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Local woman battling lupus for nearly 40 years in need of kidney transplant, appeals for testing

Jennifer Sprouse • Dec 13, 2013 at 5:19 PM

Jill Sauceman is pretty good at beating the odds.

When Sauceman was first diagnosed with Systemic Lupus Erythematosis, an autoimmune disease where the body’s immune system attacks healthy tissue, doctors told her she would be either be on dialysis, have a kidney transplant or have kidney failure within 10 to 15 years.

That was almost 40 years ago.

It was right after she finished high school in 1974 that she began to notice discoloration in her urine, as well as feeling sluggish throughout the day.

Excited about starting college at East Tennessee State University that same year, Sauceman said she didn’t say anything, mostly because she thought the symptoms would go away.

“I went for my college physical in August and, of course, (doctors) did a urine analysis and then took blood work and said ‘uh oh, something’s wrong,’ ” she said. “They admitted me to the hospital that day.”

Sauceman said initially her doctor thought her sickness was a mild case of nephritis, running tests that always came back negative.

It wasn’t until her doctor read an article in a medical journal about lupus that he ran a test and sent her to the medical college in Richmond, Va., where they later confirmed she had the disease.

Sauceman said after being diagnosed, she was given mega doses of prednisone to keep the kidney inflammation in check and stop the lupus activity, and she would eventually land in remission. Sauceman was in remission for 16 years.

While in remission, she graduated from ETSU in 1979 with a degree in community health education and a minor in psychology, and married food columnist Fred Sauceman in 1980. The couple moved to Knoxville, where she worked at the National Kidney Foundation and also as a social worker for a private nursing agency.

Moving back to the area in 1985, she continued to work various jobs in the area, which included bookkeeping at the Northeast Tennessee and Southwest Virginia Heritage Alliance, before retiring to care for her mother-in-law.

“In January of 1992, my father died and I was in graduate school here (at ETSU). I was pretty much burning the candle at both ends because I was back and forth to my mother’s house, helping her in Gate City (Va.) and taking care of the estate for my dad ... and trying to go to graduate school,” Sauceman said. “I had a flair up again, except this time was more or less joint pain and swelling. I woke up one morning and I couldn’t even open my mouth.”

She said luckily, the incident never affected her kidneys, but she took anti-inflammatory medication for a while.

In December 2003, problems with her gallbladder led her to being hospitalized in January 2004, where her blood pressure spiked to a point doctors were concerned she could suffer a stroke or a heart attack.

Sauceman said previously, she suffered chest pains that would come and go with her menstrual cycles, so when she was admitted to the hospital they ran tests, which showed she possibly had blood clots in her lungs.

Doctors put her on blood thinners and monitored her high blood pressure so her kidney function wouldn’t be affected.

A biopsy revealed some damage had been done to the kidney and she was once again placed on blood thinners and was sent home.

“Evidently, being back on the blood thinner and moving around dislodged the clot that was in my kidney from the biopsy. I bled out internally,” Sauceman said. “From that point on, there was significant kidney damage. Since 2004, my kidneys that were pretty much stabilized from the activity in 1974 finally started going downhill and has just progressively gotten worse.”

Afterward, Sauceman learned she didn’t have blood clots in her lungs, but rather pulmonary endometriosis, and said her high blood pressure was actually the result of her diseased gallbladder.

Now, in stage 4 chronic kidney disease, Sauceman said her kidneys, which put up a good fight, are finally starting to wear out.

“My kidney function right now is around 13-14 percent and you typically qualify for a transplant (for) anything under 20 percent,” she said. “Dialysis starts at 10 percent and it could be months from now before you get to that point, or it could go down fast. Hopefully, I’ll just trickle down slowly, but I think I’ve done so well because I’ve had this problem for 40 years and my body has adjusted over a period of time to decreased kidney function.

“I haven’t really experienced many symptoms of decreased kidney function, except for my stamina. I’m just very tired and I want to sleep a lot. I’m hoping that maybe I can get a kidney before (dialysis) because they say that dialysis does stress your body, and people who can get a kidney before dialysis starts recover better and do better.”

After a lengthy set of tests at Vanderbilt University Medical Center back in August, Sauceman said she received word Tuesday that she was activated for the kidney transplant program and she, and her husband, have been — by word-of-mouth and through various social media outlets — telling people her story in hopes someone might be a match. Sauceman’s first call was to her pastor, Allen Huff, at Jonesborough Presbyterian Church, who sent a mass email to the members of the congregation addressing her illness.

To be a match with Sauceman, a donor would have to:

• Have type O blood.

• Be younger than 70 years old.

• Not have high blood pressure,

• Not be a diabetic.

• Be in good physical condition, with no other diseases or illnesses.

“That person (the donor) does have to make a trip to Nashville, give a couple things of blood, they may do a chest X-ray ... and then that’s it. It’s kind of an in-out procedure,” she said.

If selected as a donor, the kidney will be taken out laparoscopically and the surgery will be paid for through Sauceman’s insurance.

“I have had some responses through private messages from people who are willing to go and be tested,” she said. “It’s overwhelming ... just to know that people are willing to do it, even though they don’t qualify. I have had a response from a friend that said that she has the same type blood and that she’s willing to be tested. It means so much to me to know that I have friends out there that are willing. I really feel hopeful with as many friends as I have and even people that I don’t know ... that a kidney will be available at some point.”

Sauceman said there is always the alternative of dialysis, which she would like to hold off on as long as possible.

“I want to stay as active as I can. I want to be able to do what I’ve continued to do,” she said. “I sing in my church choir, I play hand bells. Sometimes I don’t feel like going, but I go. I push myself to go and do it and I always end up feeling better after I do. I love to travel. I want to be able to do that and not be tied down to dialysis.”

To find out if you’re a match, contact Vanderbilt and tell them you want to be tested for Jill Sauceman. Visit www.vanderbilttransplantcenter.com and click on the tab for the Kidney Transplant Program, or call 1-866-748-1491 and select Option 2. All information provided is confidential.

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