I was eight years old when I got really sick. I remember my mom telling the story like this:
It was the spring and soccer season was starting. I would complain to my mom that I was tired and in pain. She thought I was out of shape.
It took other symptoms, such as purpura blotches appearing on my skin for us to realize something was terribly wrong. I was so sick that I wasn't even able to attend a full day of school. My grandparents had moved in to help take care of me. We started doing multiple tests and working with the doctors to figure out what was happening to me. It wasn’t until we received the results of a urine test, that the doctors knew it was my kidneys.
My mom and I had to drive 5 hours to Oregon Health Sciences University (OHSU) to do a biopsy. I grew up in small rural town in Oregon and they did not have the speciality care that I needed. I had to see a pediatric nephrologist, a children's kidney doctor.
The biopsy showed I was suffering from Microscopic polyarthritis (it has since been renamed to Microscopic polyangitis).
Microscopic polyangitis is rare autoimmune disease that attacks your kidneys or liver. It usually strikes in your mid-thirties and forties. At eight, I was the youngest person to be diagnosed with the disease.
What followed my diagnosis was a blood transfusion and a one week hospital stay at OHSU. During this stay, my mom and I learned that this disease would impact me for the rest of my life.
Over the next couple of months, a lot changed. Mostly, I remember the side effects of the medication that I was taking. Prednisone caused my face to swell, particularly my cheeks. At school, kids would call me chipmunk cheeks and I was embarrassed by how big I had become. I was just trying to finish third grade and be as normal as possible.
By September of that same year, my kidneys would succumb to my disease. My mom showed me both hands, fingers extended. "Ten fingers is a healthy kidney. You're at a one." I had no choice but to start dialysis.
As soon as I was put on dialysis, we started looking for a kidney donor. As it turned out, my mom, close family members, and close friends were all incompatible matches. I had to be placed on the organ transplant list.
Peritoneal dialysis allowed me to live the most normal life possible for a 9-year-old. Every night, I would hook up a to machine in my bedroom. Dialysis did not limit my abilities to do things. I ran track, I had the occasional sleepover, and I swam in pools (only - lakes, hot tubs, rivers, etc. had too high a risk for bacterial infection). My mom did the best she could to make sure I was capable of doing anything I wanted.
I was doing well on dialysis, however, I kept loosing weight. The tube for dialysis was against my stomach, making it difficult to eat normal portions. Whenever I ate food, the tube would give my stomach the impression that it was full.
When I was ten, we had an appointment at the dialysis clinic to talk about inserting a feeding button into my abdomen to help me gain weight. Since I was really anxious, my mom and I decided to fly and rent a car. A five hour car ride seemed like too much.
After the plane ride, we arrived at the rental car place. We were greeted by a lady asking, "Are you Alysia's Mom?" Puzzled my mom responded, "Yes?" Apparently, the transplant team had been trying to get a hold of us, but could not because we were on the plane. We were told to call the hospital immediately. It seemed that the they might have found me a kidney!
After getting a hold of the transplant team, my mom and I nixed our dialysis appointment and headed straight to the hospital. We met with doctors and ran tests to see if the kidney from the deceased donor would be compatible.
The doctors recommended that my mom take me somewhere fun to distract me while we waited for results. She took me to the Oregon Zoo for the first time.
They called us that afternoon and the kidney was for me! It was on October 21st, 1998 that I received my gift of life, my kidney.
I was ten years old.
My Story Today
In 2011, I got really ill. It was then the doctors told me I would need a kidney transplant again.
In the summer of 2015, reality finally hit. My bloodwork indicated it was time to begin the process of evaluation for a transplant.
Before you get listed, you are tested extensively to see if you are a good transplant candidate. After three months and what felt like hundreds of tests, I was put on the list. I started the listing process in July and was finally active on the waitlist in October.
There are currently more than 100,000 people waiting for a kidney transplant. One of the largest determiners of transplant compatibility is blood type. Where I live and with my blood type (A+), the wait is an average of 2-3 years.
The only way I can receive a kidney transplant sooner is from a living donor. Transplants from living donors also last longer than transplants from deceased donors.
I keep being asked, "Do you have a living donor?" I keep having to answer ,"no."
I try not to get my hopes up. Even though I've had people come forward who are willing to be living donors, nothing has come of it.
In July 2015, my kidney's function deteriorated to the point that I need to start dialysis again. In June 2016, I had my catheter placed in my stomach for Peritoneal dialysis and I started training at the beginning of July. I'll be doing dialysis at home. I'm very grateful for this. It will allow me for freedom to live a somewhat normal life.
My goal with telling my story is to educate people about chronic kidney disease, kidney transplantation, and hopefully find a living donor.
I've been able to live my life to the fullest because of my kidney transplant. Since being listed and starting dialysis, I feel like my life has been put on hold.
I am looking for a living donor because my family cannot donate to me. If this was an option, they would have done so 18 years ago.