About two months after I had her, during a post delivery checkup, my doctor and I decided to do an ultra sound just to make sure everything was okay. It was during that ultrasound when we discovered there were a plethora of cysts on my kidneys happily frolicking about.
I was 26 years old, had just had a baby, another one at home and was just told I have a disease that could kill me.
*blank stare* Thanks, Dad. You're the BEST! lol
Over the years, I have been very lucky that my creatinine level has remained steady at a 1.4. It becomes Defcon 1 when it reaches 6.0 and means I've begun to go into renal failure.
I'll be going to the doctor in a few weeks for my annual checkup and I pray that it hasn't gone up. A lot has happened in my life in the last year, even more so in the last few weeks, that can effect the function of my kidneys. Although I handle stress better than most people (I'm a pretty laid back girl), it does not help this disease and blood pressure plays a HUGE part in that. It's a vicious cycle. High blood pressure can cause kidney function problems and when you already have kidney disease, high blood pressure can increase the damage already present in the kidneys, which in turn can cause heart enlargement and heart failure. Let me just take a short minute to explain how this greatly affects me.
I know absolutely nothing about my Mother's medical history, nor her family's. I take after my Father physically which helps to shed light on some things. PKD is a genetic disease. There are several members of my extended family who have it. I am the only one out of 3 girls that inherited this disease. One or both of my children may get it. If they by miracle don't, then the disease dies with me and their children, should they have any, will be spared.
I pray every day this disease dies with me.
But I have no intention of dying any time soon. It may help some understand why I have the disposition that I do. Why I try, EVERY day to see the good. Why I refuse to not be fully in the present moment, as good or as bad as they may be. Why I travel as often as I do, while I can. Before I'm on a dialysis machine 12 hours a week and can't. It is SO important to me to show my children that life is meant to be lived, and that what we do, how we give and love that FAR outweigh ANYthing else. Our connections with people. THOSE are what matters. I want to make a difference in someone's life. I want to continue to give as much as I can to this world because for me to leave it without adding happiness to it is, to me, a waste of this soul I posses.
Most days, I feel pretty good. There are days when I am ridiculously tired, when one of my kidneys makes this disease present and accounted for. Nights when I am curled up in a fetal position hoping that the heating pad on my left side will ease the pain. However, you will never know it. One of my Assistant Managers (who has medical knowledge) said the other day when he found out, "You do?! You are the most upbeat, positive person I know who has it! Most people who have it are constantly sluggish, and tired all the time. You never stop MOVING!" I had no intention of telling him I had the disease, but after about the third time he asked if I wanted any coffee and I explained that - while I do so love coffee - I have to limit my daily caffeine intake. He asked the next obvious question, so I told him.
I do not believe in self pity and I do not choose to burden others. Ever. This applies to everyone in my life. It doesn't matter how close to me they are, or how much they know/don't know about me. People have their own lives to lead, their own demons to deal with, and I refuse to add to their darkness. I choose instead, to always be a light. If that makes me selfish, then so be it. Nor do I wish it to effect how people treat me at work. I am fully capable of doing the job I was hired to do, with or without my kidneys enlarging to the size of footballs. Not kidding.
I do not believe in self pity and I do not choose to burden others. Ever. This applies to everyone in my life. It doesn't matter how close to me they are, or how much they know/don't know about me. People have their own lives to lead, their own demons to deal with, and I refuse to add to their darkness. I choose instead, to always be a light. If that makes me selfish, then so be it. Nor do I wish it to effect how people treat me at work. I am fully capable of doing the job I was hired to do, with or without my kidneys enlarging to the size of footballs. Not kidding.
This disease has no cure. Only treatment. Diet, dialysis, transplants. These are all treatments. NOT cures. It is inevitable that my... kidneys... will...fail. I hope to hell that doesn't happen any time soon. I'm a stubborn soul, born of stubborn stock. I rarely ask for help, choosing instead to handle things on my own. If I ever ask anything of anyone, it means it's important enough for me to set my pride aside.
So, I humbly ask you this...
Please educate yourself about this Polycystic Kidney Disease, donate to the PKD Foundation as we search for a cure, help spread awareness, and become an organ donor...become a LIVING donor.
The life you save, could be mine.
#LOVEANDLIGHT
~Ann Marie
