by Ronda Lickteig
R-T News Writer
Most of us don’t really have a good understanding of how our body works – the organs just do their jobs and we go about our daily life without giving them a second thought. It’s only when something stops working properly that we realize the important role each organ plays in our health. For Paula Murphy, that organ was her kidneys.
Paula is in what is known as End Stage Renal Failure and undergoes dialysis three times a week at Davita in Trenton. Her journey with kidney disease really began at one of the happiest times of her life – the births of her children.
During her pregnancy with her son, Russ, in 1989, doctors thought she had toxemia, something that resolves itself after the pregnancy. At her six-week checkup she was told that she had signs of cervical cancer and issues with possible kidney disease took a back seat as she underwent surgery. Two years later, when she was pregnant with her daughter, Krista, she was once again in bed, battling what was thought to be toxemia. The symptoms of toxemia didn’t go away after Krista’s birth in October and on Dec. 24, 1991, Paula underwent a kidney biopsy and within a short time was told she had focal glomerulosclerosis.
According to the National Kidney Foundation, focal glomerulosclerosis describes a scarring of the kidney. In its early stages there are often no symptoms at all and protein in the urine and high blood pressure are often the first signs of trouble.
“I had no symptoms except that I was tired and my lab work was completely out of whack,” she said. “I didn’t notice what was wrong because I had just thought this was normal pregnancy symptoms.”
After her diagnosis, Paula sought treatment in Columbia, but was dissatisfied with the care she received. She said she actually went somewhere between five and eight years without seeking treatment for the kidney disease.
“I decided I would do something when I felt worse,” she recalled.
Eventually, she was referred to Dr. Susan Brown at St. Joseph Nephrology and sought treatment. On April 17, 2010 she had her first vascular access put into her arm (she has since had it done in her other arm), a process that involves using a surgically created vein to remove and return blood during hemodialysis. An arteriovenous fistula is a connection, made by a vascular surgeon, of an artery to a vein. An AV graft is a looped, plastic tube that connects an artery to a vein. She began dialysis in St. Joseph on Dec. 7, with her mother being trained to begin helping her have dialysis at home.
“We would stay at a hotel in St. Joe from Monday morning through Friday night. She had to learn everything, how to do it just right. She had to keep the charts and record everything – if I was asleep, if I had cramps, if I was thirsty, all of it. We did our own labs, too.”
Within the first year of Paula beginning dialysis, her mother got married and moved to Kirksville. She continued driving to Trenton six days a week to help Paula continue home dialysis.
“She’s been by my side every step of the way. I couldn’t ask for anything better.”
However, when her mother became ill, Paula began traveling to Chillicothe for dialysis and did that for a year and a half until the Davita site opened in Trenton. She now undergoes dialysis three days a week.
“Even though I’m not doing it at home, it’s actually better for me mentally because it’s only three days a week instead of six.”
She arrives for treatment (in her pajamas, she said, because she needs to be still and comfortable) shortly after 5 a.m. each Monday, Wednesday and Friday. The treatments take about three hours and she is home again by 9 a.m. She said she is “extremely wiped out” after dialysis and takes it easy on those days. Tuesdays and Thursdays are her catch-up days, when she takes care of her house and babysits her three-month-old grandson.
Kidney disease has changed her life in many ways.
“I don’t go out a lot. It’s not the ideal lifestyle, but I’m done by 9 a.m. and sleep if I want to. I like to mow on the riding mower. I’ve always told them I would do this as long as they never tell me I can’t do what I want to. And even if I’m feeling kind of cruddy, I’m the first one ready to go to the races,” she said, referencing her family’s favorite pasttime. “If I feel like doing it, we go. If not, then they can still go.”
Paula has to monitor her diet very closely as there is a “dry weight” that she needs to get to after each treatment. She is only allowed 32 ounces of fluid each day – and that includes what she eats and drinks. Things like watermelon, lettuce, pudding and Jello are out. She can’t have any foods containing phosphorous – things like dairy, bread, peanuts and peanut butter, tomatoes and pasta. She can’t have any canned vegetables unless they have been drained and rinsed to rid them of sodium. If she has potatoes, she will peel them and soak them in water all day to remove as much of the starch and phosphorus as possible. She takes phosphorous blockers to help combat the problem – a minimum of six with each thing she eats. One of the worst things, she said, is mushrooms, which are a fungus.
“You can’t get them clean enough,” she said. “I usually cheat and have one batch, but I haven’t done that this year.”
Her family has taken this in stride, she said.
“I’m truly blessed. My family just goes with the flow.”
Obviously the idea of a transplant has been discussed, but Paula has concerns about taking a kidney that could be used by someone else when there is a chance that the same disease can reoccur in a transplanted kidney. Also, since she has had 12 family members with kidney disease, she worries about taking a kidney that might be needed for a child or grandchild some day. At this point, she’s not sure if she will be placed on the list for a transplant.
What she is sure about is that she can share hope with others who are diagnosed with kidney disease and find their lives altered and their futures uncertain. Her positive outlook is something that can be shared with anyone -whether battling a disease or not.
“I’m thankful that I’m up every day whether it’s a really crummy day or a really good day. You just have to make the most of it.”
Anyone wishing to talk with Paula about her experience with kidney disease or dialysis can contact her at 660-635-0639.
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