What Joyce wants for Christmas
LINDA KOEHLER/TIMES NEWS Joyce Steigerwalt of Tamaqua shows how she prepares to hook herself up to peritoneal dialysis in her home. She will have to continue doing this for the rest of her life if she does not receive a kidney transplant.
'Tis the season for making holiday wish lists.
There's only one item on Joyce Steigerwalt's list. All she wants for Christmas is a new kidney.
Santa might have a hard time filling her stocking with that one.
So instead, she's praying to God for one. Her deep abiding faith in the Lord is what gets her through each and every day.
Joyce is one of over 85,000 people in the United States who is waiting for a kidney transplant. Only about 25,000 are done a year.
Joyce came so close to being one of those lucky ones earlier this year.
But, it didn't happen, due to a bizarre twist of fate.
Her story begins when she started experiencing blurred vision in 1992.
"And my eyes always felt like I had sand in them," she says.
A visit to the doctor, followed up by blood work, revealed her kidneys weren't functioning properly. She was sent to a nephrologist, a kidney specialist, who put her on a fluid medication. After a checkup a year later, the doctor told her she was fine. Six months later she was hospitalized. Her doctor was called and he told the hospital to put her back on the medication.
Her daughter told her to see another doctor, because she didn't think all was well with her mother. So Joyce went to see Dr. Cheryl Lipson in Palmerton.
Dr. Lipson reviewed her records and told her that there were three possible diagnoses of what was wrong with her. Two were treatable, one was not. After a biopsy, Joyce was diagnosed with Focal Segmental Glomerulosclerosis, the nontreatable one.
Focal sclerosis is scar tissue that forms in parts of the kidney called glomeruli. The glomeruli serve as filters, helping rid the body of unnecessary or harmful substances. Each kidney has thousands of glomeruli.
"Focal" means that some of the glomeruli become scarred, while others remain normal. The cause of focal sclerosis is usually unknown.
The doctor who did the biopsy called Dr. Lipson and asked her how could a healthy 57-year-old woman have ruined kidneys.
Dr. Lipson told Joyce because of this condition, she would become diabetic and would have to go on dialysis.
Joyce has not become diabetic and she did not have to have dialysis until 15 years later. She has had six doctors tell her she couldn't possibly have focal sclerosis because she wasn't diabetic.
"What can I say? I'm the kind of person who doesn't give in to anything," she chuckles.
She's also the kind of person that has spent her life devoted to her family, friends and church.
She and her husband, Ernest, have been married 55 years and live in Mantzville. They have four daughters, six grandchildren and one great-granddaughter.
As a member of St. Peter's Church in Mantzville, she has given tirelessly of her time and efforts to fundraising.
Years ago, the church began to grow and needed more room. An addition was needed and Joyce went into fundraising high gear. She and the Kitchen Krew began making apple dumplings as one of their fundraisers in the tiny existing kitchen. The number of orders kept climbing. After the addition was built, she walked into an empty storage room and immediately saw a potential apple dumpling center.
Not wanting to burden the church with any more financial needs, she set out to equip the room through donations.
She borrowed money to purchase microfiber cloths, sold all of them, ordered more, sold those, had enough money to pay back what she borrowed and to install a lineloeum floor. When parishioners heard what she was planning on doing with the space, she had a stainless triple sink, a cooler, a stove and a chest freezer donated. The church did buy two convection ovens and a dough roller.
Today they make 1,700 homemade apple dumplings every month, six months out of the year.
She has been a dedicated worker for her church all her life but with her kidneys failing, so is her energy and she has had to cut back from the many hours she has spent doing the Lord's work. She misses it greatly.
On dialysis, she was put on the waiting list for a kidney transplant at Lehigh Valley Hospital.
One Sunday in 2009, her pastor, the Rev. Rodney Wells, made the announcement that Joyce was going to need a kidney transplant.
Burdell Snyder was sitting in the back of the church that morning. He had known Ernest and Joyce all his life.
"They're rock solid good people. They've been like parent figures to me. I've often gone to Ernie and asked him for advice and they treat me like a son. Joyce is a tremendous leader. I can't say enough good things about her. They're just good people," says Burdell, 46.
He left church that day and thought very long and hard about Joyce needing a kidney.
"A friend of mine, John Eckhart had received a kidney 14 years ago and he's doing fine. Another friend of mine, Jeff Beecroft, donated a kidney years ago and has since done two or three tours in Iraq as a member of the Army Reserve and he's doing well. I thought, God gave me two kidneys and I only need one. I'm going to give Joyce a kidney."
It was during their church's picnic in September 2009 that Burdell approached Joyce and told her, "I'll donate a kidney to you if no one else can."
