Welcome to the wait

If you have found this blog, you must have a little bit of a clue about what Polycystic Kidney Disease (PKD) is, so I won't go into the details at this point. However, I reserve the right to change my mind on this later. I strongly encourage everyone to visit the PKD Foundation website to keep up to date on the latest in PKD news and research.

My name is Veronica and I am one of the 12.5 million people worldwide who battle PKD every day. Welcome to my little piece of the World Wide Web that I share with my friend Christine and the occasional guest. The goal is to give you information, make you laugh, and have you realize that you are not alone in your struggle to understand this disease. Here's my story:

My Grandma was the first in our family to have PKD. She was, for lack of a better word, a mutant. Grandma passed away when I was in 7th grade. I remember her spending hours hooked up to a HUGE machine in her bedroom. She eventually graduated to peritoneal dialysis, which allowed her to remain closer to the family action while dialyzing. Grandma & Grandpa have 7 children, so the house was always bubbling over with activity. To my knowledge, 3 of their 7 children have PKD as well. Some of my Uncles have not been tested because they just don't want to know. I know that at least 1 of them is PKD free because he donated a kidney to another of my Uncles!! My Aunt is currently going through the process to (hopefully!) find a compatible donor. This brings us to the other PKD child of Grandma's. My Mom. Mom is the oldest of the 7.

My Mom had a successful cadaveric transplant 3 years ago. Prior to that, she had been on peritoneal dialysis. Mom & Dad have 6 children (all girls & I am the oldest) and 4 of us have PKD. While we are fairly certain that it is only 4 of us, we can't yet rule out my youngest sister having PKD. Until testing clear at age 30, you aren't given a free pass. She has 3 years to go.

I have known about my PKD status since I was very young. Until I hit high school, I really didn't have any difficulty that I know of. Even then my only problem was a higher than normal number of urinary tract infections. There were a few years that I was on antibiotics more often than not. That part seems to be fairly well controlled now, but chronic pain has taken its place. For about 10 years now, I have been in constant pain. I'm not talking about it feeling like constant pain...I'm talking NEVER. WITHOUT. PAIN. At all. 24/7/365 (sometimes 366!) Some days are worse than others. There have been many missed days at work and missed sporting events for my girls. Of course, there were also plenty of times that I went about my normal life when I shouldn't have...some people tell me I'm a bit stubborn at times. Shocking, I know! Trying to work around the pain is at times quite problematic. Tylenol only does so much. I have gone through trial and error with many different narcotics over the years. Some worked, some didn't. And let's not forget the ones that didn't work for the pain but I didn't care because I was in LaLa Land. Those got flushed very quickly. I am now finally on a regimen that has me feeling less pain than I have in years. It's amazing!!

Unfortunately, my story with PKD does not end with me. Remember, this is a dominant genetic disease and I have two lovely daughters. V is 15 and K is 13. When V was younger, we decided to have her undergo an ultrasound. At that point (I think she was 3 when we did this) she was found to be clear. WHEW! It is now in her medical chart that she DOES NOT HAVE PKD!! YAY!!

K, on the other hand, was not so lucky. While we didn't seek testing for her, PKD was discovered while undergoing other tests. Beginning when she was about 6 1/2, she was having some digestive issues--or so we thought at the time. Without going into too many details, I will tell you that she underwent many, many, many invasive tests over the next 2 years that ended with a diagnosis of epilepsy. One of those tests was an abdominal ultrasound. While the tech was going over the different organs, I noticed those oh so familiar spots on her kidneys. I knew what I was looking at and asked the tech to go back. She did what I asked but told me that it was absolutely nothing at all to worry about. Uh, yeah. OK. When the radiology report came back, the notes read "Numerous cysts are present on both kidneys. Not consistent with PKD.". REALLY?!? With the family history? The gastroenterologist read that, looked at me and reminded me that this was in her records. She DOES NOT HAVE PKD!! But he also told me that I knew what I saw. Leave it in her records and treat her accordingly. When she was 10, I saw a drug study opening up for children with PKD. I called, told my family history, asked some questions and told the study doctor about the ultrasound. She asked me to send her the radiology report. Diagnosis confirmed. I was told "The radiologist who read these was off their game. Your daughter most definitely has PKD." K decided to join the study and was the first child to sign up. At 10 years old, she made the decision to help 12.5 million people!! She has one final trip to make next summer for the end of her part in the study. Then we wait.

Wait to see if the study is helpful. Wait to see if K stays healthy. Wait for a treatment of any kind. Wait to see if V develops PKD. Wait to see if a 5th sister joins our PKD "club". Wait for a drug study that will accept ME. Wait for my Aunt to receive her transplant. But mostly we wait for a cure. PKD is a lot of waiting. And it sucks!!