I was recently diagnosed with Polycystic Kidney Disease. I’m opening up about my diagnosis and how it has affected my life and family.
About a year ago I was in San Diego with the Kia team for a press trip and I wasn’t feeling too hot. I was so excited about going on the trip that my health wasn’t a top priority at the time. On the trip, I really struggled to keep up with the rest of the crew. I was exhausted, thirsty all of the time, and out of breath from regular activities. When I got back, I made it a priority to head to the doctor for a normal physical to make sure everything was alright.
My doctor ran the regular routine blood tests and everything seemed normal, except for one thing. My kidney function.
The numbers from my blood test weren’t too alarming to my doctor but after I left her office I did something all doctors tell you not to do. I Googled. From a quick Google search, I learned that my numbers weren’t normal and that I should be concerned. After my thyroid scare last year and everything we had been through with Tristan, I no longer take health concerns lightly. I sought out a specialist against my doctors wishes and I’m glad I did.
What is Polycystic Kidney Disease?
Polycystic Kidney Disease is a genetic disorder that causes fluid-filled cysts to develop on your kidneys. It’s something that you’re born with, however most people don’t develop symptoms until they become adults. The cysts are non-cancerous but can cause your kidneys to grow to the size of a football, weighing about 30 pounds.
There are currently no cures for PKD. You can’t prevent or stop the cysts from growing.
At stage 3, your kidneys are functioning anywhere from 30-59%. Symptoms include fatigue, back pain, puffiness/swelling, loss of appetite, high blood pressure, and abdominal swelling.
How was I diagnosed?
Shortly after visiting the specialist and running more tests, I was diagnosed with Stage 3 Polycystic Kidney Disease. I had never heard of this disease before in my life and was completely in shock. To my knowledge it isn’t something that runs in my family but apparently it does because it’s a genetic disorder. I didn’t know of anyone else who had it. I have never had symptoms or at least so I thought.
At 18, I was diagnosed with high blood pressure. It was shocking for me because I had always been healthy up until then. Being diagnosed with high blood pressure was the first sign of my kidney disease, I just didn’t know it.
When I was diagnosed, it was a huge shock. I was in shock. It was something that I wasn’t quite sure how to deal with. Explaining my disease to my family was probably the hardest part of being diagnosed. Most family members thought I could just go out and get a new kidney. Others thought I could fix my problem with dialysis. Neither options are great and not a part of my treatment plan anytime soon.
With the proper care and diet, I can avoid dialysis all together.
Day to Day Life with PKD
I’m lucky enough to have minimal symptoms. My biggest symptoms are fatigue, high blood pressure, and using the bathroom all the time. Some days I experience abdominal swelling. On most days I can function normally but others the fatigue and the muscle weakness from my anemia is too strong to bear. Resting is really the only thing that I can do on the bad days.
Since I’ve been diagnosed I’ve had to make major changes with my eating habits. I’ve had to decrease the amount of meat-based protein I eat which was a real struggle for me in the beginning. Ultimately my doctor would like for me to transition to a full plant-based diet but that’s just not something I think that I can commit to at this point in my life. Instead I’ve been limiting my meat-based protein intake, increasing the amount of water I drink, and trying to be more active.
Some days I struggle more than others. My friends and family have seen this firsthand but I still think it’s something hard for them to understand. They don’t really understand what my body feels like. Between daily living and the quarterly doctor visits and blood draws, sometimes things tend to get overwhelming.
How I’m Coping
It took a lot of research and visits to specialists to really understand my disease. I’m still new to this journey and learning all that I can but after a year, I’m finally accepting my diagnosis and learning how to live with it. Therapy has helped me a lot with understanding my new life.
My husband has been my greatest support system, going with me to appointments and making sure I stick to my diet. I’m grateful for friends who have stuck by my side and checked on me through the toughest months.
I’m hopeful that with proper diet, exercise, and medical care I can live a long life with the kidneys that I have and not advance to Stage 4. Living with PKD hasn’t been easy but I’m determined to live a long, healthy life.
Photos by The Studio Magnolia