Thursday, November 12, 2009
A treatment is defined as care provided to improve a situation--especially medical procedures or applications that are intended to relieve illness or injury. Dialysis is used as a treatment for kidney failure. Transplant is yet another step in treating kidney failure.
PKD is NOT kidney failure. It is a genetic disorder characterized by the growth of numerous cysts in the kidneys. These cysts continue to grow and eventually shut the kidneys down. Kidney stones, frequent infections, cyst ruptures, extreme pain, high blood pressure. These are just some of the symptoms of PKD that we endure long before the symptom of kidney failure is severe enough to merit dialysis or transplant. My thoughts dictate that a true treatment would take care of the cysts causing the eventual problem of kidney failure.
I can't look my 13 year old daughter in the eye and tell her that she inherited this awful disease from me, but that in 35 years she'll have the option of dialysis as a treatment. I can look her in the eyes and tell her that her participation in the drug study she's in will hopefully help. That there is research going on to find a treatment. That the time spent working for the PKD Foundation raises the money to fund research for a cure. That I pray she doesn't endure the pain I do.
A treatment would allow me to not have to ask my sister for one of her healthy kidneys. Dialysis and transplants are treatments for kidney failure; NOT for PKD. PKD is more complicated than that. There are years of uncertainty leading up to the point of failure. I can't live my life thinking, "Well, dialysis is a treatment, so I'll just wait until my kidneys fail." I live my life thinking, "What can I do NOW to improve my life? What can I do NOW to avoid dialysis?"
Take it or leave it, that's how I feel. I will continue my fight for a better life. I will campaign for a cure, but will settle for a treatment. If not for me, at least for my daughter. She deserves it. She has put herself out there for 12.5 million of us PKD'ers! Let HER be able to tell her children that there's nothing to worry about.
Saturday, October 31, 2009
It sucks to be in pain, it sucks to watch those you care most about live with chronic pain, it sucks to feel tired and ill all the time, it sucks to be saddled with a 'genetic' situation, it sucks to fear for your children's health and well being, it sucks to worry about passing along a tainted gene onto future generations, it sucks to be in the care of doctors who may know as much or even less than you do about your disease, it sucks to watch your waistline mysteriously expand, it sucks to have cyst bleeds, it sucks to have chronic kidney infections and/or kidney stones, it sucks to be unable to obtain life insurance or adequate health insurance, it sucks to be to be diagnosed with a disease that you have never heard of before, it sucks to find out you have a life-threatening disease for which there is no treatment or cure, it sucks to think that your kidneys may fail and you will either have to be tethered to a dialysis machine forever or receive a life saving kidney transplant, it sucks to know that there are not enough kidneys to help those needing one, it sucks to not know when your kidneys might fail, it sucks to live with the fact that your kidneys might fail when you're too old to receive a kidney transplant, it sucks to feel frustrated and helpless all the time, it sucks to not have major financial support for critically needed research.....
Yes, I think you have to agree....it sucks to have PKD.
Thursday, October 29, 2009
- M & I are both working that day--how are we going to get her there?
- K will be gone to her cousins' house for the weekend.
- I need to call her Aunt & Uncle to remind them of her medicine schedule. (PKD Study meds every morning & anti-seizure meds morning & night)
- I forgot to fill her pill case last night. Oops! I forgot to fill mine, too!
- Dang! I didn't put a new pain patch on after I got out of the shower....I sure hope I have some pain pills in my purse. (I do!)
- Dang! I forgot to take my meds this morning. Uh-oh!! Did K take hers?
- We haven't yet logged her BP's for the month. Better get that done tonight.
Once I realized that the possibility was there that K forgot her pills, I called her. Sure enough. She hadn't taken them with her to her Aunt's house this morning. What to do?? I called M for help and he said he could run home to get them for her. (Have I mentioned how much I love living in a small town where work, schools & home are less than 10 minutes apart?!?) Since her pill case wasn't filled, he called to ask what to do. "Where are her pills? Her case is empty."
To which I replied "With the other pills."
"What does she take in the morning?"
"A whole Pravastatin. A whole Lamictal. And half of a Lisinopril. The pill splitter is right there if you need it."
"Thanks. You need to fill this case tonight."
I didn't have the heart to ask him to grab my meds. I'll just take them when I get home. :o)
Just think....all of that came from V telling me about a scheduled drive. I wonder what else the day holds???? So, we're just a normal family, right? We just happen to have some extra issues to deal with. Every family has their "something". It's all in how you deal with it. Today made me realize that all members of our household need to know what meds are taken when and who takes what. There are many ways that PKD can rear its ugly head. I would hate to end up in the hospital with a major complication and not have M & V know what to do. Both for me and for K. I carry our medical info in my planner...but I don't have it written down at home. I guess this is something I just can't wait for. Just do it! FLYlady Control Journal, here I come. Sis, I hope you're happy!!
Wednesday, October 28, 2009
Saturday, October 24, 2009
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!!