I was diagnosed with PKD and PLD in 2001, and three months later my sister was diagnosed. My sister, brother, and I inherited PKD from our mother, who never knew she had PKD. She died from complications after brain aneurysm surgery in 1986.
Polycystic liver disease (PLD) is a complication of PKD which severely impacted my life with chronic pain, a deformed spine, and an inability to bend. I was unable to participate in activities with my family, and it was hard to find clothing. I participate in two PLD clinical studies which gave me relief. Also, I had 13 cyst aspiration sclerosis surgeries.
On May 28, 2016, I became septic and my organs were shutting down. The doctors were able to turn my life around with a cocktail of IV antibiotics, plasma, and fluids. A few days later, I developed encephalopathy, a brain disease. I had a 33% chance of surviving, 33% chance of brain damage, and 33% chance of death. I’m so lucky to be alive without brain damage.
During the onset of encephalopathy, I put on over 65 pounds of fluid (edema) within a few days. The doctors said I would become septic again and needed a liver transplant. The doctors thought the edema wouldn’t go away until after a liver transplant. I needed 24-hour care in the hospital (21 days total) and at-home until the end of July when the edema was down enough and I was stronger.
On August 11, 2016, I received a liver transplant. My life has forever changed. I’m thankful to the donor’s family for the gift they gave me.