Today we’d like to introduce you to Jeannie Baker Brown.
Hi Jeannie, we’d love for you to start by introducing yourself.
I once spoke to a man who told me that you learn new things every single day. He also told me that it may be something you want to know or not. Regardless, you learn.
In 1988, at 21 years old, I was diagnosed with Polycystic Kidney Disease. I had been urinating blood for a week and knew what the diagnoses would be before the words were spoken. I was devastated. PKD was a death sentence. There was no cure for PKD.
I am the 7th generation of my family to have Polycystic Kidney Disease, and I thought I knew everything about PKD.
My grandmother and great grandfather had died of PKD and it’s complications. I had spent my young life watching my mother’s struggles and her fear of the future. PKD is a genetic disease that causes kidney failure when cysts grow and multiply causing the kidneys to fail the disease affects the entire body from aneurysms, bleeding from the kidneys, infections, anemia, liver, spleen and other organs grow and cause other medical conditions. Dialysis and transplantation are treatments, not cures. One medication is FDA approved for treatment but can cause liver failure and serious side effects. Polycystic Disease is a progressive disease. I have PKD 1 gene, which is faster progression and most of the medical side effects occur with those patients.
My family rarely spoke of PKD. No one we knew had it. It was like a secret that would not be told. We knew nobody with PKD. People felt sorry for us. And that is what made me want to learn all I could and tell anyone I knew about what PKD was doing to my family. After I was diagnosed, I started educating my family first. There was little known about the disease at the time.
I married and my daughter was born 4 years later. I had studied over those years what was available on PKD but never guessed that my child would be affected. At 5 years old my daughter, urinating blood with a kidney infection, was diagnosed with PKD. I felt to blame. I caused the disease but was unaware that each child had a 50-50 chance of having it.
Infections, bleeding, headaches, growing kidneys, backaches, anemia, and severe low white blood count plagued me. I learned very quickly that I was strong and determined and I was going to help find a cure. The Polycystic Kidney Disease Foundation was a wealth of information. The Doctors and staff wanted what my dream had become…to find a cure. I did not want my daughter to suffer as I was. I read encyclopedias, medical journals, books, magazines, anything I could find to futher my quest. There was so little information, but I absorbed everything I could.
Then all came crashing down. I had a brain aneurysm and needed surgery. I sat in the hospital with no words. PKD reared its ugly head with its complications. I had the first emergency surgery. My life changed in an instant. Two years later, after learning to walk by myself, see, drive, and function day to day, I was so thankful the aneurysm had been found. I was still here. Shaved head, bruises, swelling and all.
Do not get me wrong, I had very bad days, but I had faith.
I have 4 aneurysms in total now. Three surgeries and 1 that is being watched.
In 2016 while working with a group studying kidney genome, my daughter, pregnant with my youngest granddaughter, was diagnosed in vitro with Polycystic Kidney Disease. We saw a geneticist to learn more about the future of research. I knew more about PKD than the doctor knew. I decided that my granddaughter would not go through what I had been through. My work in Advocacy started the day Aria was diagnosed.
PKD seem to want to test me. Over the years as, each medical issue was dealt with, my kidneys were getting worse. I was always waiting for the biggest ball to drop. It did. I went into kidney failure. I went on emergency dialysis and was absolutely broken. Four years of dying a little every single day. The thankfulness of dialysis was mingled in those days, but it was horrific to me. Headaches, getting stuck with massive needles that literally take your entire blood supply out, clean it the best the machine can, and then putting it back in. Allergy to the filter, blood pressure always too high or low, always freezing cold, special diets and special medicines, tired all the time, fear of not making it through treatment and dying while tied to hoses and tubes stuck in that chair. PKD again has no cure, so I waited for the elusive kidney transplant. I was waiting on the transplant waitlist approximately 4 years.
My native kidneys were estimated to weigh 20 lbs. because of PKD cysts.
On December 20th, 2018, I received my deceased donor kidney. His name is Clyde.
The doctors removed the diseased kidneys that were 20lbs and did spleen and liver surgery.
