussion with you.
Living Donor Information and How to Become a Donor
Living Donor Information and How to Become a Donor
If you are considering being a living donor, complete the California Pacific Medical Center Donor Information Survey below. Completing the survey enables the transplant team to reach back out to you to follow up. If you start the process and decide against it, there is no judgement or disappointment at any stage, from them or me, so don't be afraid to contact them or to fill out the survey if you want to learn more. The more people that look into the process, the greater the chance is that I will find a compatible donor. My blood type is O positive but I can also participate in a chain donation if you want to donate and are not a direct match. My birthdate, May 25, 1979, is needed for the survey.
California Pacific Medical Center Donor Information Survey
For information about polycystic kidney disease and kidney donation, you can also visit the National Kidney Foundation website.
"Understanding Organ Donation" section of the National Kidney Foundation website
Other Ways to Provide Support
Other Ways to Provide Support
Register as an organ and tissue donor on your driver's license by going to a Department of Motor Vehicles office to sign up.
Share this page with people you know to help me search for a donor.
Provide financial support for my living donor through Go Fund Me . Transplant services and medical costs for my donor are covered by my insurance. Additional funds will help them with costs that are not covered by insurance like wage replacement for time taken off for testing and surgery, travel to the surgery center in San Francisco, food, and dependent care related to the donation. Funds will be disbursed through the hospital/transplant center to ensure accountability/legality.
My Background
My Background
Here's additional info about me in case you are curious. I grew up in Humboldt County and studied forestry at Humboldt State University. I met my husband Robert on the logging sports team. We live in El Dorado County, in the town of Cool, and have a son who is now studying forestry at Humboldt.
In college, I worked for the Forest Service, measuring fuels plots throughout region 5, and then I worked for the National Park Service at Redwood National Park, helping to thin Douglas fir and promote redwood in the park's second growth stands. For 15 years I worked as a grant administrator for the California Fire Safe Council nonprofit. I met many great people in those years. I did my best to observe and learn as much as possible, and be the best resource I could to the people around the state who were seeking grant support.
I have been lucky to see many parts of California, and meet the people who are managing the land and protecting their communities here. One of the first places that I visited was Prather/Auberry with the Hwy 168 Fire Safe Council. Their director, Pat, knew the whole community, places and people, and I so admire the work that she and many other people like her have done. That community knew it was at risk for a major fire and was profoundly affected when the Creek Fire burned 379,895 acres in 2020. Even though the fire was severe and extensive, there were no deaths, and the residents had prepared in many ways. After the fire, the local agencies formed a recovery collaborative to help the land and community heal. I was honored to be included in the sunset meeting of their collaborative and celebration of their work. They knew that they could make a difference and they did!
In 2022 I helped to found a nonprofit organization called Forest Resource Collaborative (FRC). The major goals of the organization are to bring more funding for resource management to the Georgetown Divide and to create more engagement within the community around forest management and wood utilization. Our board of directors are some of the first people that I met when I moved to the area, and they have been welcoming and committed friends and mentors. We have been able to bring funding to the area to protect the water system from wildfire, and are currently providing coordination for the El Dorado-Amador Prescribed Burn Association. FRC has also received grants from PG&E to complete preparation work for prescribed burns. As long as my health allows it, I will continue to support sustainable forested-community engagement.
Some people have asked why I am an Oregon Ducks fan, since I didn't attend U of O. When my uncle Ralph (from Oregon) passed away, I didn't think he would want the Ducks to have one less fan, so GO DUCKS!
Other favorite/random things about me:
Color: Red and Blue (can't decide)
Food: Cherry pie/Spaghetti/Hot dogs (with yellow mustard, onions, dill relish and saurkraut), Sourdough waffles
Sports: Stargazing, swimming, kayaking
Wild Animals: Cranes, Owls, Snakes, Armadillos
Dog or Cat: Cat
Hobby: Poetry
Song: "Love is our Cross to Bear" by John Gorka
Movie: The Arrival (I like how the aliens look like wet paper towels)
Favorite Weekend Activity: Talking with family on the porch, drinking iced tea or sangria, and listening to the forest birds
Regret: Not learning how to windsurf
If I ever win the lottery: I will create some fabulous campgrounds where the forest is well-managed and periodically burned!
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