When I hear “Polycystic Kidney Disease” it’s hard to fight back the tears. I have Polycystic Kidney Disease and most people don't know that about me. PKD and I have a love-hate relationship. On one hand it affects my day-to-day life. I can feel strong, happy, and like a normal 21-year-old one-day and then the next day it’s almost impossible to find the strength to get out of bed. In addition to physically, this disease can quietly cause depression, anxiety, and isolation without even noticing. It’s a physical and emotional fight every day. On the other hand, I wouldn’t be the person I am today without PKD. I have learned and understand more about myself, who I am as a person, who I want to be, and what I want in life than the normal 21-year-old.
My family’s relationship with PKD goes way back on my dad’s side. A person with PKD runs a 50% chance that each of their children could also inherit the disease. My dad is one of five kids and one of two who inherited the disease. My Uncle Bill passed away not long after finally receiving a kidney transplant.
I am the youngest of three (by far) and the only one to have been diagnosed with PKD so far.
The disease can develop later in life or a person can have the PKD but just not experience any symptoms. The #1 rule with PKD is to not seek out a diagnosis unless you begin to experience symptoms, which is why most people with PKD are not diagnosed until their late 30’s or 40’s.
My story is different.
I was diagnosed with PKD the spring semester of my junior year of high school, at age 17. I was so weak and in so much pain that I didn’t go to school for 4 weeks. I spent those weeks seeing different doctors, which all came back with nothing. One tried to tell us I was faking it just because of friend issues at school. Well no? It got so bad that my dad finally took me to the emergency room.
My dad and I watched the movie Holes while we waited for test after test to come back. The nurses did everything they could to treat my pain. Finally they came back and asked my dad if any kidney disease ran in our family. I watched my dad’s face go white and we both knew right away what this meant. I immediately was rushed down to get an ultrasound of my kidneys to see if I may have had Kidney Stones, but my dad and I knew what they really were going to find.
They found enlarged kidneys, multiple cysts, and evidence that one or more of those cysts had ruptured, which explained the pain and illness I was experiencing. When we returned to my room my mom was there waiting for us and the nurse came in to give us the results.
Polycystic Kidney Disease.
We hugged and we cried, but the one thing I remember most from that day was when the nurse said, “You’re going to beat this thing and I know this because you told me your pain was a level 5 when it was actually a level 8."
The nurse was wrong that day. I’m going to beat this thing because I’ve watched my dad beat this thing my entire life. My dad has been through the dialysis and the transplant and all the little and big things in between. This past winter I watched my dad fight for his life in the ICU and make an amazing recovery in just three months. The doctors were shocked and said they’ve never seen anything like it at his age, but they didn’t know my dad’s strength like I did. My dad is my hero, my role model, my inspiration, and luckily I get most of my traits from him (humor, road rage, and the love for a glass of white wine with two ice cubes).
My dad is the reason I will beat PKD.
Currently, there is no treatment and no cure for Polycystic Kidney Disease. A lot of research is in the works. After last appointment with my kidney doctor this past June, he informed us that the drug Tolvaptan is currently under clinical studies to be approved my the FDA in the next year. This drug is already approved and used to treat PKD in Europe, Canada, and Japan. My doctor predicts that by next summer, assuming the FDA approves the drug, I should be eligible to use Tolvaptan to slow down the growth of my kidneys’ size and the decrease in my kidney function that PKD causes. The long-term impact would mean no dialysis and no transplant needed.
There are currently half a dozen other drugs in the early research phases. The research for these types of drugs would not be possible without the PKD Foundation. I have participated in the St. Louis Walk for PKD and this fall on October 21 I will be participating in the North Texas Walk for PKD. Please join me in the fight to end PKD for my family and all those who have been impacted by this awful disease by donating through the link below! Thank you all for your support over the years!