Through all that was occurring, I could not sit back and not be an active participate in my life, I went to work and began to study the research that being done and questioned everything and anyone who could give me real life examples.
I follow with various groups, The PKD Foundation, Transplant Warriors & Heroes of the Upstate, PKD Support Group and others with the hope to help transplant patients, no matter the disease. I advocate for PKD patients. There are only approximately 600,000 of us. PKD is listed as a rare disease. I speak to Congressmen on Capitol Hill to advocate for bills to become laws. Bill’s like the Living Donor Protection Act. I speak to Senators in reference to research funding under the CDMRP. I advocate for the PKD Cares Act that is the first ever bill to be introduced into Congress that specifically focused on Polycystic Kidney Disease. I am so thankful to be able to participate in all I do. I will always answer the phone for a question on how to possibly get lower price medication, on how to contact a Representative, or just listen when someone is having a rough day.
I am retired now, but I am much busier than I was before!
I spread hope and education to those who are lost in the sea of unknowns. I was lucky to know what Polycystic Kidney Disease was and how important that it was to be an advocate for yourself. I have authored and co-authored two Letters to the Editor about the need for living donors and teaching patients that they are more than their disease.
In 2024 and 2025, Mayor Lisa Talbert signed a Proclamation to recognize September 4th PKD Awareness Day in Easley, SC. In 2025, another was signed for the entire month of September.
Life and Polycystic kidney disease goes on. Those side effects, symptoms and conditions that you can have with PKD continue to happen.
In July 2025, I began having serious problems with my liver. The size of it was causing severe function issues.
On September 3, 2025, I drove my little red car around Easley and Greenville, SC with signs on both doors, balloons covering it, to celebrate PKD Awareness Day for the month of September. I received a liver transplant that next morning. The diseased liver weighed 14.5 lbs. The liver and the kidney compete for what they need. One likes sweets, the other does not. Each work well and I am so very blessed to have been given the gifts I have. Their families will never know what their gifts have done for me. I take care of myself and never take for granted the loss they have had. I have not named the liver yet because nothing seems to be perfect. Clyde is named for my Daddy’s love for made-up songs.
Each time a ball drops, I get up and face what I must. My mother always told me to get up, get dressed and live life. I do that every day and I learn. Even if I just change into clean pajamas and mascara. My daughter and granddaughter are PKD warriors. Each have their on set of issues but are strong and fierce in the fight. I will continue to advocate for laws, research, education and hope that we need to find the Cure for PKD.
Clyde and my liver are my inspiration to live day to day and moment to moment in joy and kindness. They gave me a second chance at this life and I will inspire others to be a guiding light for others.
Appreciate you sharing that. What else should we know about what you do?
I was one out of six female law enforcement officers in a department filled with males. I had a Criminal Justice degree and worked the worst parts of the area. I was 30 years old and fulfilling a dream of being in law enforcement. I was on the streets making a real difference.
The first aneurysm was found on a hot July day the day after a stressful shift. I was angry and sad but determined to get the surgery and get well.
I had never told anyone that I had PKD. I did not want to appear weak. My plan was to return to work. There were many complications from that surgery. I did get better but could not see well and my muscles on one side were very week. After all the symptoms, struggles and illness I chose to hide, I had fought my way through the pain of PKD. There was no more hiding. I retired. Heartbroken and lost were my words at the time. My career was who I was. I took me many years to find the new me in my new career that was just called life.
How can people work with you, collaborate with you or support you?
I am always available to tell my story. It changes and evolves and sometimes it grows! I love to advocate for those who are in need of help in any way. I am a shoulder to cry on or to have a laugh with! I had so many questions about Polycystic kidney disease, even though I thought I knew everything. Apparently I do not, but I will find an answer if I do not know. I have co-authored letters to the editor to teach how to support organ donation and ask that people come forward as living donors.
My dream is that a cure can be found for PKD. For my family, all 600,000. My story is about pain, weariness, and sickness but it is full of kindness, healing and hope.
My contact information is brown4973@yahoo.com
Jeannie Baker Brown
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