As time passed, the pain intensified in my lower back. I winced with pain at every imperfection in the road’s pavement. I was a teenager and my family and I were headed to Myrtle Beach, South Carolina, for a family vacation. It was a nine-hour drive from Pennsylvania to our rented condo in Myrtle Beach. I was sitting in the back seat, well aware of what was causing my pain. I was diagnosed with PKD at the age of 10 and quite familiar with cyst bleeds. I knew the long car ride was irritating my enlarged kidneys. I did not tell my parents how I felt, in hopes that it would subside once we arrived at the beach.
Without any intention, I was the child that always got sick on vacation. I don’t know how it happened, but it was like clockwork. I would either have a cold, the flu, or in this case, cyst bleeds. I did not want to do this to my family again. Plus, I was really looking forward to our trip. I remember arriving at Myrtle Beach in excruciating pain. I kept hoping it would pass. I walked into our condo, sat on the couch and it was not long before my parents knew something was wrong. I can’t hide anything and by the look on my face, they knew it was not good. I told my parents that I had kidney pain, thought a cyst had ruptured and that I would be fine. My symptoms deteriorated quickly and we found ourselves headed to the local hospital.
My horrific kidney pain was coupled with blood in my urine and a fever. The bleeding would not stop and I spent our entire vacation in the Myrtle Beach hospital. I was too ill to handle the car ride home and had to be flown home on a medical airplane. I do not remember much of the flight. Just that the plane was very tiny and there was only room for me and my mom and the medical person taking care of me. I outdid myself that trip. This was not the first or the last time that cyst bleeds put a halt to my plans, my day or even months of my life.
Cyst bleeds prevented me from playing contact sports and participating in a lot of gym class activities. Once, they occurred while acting out a role in a school play, where I had to pretend to faint. Ruptures happened sporadically and led to hospital stays countless times. I missed the first half of my senior year in high school due to cyst bleeds. I had cyst-draining procedures performed, but nothing helped. Bleeds wound up being the ultimate demise of my kidneys. My doctors chose to remove my kidneys when the organs were working 60 percent, because my cysts would not stop bleeding. There were an endless amount of times in my life that I anxiously awaited to look at my urine in hopes that it would be yellow and not red.
I am thankful my kidneys were removed and I no longer have to endure this complication of PKD, thanks to a life-saving transplant. We never know how our kidneys are going to react. For instance, my mom has PKD but has never had a cyst bleed. We can’t predict our future, and must enjoy our healthy days, get out and live our lives fully, stay strong and with a positive frame of mind. No matter what path PKD presents for us, we must keep moving forward, whether it is on a bumpy car ride or a smooth medical plane ride.
I have never met a PKD patient that has had as many cyst bleeding issues as I have. I would love to hear from you and your experience with cyst bleeds.