It was several years after my transplant as I sat in a lecture at Johns Hopkins University School of Medicine with a room full of med students. I looked up at the overhead projector and saw the MRI of my kidneys before they were removed. My nephrologist, Dr. Watnick, told her class that these were my kidneys. She went into detail of their massive size, the overwhelming amount of cysts I had and that they were functioning 60% when I had my bilateral nephrectomy.
Before I rose to speak to the students, as their guest lecturer, I scanned the room and observed the astonished reactions of the young med students as they listened to Dr. Watnick document my medical statistics. I thought how young they all were. That in the future they would be doctors to patients like myself. How they were healthy. Had their whole life ahead of them. I pondered on what I was battling when I was their age. How I had to drop out of college because of PKD.
It is hard to digest that my kidneys were working 60%, but needed to be removed to save my life. My main issue and the ultimate demise of my kidneys were cyst bleeds. I was in and out of the hospital during middle school and high school because of bleeds. I couldn’t play sports or be jolted around for fear of another rupture. I missed the first half of my senior year because of this.
There are two incidents in high school that stand out in my mind. I was fifteen and we were headed down to Myrtle Beach, South Carolina, for a family vacation. It was a long car ride and I started to get kidney pain. I tried not to think about it in hopes it would subside. I surely did not want to tell my parents and ruin our trip. Although all along, I knew I was experiencing a cyst bleed. By the time we got out of the car in Myrtle Beach, the pain was unbearable. I remember sitting in the hotel room not wanting to say anything. I finally had to give in. I told my parents. We went right to the hospital where I stayed for a few days. I was too sick to ride home in a car, so I had to be flown back to PA in a medical airplane. I felt awful and obviously ruined that vacation for everyone.
Since I couldn’t play sports, I thought I would try out for a school play. I landed the part of Mayor’s Wife in “Bye Bye Birdie.” During one scene, I had to pretend to faint. I did this on the night of the show, and the next day had a cyst bleed due to the light impact of the fall.
The start of my 11-month hospital stay when I was 18 and 19 began with a crippling painful cyst bleed that never stopped. I had over 70 blood transfusions to compensate for all that I had lost from bleeds. I remember peeing blood more than not. I would always remain hopeful. After I would pee, I would stand up and look in hopes to see a normal color. A glimmer of hope was all I wanted but it was never there. It was always red. They tried different procedures like cyst draining and nothing worked. They knew that if they did not remove my kidneys it would be the death of me. That’s the bloody truth!
As I tuned back in to the lecture, I was so happy those days were behind me. I was thankful that all of the students were eager to learn about PKD. They really enjoyed having me there to answer their questions and to share my story. When I lived in Pennsylvania, I was invited to take part in this lecture several years in a row. It was a miraculous and beautiful thing to return to the hospital that saved my life to share my first-hand knowledge with med students. It was an honor. An honor I would have never had if it weren’t for PKD.