She was stunned.
"She cried, she was so happy," he says.
After testing, they learned he was a match. Then there were lots of blood tests (one time 14 vials of blood was taken), tissue and blood typing to help make sure the body would not reject the donated kidney, skin tests to check for infections, heart tests such as an EKG, echocardiogram, chest xrays, an ultra sound, tests to look for early cancer, a visit with a priest and a psychiatrist. They were finally given the green light.
Burdell had only one stipulation - he would do the surgery any time except from September on because he wanted to be able to go deer hunting.
That was a-okay with Joyce.
The transplant was scheduled for March 2010.
But, through a series of events, the surgery never took place.
In January 2010, Joyce was hospitalized five times. Then the doctor scheduled to do the transplant decided to retire and move back to India. Joyce was going to have to wait until another doctor could come on board to do the surgery.
One night at a prayer meeting, Burdell came to Joyce and asked her if they could go somewhere else for the surgery.
Her brother told her that his chiropractor had a kidney transplant through the Harrisburg Hospital Pinnacle Health System. So she called and arranged for an appointment in April. She was told she and Burdell needed to have additional tests done, even though they had gone through all of them previously to qualify for Lehigh Valley.
This is where the story becomes almost surreal.
Joyce's stress test revealed she had two blocked arteries and had to have open heart surgery.
Burdell's blood work revealed abnormalities of his thyroid. A biopsy was done in June and half of his thyroid was removed. The biopsy revealed he had thyroid cancer and the rest of his thyroid was removed in July.
"I was shocked. I had no clue. It turned out to be a blessing for Joyce and me. It saved our lives," says the husband of Francine, an RN at St. Luke's in Coaldale, and the father of Sheri, a junior at Kutztown University and Andy, a senior at the U.S. Coast Guard Academy.
Sept. 16, he received radioactive iodine treatment and had to be in quarantine for four days. He has to carry a Security Personnel and Law Enforcement card until Dec. 16, 2010 stating that he has had a recent nuclear procedure done in case he is stopped by any kind of law enforcement. If he blows his nose in a tissue, it has to be burned or flushed down the toilet.
He's not out of the woods yet until he receives his second scan sometime in January or February 2011.
Bet you can't guess what he wants for Christmas this year?
"But it really stinks that it happened because now I can't give Joyce my kidney."
"He cried because he couldn't give me a kidney," says Joyce, still astounded at the generosity of the man.
So Joyce is back to square one - in need of a kidney.
Recently, Pastor Wells suggested Joyce should go public in hopes that someone, like Burdell, would come forward and be willing to donate a kidney. She says both men are an inspiration to her."Joyce is a human spark plug for the Lord. She knows how to get things done. She is a great organizer and motivator. She encourages people to see a larger picture and how they can help to make the picture a reality. She puts in long hours working on different fundraising projects to support St. Peter's Building Fund," says Pastor Wells.
He believes she is still needed.
"It is not just about raising money. Her heart and soul are helping, caring, and supporting what she calls 'her church.' She uses her talents, skills, and persistence to get the job done," Pastor Wells adds.
Since she is on dialysis, Joyce has had a graph, hemodialysis and a fistula catheter for dialysis and all got infected. Peritoneal dialysis (PD) was her last chance and it has been successful. She does it in the comfort of her own home, four times a day, every six hours. It takes an hour at a time.
The process uses her peritoneum in the abdomen as a membrane across which fluids and dissolved substances (electrolytes urea glucose, albumin and other small molecules) are exchanged from the blood. Fluid is introduced through a permanent tube in the abdomen and is flushed out via regular exchanges throughout the day.
"I'm just lucky I can do this at home," she says. "Since I'm on PD it's not so bad. I feel pretty good. I keep saying if I get a kidney of a younger person, I'll have to wear roller skates," she smiles.
She can't put in the long hours in her beloved church kitchen anymore but helps in any way she can for as long as she can. Also, she utilizes her love of sewing (her second love after her church) by making Barbie clothes for her 7-year-old granddaughter and tote bags for walkers.
After having her left femur broken, needing two surgeries, she needed to use a wheelchair and then a walker after each surgery. She found it was convenient to have a cloth tote bag she could attach to the walker to carry necessary items. She has made hundreds of the cloth tote bags since and gives them away to those who need them as part of her ministry. She will take any kind of material and trim that anyone would care to donate to continue making them.
"My goal in life has been to work for God. Then this happened and my work has been put on hold. But I believe I will get a kidney because I still have so much more of the Lord's work to do."
(If you would consider becoming a kidney donor for Joyce, please contact her at (570) 386-5581 or the church office at (570) 386-4388.)