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Journey to a Transplant
Apr 25, 2021
Welcome to our site - Please visit the “Ways to Help” tab if you’re interested in signing up to be a living donor or in making a donation to the Children’s Organ Transplant Association (COTA) in honor of Danny to help with transplant related costs (Please do not donate directly to Caring Bridge).
For those of you who may not know us, we would like to share our story and our journey to Daniel’s kidney transplant.
In May 2016, we found out we were parents-to-be! We were so excited yet a bit nervous, considering it was our first. On our 20 week ultrasound, we found out that something was different with our baby. Doctors weren’t quite sure what it was, but they noticed that our baby’s kidneys were measuring a bit larger than normal. After a couple more ultrasounds and doctors appointments, we found out our son, Daniel, would be diagnosed with hydronephrosis. Hydronephrosis is the swelling of a kidney or both kidneys due to a build-up of urine. In Daniel’s case, he had posterior urethral valves (PUV). PUV are obstructive membranes or extra tissue that develops in the urethra causing the urine to collect and backflow through his ureters and back into his kidneys. Due to this issue, Daniel’s kidneys developed differently than a normal person. His left kidney took the brunt of the backflow and therefore grew very large and has very thin tissue. His right kidney did most of the work so did not grow at the correct rate causing the tissue to be thicker and the kidney to be smaller.
Despite all this news, the pregnancy went pretty well. Living in Pittsburgh, PA we were so lucky to receive some of the best medical care out there. Mom and baby Daniel were continuously monitored and eventually enduced. Daniel Robert George was born December 26, 2016.
Daniel was able to spend a couple of hours with us before he was taken to the NICU. On December 28, 2016, Daniel had surgery to remove the posterior urethral valves. Even though this surgery helped to correct the backflow, there was too much damage done to the kidneys and Daniel was diagnosed with Chronic Kidney Disease (CKD). We were first told that he would be put on dialysis within the first couple days of life, but we have been lucky enough to avoid that. Daniel has been living with CKD - Stage IV since he was a baby. We manage his CKD through a restricted diet, medicine, and monthly blood work and doctor’s appointments still knowing eventually Daniel will need a kidney transplant.
In the summer of 2020 we learned that Daniel’s kidney function was lessening and it was time to meet with the kidney transplant team at Children’s Hospital of Pittsburgh. Over the course of two full days, we met our new team of doctors, nurses, social workers, psychologists, pharmacists, and dietitians. Over the next year or so these people will care for us and help us on along our journey to transplantation.
During this introduction to our team and what transplantation entailed, we learned the options of different type of organ donation: deceased donors or living donors. Which brings us here.
You might be asking why has it took so long for us to create this website... well right after we met with our team in the summer, they decided Daniel would need a surgery to trim down his ureters and reimplant them into the bladder to ensure the backflow of urine was decreased. So due to this bump in the road, we have now come around to asking for help in search of a living kidney donor for Daniel.
We have decided to make our CaringBridge website our hub for updates, information on Daniel’s disease, living donation, and steps to how you or someone you know can become a living donor or to donate to Children's Organ Transplant Association (COTA) in honor of Daniel to assist with transplant related expenses.
We appreciate you reading our story and helping in any way you can!