FREEHOLD – Susan Zuber is looking forward to the day when she can drink a great big glass of water! Right now, she is looking for the generous person who could make it possible.
The professional former manager and CEO of major non-profit organizations whose office was in Washington, DC, Susan is currently on sick leave and living at home with her mother, Bunny Zuber, while waiting for the kidney transplant which will make it possible for her to regain her normal life routine.
It all started four and a half years ago when Susan was taking a leave of absence from her job to assist her mom in caring for her ill father Walt Zuber. While caring for her father, who died in December 2013, she had a frightening experience while driving. Behind the wheel she suddenly heard strange noises in her head, became disoriented, and experienced an electrolyte imbalance in her body. Her brother, who was in the car with her, managed to get her safely to the hospital where it was determined that Susan had suffered kidney failure. Medical professionals still do not know the cause of kidney failure, but theorize her kidneys, the two small bean shaped organs at the back of the abdominal cavity that help control the volume of fluids in the body, had been compromised due to stress and a reaction to anti-inflammatory medications she had been taking for arthritis.
Kidney failure meant Susan would have to go on dialysis three times a week, a four hour long procedure during which she is hooked up to machines that do the work of the kidneys…..removing all the excess water and toxins from her body. She’s been doing that for four and a half years while she patiently waits on a list with others all hoping for a transplant either from a recently deceased person or a live donor. Because dialysis is an artificial means of doing what the body usually does on its own, it also means a highly restricted diet for Susan. The need to curtail all potassium and other minerals means no bananas, sweet potatoes, or many other foods, very little phosphorus means limited seafoods, meat and nuts. But the worst restriction, Susan emphasizes, is on fluid intake.
“I can only drink 32 ounces of fluid in every 24 hours,” the determined and upbeat sixty-year-old said. “Do you know how little that is? That’s really brutal.”
The dialysis procedure itself does not bother her so much as the fluid restriction, she’s quick to admit. During the four hours every Monday, Wednesday and Friday at the Davita Center in Manalapan, Susan either reads….she used to read a novel a week… watches tv, or simply “zones out.”
Nor does she complain either about the disease, how it has changed her life or the procedure itself. “It’s the inability to drink water that really bothers me the most.”
Like thousands of others with kidney failure, Susan faces the long wait that includes not only having a willing donor, living or deceased, but also assuring the match of a new kidney to her body is perfect. Because she’s been on the list so long, her doctors tell her she’s “getting close.” But that also means she faces numerous disappointments.
“I’ll get a call when they think they have a good match,” the highly intellectual and outgoing woman explains, “they’ll tell me to be on call, there might be a kidney, but more tests have to be done. The wait may be one hour, it may be 12 or 24. But you’re hoping, praying and preparing the whole time.”
It happened to Susan five times so far, three times in fact, in one month. “You’re on standby until they check the match, the location of the kidney donor, and the time frame. I’ve been called twice this month, so I know I’m very close.”
While the wait and subsequent sorry- not- this- time-call can be crushing, Susan never loses hope. “I just have trust in God,” she shrugs, “I know it’s going to happen, and if this isn’t the right one, maybe the next one will be. But it will happen.”
Living donors are less likely to be available than deceased donors, but Susan continues to be hopeful for that as well. Even if blood types do not match, the University of Pennsylvania Hospital in Philadelphia and Robert Wood Johnson in New Brunswick and Georgetown University Hospital in DC, where Susan is on each waiting list, have programs that will enable Susan to get the kidney of another donor who matches while her donor’s kidney goes to a more precise match.
Susan’s pastor at St. Rose of Lima Church where she worships, put a letter from Susan in the Sunday bulletin over several weeks, inviting anyone interested in learning more about being a living donor to contact her for further information. She’s also put her request out on Facebook, and both news items have resulted in calls, people contacting the hospital for forms to fill out, and hope that perhaps one of them will be the right match.
Persons interested in knowing more about Susan’s handling of her situation can contact her at 202-494-4449; those interested in knowing more about becoming living donors can contact the University of Pennsylvania Hospital’s Living Donor coordinator at 215-662-6200.
“I know it’s not going to be long before I can have that big glass of Poland Springs water than I can just gulp down,” this upbeat and optimistic lady laughs, “I’m close, I’m really close!