There are certain days in our lives that will never be forgotten, either by choice or because the significance of them are burned into our memories. For me, Oct. 12 was one of those days. I was at California Pacific Medical Center in San Francisco getting an endoscopic retrograde cholangiopancreatogram (ERCP) performed. A tube with a camera was passed down my throat and dye was injected to highlight my bile ducts to try to find the mystery cause of my three sepsis episodes over the past year.
After waking up in the recovery room, Noah and I met my doctor in a separate area – a room I’ll never forget. It was small, there were no windows and it’s where I heard the words, “You have primary sclerosing cholangitis (PSC).” As with most things in life, Noah and I never imagine the worse and never expected it to be this.
That short time when the doctor was explaining my procedure results felt surreal. I had trouble believing the words he was saying – that I have a rare autoimmune disease, one in which there is no treatment or cure and that will continue to cause infections and lead to liver failure and the need for a liver transplant. What? How? Why? It felt like an awful nightmare.
I instantly thought of my PKD diagnosis as a child and how different it is to be diagnosed with a disease as an adult. Our whole viewpoint on life is different. We don’t feel invincible and we have a tight grasp on what matters and what we don’t want to lose.
After leaving the hospital, we drove past San Francisco’s famous “Painted Ladies,” the colorful Victorian and Edwardian houses and buildings. We parked our car, got out, walked up the grassy hill across the street from the vibrant architectural scene, and both laid down and held on tight to each other. I was hoping with each breath that all of this would go away or make more sense.
I sat up and grabbed my phone. I wanted to capture this poignant moment in our lives. I held my phone, turned the screen to selfie mode and snapped a picture. The sun was so gorgeous behind me. It made me smile. I thought no matter what news the day brought, there was still light to be seen and enjoyed.
There is no easy way to digest and face a new diagnosis like PSC or PKD. I know I’m still in the denial phase and that it will, unfortunately, feel more real as time progresses. I thought PKD was my life’s big mountain to climb. I’m being reminded of the importance to give myself time, space and compassion. To not dwell on the diagnosis, but make sure I am being honest with myself and my emotions. This has reminded me once again how precious every single day is.
What do you remember from the day you were diagnosed with PKD and how did you deal with your diagnosis?