With Time Running Out, Kidney Patient Jean Williams Lives on the Edge
Jean Williams learned at a very young age that she had inherited the same illness that afflicted her mother and grandmother -- polycystic kidney disease. The condition also affects her daughter.
Now the deterioration of Jean's kidneys has progressed to the stage that she may soon need a transplant.
"Start getting the word out now that you are looking for a living donor," her UNC doctors recently told her. Why? Because the waiting list for a cadaver kidney currently stretches out for five or more years.
"I am an only child," says Williams. "So is my husband. We have no siblings that might be a match. And in most 'live' transplant cases, the donor is a sibling or very close relative."
Jean Williams, who now lives in Pinehurst, was born in Watertown, N.Y., and raised on a dairy farm in Ellisburg, N.Y. She earned a bachelor's degree in elementary education and library science from the State University of New York at Geneseo; and a master's degree in library science at Syracuse University.
In addition to serving as a school library media specialist for 25 years, she enjoyed career positions in various educational institutions, including Syracuse University, Cazenovia College (where her husband, Fred, was a professor of history and political science), and was involved in many professional associations.
Although Jean and Fred had known each other all through their school years, they were not high school "sweethearts." It was only after they graduated from their respective colleges that the two found their mutual group of school friends with whom they continued to socialize had "paired up," leaving them the only singles in the group. They started dating and married June 17, 1961.
Before their wedding, Jean Williams went to her physician for a premarital exam. A rather blunt, gruff, older man, he emphatically told her she should not have children. His position did not center on her physical condition but was from his personal moral point of view.
"He felt it would be immoral for me to bring a child into the world because polycystic kidney disease is 90 percent hereditary, and there is a 50 percent chance of passing it on," she says.
Upset by the doctor's comment, Jean called Fred, who was in the Army and stationed in New Jersey and told him what the doctor said, adding, "If you want to call the wedding off, I'll understand."
Fred already knew about Jean's disease and had a quick response.
"This isn't the end of the world," he told her. "If we can't have children, we can't."
A few years later, after they were married, the couple moved to Syracuse. Her new doctor took a totally different approach and told Williams that her age and health at the time made him confident he could get her through a pregnancy if she was very careful.
Eight months into her pregnancy, Jean became toxic, and daughter Heather was delivered by Caesarian section.
"Now Heather is a mother and has four children," Jean says with a smile. "Even though she, too, has the disease, she works part-time as a quality engineer for Lockheed Martin in New Jersey. And, other than being on blood pressure medicine, she's in good health."
Life Until Now
Williams' life has been uneventful and on a relatively even keel from a health standpoint for many years. At age 55, she and Fred took early retirement so they could enjoy travel -- especially on "big steamboat" outings -- and other activities while her health remained stable.
"Having known since I was a child that I had this disease, I feel fortunate to have had excellent medical care throughout my life," she says. "When I was in my late 20s, I was told I would probably need a transplant by the time I was 40. I worked very hard to carry out any instructions given to me by my doctors, hoping to extend that time. It seemed that each year there would be a new study that would suggest ideas for helping my kidneys to remain functioning longer -- and, on my doctor's advice, I would embrace them."
Williams says that her positive attitude and belief that the Good Lord had a plan for her life beyond 40 years of age has enabled her to reach the age of almost 70 years before needing a transplant.
"I feel truly blessed that I have had an opportunity to make preparations for dialysis (creation of an AV fistula in her arm) as well as undergoing the transplant evaluation at UNC Chapel Hill," she says. "Some individuals wake up in the hospital from an operation or car accident and find themselves on dialysis without having had such an opportunity."
Facing the Challenge
Within the past year, Williams' kidney function has begun to decline. While plateaus are often reached and maintained for long periods of time -- which was true for Williams for more than 10 years -- her kidney function recently dropped from 50 to 35 percent, then again from 35 percent to 20 percent in 12 months.
"When you don't feel differently and find that out, it is a little bit of a shock that you've lost that much function that quickly," she says.
This change in condition has caused Williams' physician to urge her to begin looking for a living donor immediately, since a drop to 10-12 percent requires dialysis and eventually a transplant.
"Putting this [need] out in public is difficult for me," says Williams, who describes herself as a very private person.
Someone recently commented that it must be hard getting up each morning with "this" [disease] hanging over her.
"I don't think of it that way," she says. "I get up in the morning and think, 'It's a new day!' I'm a positive person and aware of what may happen. But I've lived with this all my life and keep up on research. Knowledge is good. The more you can understand it, the better off you are, and Fred and I feel we have had a great life and done almost everything we want."
Williams continues with her social activities and still serves as a lay reader at the 8:30 and 11 a.m. services at The Village Chapel, something she has done for the past 15 years.
"Basically, I'm still doing all the things I've done all my life, perhaps a bit slower," She says. "But nevertheless, at this point I still have a great quality of life."
She is anemic and must receive shots to alleviate those symptoms. She also has dietary restrictions but says she does not find them cumbersome.
But the possibility of facing dialysis and a kidney transplant has drawn closer. While several friends have offered to be living donors, health problems have precluded their participation.
During her most recent trip to UNC as part of a comprehensive medical evaluation to determine whether she is a transplant candidate, Williams received the good news that her "clearance count" has remained the same for the past three months, delaying the need to begin immediate dialysis.
The Williamses hope this news will allow them to return to their home on Lake Ontario in Henderson, N.Y., where they have spent their summers for 44 years. They will be close to familiar medical facilities so that if her condition changes, she will be treated by physicians who know her.
In the meantime, the couple, their daughter, Heather, and their friends are putting out the word that a living kidney donor is needed should her kidney function drop again. Potential donors must be in good general health, cannot be excessively overweight, and cannot have high blood pressure, diabetes or kidney stones, because each of these situations can compromise an individual's health, including renal function. The first criterion for being a living donor specifically for Williams is to have either type A or O blood.
Many people are not aware that a kidney donor must undergo several tests to be sure his or her own health will not be jeopardized by the donation. Donors can expect to be in the hospital three to five days after surgery to remove the kidney. Most are able to return to work in four to eight weeks.
The recipient's insurance covers all hospital costs, including initial tests. The living donor does, however, need to have his or her own insurance to cover post-operative procedures.
Commenting on kidney donors, Ann Litts, renal transplant donor coordinator at UNC Hospital, says, "One does not have to be related to donate a kidney to a person. While many donors are related to their recipients, we also see a large number of friends and acquaintances coming forward for our patients."
There are currently 521 patients on the UNC Chapel Hill waiting list for kidney transplants.
Anyone interested in being a living donor either for Williams or someone else should contact Litts at UNC Hospital for further information (919) 966-3079.
More like this story