If you follow me on social media, you may be aware that my mother, Sharon Connor, is suffering from a devastating kidney disease. Since I am not able to donate one of mine to save her, I’ve started a Facebook page, A KIDNEY FOR SHARON, in her honor.
Our mission is twofold:
- to spread awareness of kidney disease/transplants, AND
- to (maybe, hopefully) find Mom a living (hero) donor.
A KIDNEY FOR SHARON: SHARON’S STORY
My mother, Sharon Lynn Connor (nee Wister), has a genetic disorder called Polycystic Kidney Disease (PKD). PKD is a progressive disease which causes the kidneys to be overtaken by fluid-filled cysts. As the cysts grow, kidney function becomes impaired, eventually leading to total kidney failure.
PKD is hereditary – an autosomal dominant disease that can devastate entire families. My mother inherited it from her father. She passed it on to me and to my brother. Three of my mother’s siblings are known to have the disease as well, including my uncle John, a two-time transplant recipient who passed away from sepsis and compromised immune system.
Mom’s kidneys began to decline in 2010. Her doctors were optimistic,telling her she might hang on to some function until her 80s. Less than two years later, she was in total kidney failure. She was exhausted, weak, sick. Her skin had turned yellow. Her kidneys weighed over twenty pounds. She was sixty-two years old.
In PKD, cysts can be present for many years without causing symptoms. Many people do not even know they have the disease. I was diagnosed incidentally through an ultrasound of my uterus in my early 20s. I was told, at the time, that I might live my whole life without ever being bothered– but the truth is, half of PKD patients will experience renal (kidney) failure by age 60; sixty percent will fail by age 70, and so on. It’s really a “when”, not an “if”.
There is no cure. Patients in kidney failure require dialysis, a life-saving treatment in which machines filter waste, fluid, and chemicals from the blood. Surviving kidney failure also requires a pharmacopeia of medications, a restricted diet, and vigilance against secondary threats such as infection and heart disease.
Mom started dialysis in June of 2012. “I lose three days and nights a week,” she says. “I don’t feel well on dialysis days; I come home, eat, nap, eat, nap, then go to sleep around midnight. I’m always tired. But I can’t skip dialysis. I have to go, no matter how I feel, no matter the weather. I if skip, the potassium will accumulate around my heart and kill me.
I can’t eat OJ, tomatoes, cheese, potatoes, anything with potassium or phosphorus, which is basically everything. I take three huge “horse'”pills with every meal, and with snacks, to soak up the potassium and phosphorus from my food. But one good thing: I have lost a lot of weight because I have no appetite. Also, my nails are strong and long because of all the calcium I take.
I have constant stomach problems; nausea and vomiting. I’m afraid to make social commitments because I never know when I’ll have a stomach attack and have to back out.“
The change in my mother since kidney failure has been remarkable. Friends and family knew her as a lively, flirtatious, gossipy “social butterfly” who loved dancing, dining out, and drinking with friends. She was actively involved in the lives of her grandchildren. She was always the host for family gatherings, even after she moved with my father to a retirement community; she’d come to my house and happily criticize my gravy and my dusting finesse.
Now, the family has gotten used to not having her around, not making plans. It’s hard to call her, never knowing if she’ll be sleeping. She doesn’t eat much when she visits, and never stays long.
I love my mother. Of course I do, she’s my mom. It’s hard to watch someone you love suffer, waste away. It’s hard not to be angry, to be pissed off that she has to go through this on top of everything else she’s suffered (like losing a child), pissed that she’s not around, not involved with my kids, not available to be a grandmother or a mother in the way I still (at almost forty) need her to be. It’s hard getting used to a life without her. It’s hard knowing she could, maybe, have another shot, but that I can’t be the one to give it to her.
It’s hard that this, dear reader, is the very best I can do.
But I’m a good daughter. I’m also a good writer, and savvy enough with social media to use it to reach out – so, here I am. Doing what I can.
I’m also a spiritual person. I believe in miracles. I’ve seen them happen. So even though this may be a shot in the dark, I have to believe that our story might reach someone very special. Maybe there’s someone out there who can make this miracle come true.
Want to help? Please, LIKE and SHARE our page, A KIDNEY FOR SHARON. Like and share our posts. The more people who see our links, the greater the chances we will reach someone who feels inspired to be a living donor hero.
Remember, love your kidneys. And love your mom.